#871 Best of Juicebox: Standard Deviation and her Friends

First published on Jun 8, 2020. Dexcom's John Welsh M.D. does a deep dive on Standard Deviation, Coefficient of Variation, A1c, Time in Range and more. 

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends and welcome to episode 871 of the Juicebox Podcast

Welcome back to the best of the Juicebox Podcast today we're revisiting episode 343. It originally aired on June 8 2020. And it's with John Welsh, a doctor who goes into a deep dive on standard deviation, coefficient of variation, a one C, and time and range. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. Are you a US resident who has type one or the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox. Join the registry complete the survey. When you complete that survey. You are helping type one diabetes research to move forward right from your sofa. You also might be helping out yourself and you're supporting the podcast T one D exchange.org. Forward slash juicebox.

This episode of the podcast is sponsored by cozy earth. Now you can get 35% off your entire order at cozy earth.com Just by using the offer code juicebox at checkout, I'm wearing cozy Earth joggers and a sweatshirt right now these joggers are like the best and our sheets are super duper super, super cool. And silky and soft. Also from cozy Earth. Cozy earth.com use the offer code juice box to save 35% The podcast is sponsored today by better help better help is the world's largest therapy service and is 100% online. With better help, you can tap into a network of over 25,000 licensed and experienced therapists who can help you with a wide range of issues. Better help.com forward slash juicebox. To get started, you just answer a few questions about your needs and preferences in therapy. That way BetterHelp can match you with the right therapist from their network. And when you use my link, you'll save 10% On your first month of therapy. You can message your therapist at any time and schedule live sessions when it's convenient for you. Talk to them however you feel comfortable text chat phone or video call. If your therapist isn't the right fit, for any reason at all, you can switch to a new therapist at no additional charge. And the best part for me is that with better help you get the same professionalism and quality you expect from in office therapy. But with a therapist who is custom picked for you, and you're gonna get more scheduling flexibility, and a more affordable price. I myself have just begun using better help. Better help.com forward slash juicebox that's better help h e l p.com. Forward slash juicebox. Save 10% On your first month of therapy. All right, let's talk about John Welsh for a second. John has type one diabetes. He's a physician. And he works at Dexcom. And he's on the show today because I reached out to Dexcom and said, I want to drill down deep. I want to understand granularly the way smart people understand what is standard deviation. And I know that might be like You're like Oh my God. That's what this episode is about. But no, no, listen to me, what we're going to talk about today, standard deviation, we're really going to understand what it is and how they come to those numbers. We're also going to talk about coefficient of variation. Now there's a lot of words you don't know. But by the end of this, you're going to understand. And you're going to understand why it's so important for you living with type one diabetes. After we get all this information into our heads, I started talking to John a little bit about how does he manage what does he call success at the end of the day. And it wasn't as much about the numbers, as you might think. But he really helped me to understand what these words that you know, maybe don't make sense to us right away. Just lay people what they mean, and how they're helping. You know, it used to be all about a one C right? You just tell you tell people like keep your eye one say here, this is what you have to do. But then all of a sudden you start hearing people talk about standard deviation and variability and this is going to help you to understand that even more. I had such a good time talking to John, that it got away from me. I was supposed to talk to him for an hour and like an hour and 20 minutes into it. I was like oh my god, I gotta let you go. He was like four We're minutes away from having to go to another meeting. And I just like, I'm sorry, go, go go. I found this incredibly interesting. I hope you do too. Because I really believe that the concepts that John and I spoke about today are at the core, they're the basis the bedrock of how you should be considering your health with type one diabetes, if you're looking for data to tell you how you're doing. These three things are a huge piece, you'll see. Please remember, while you're listening, that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please Always consult a physician before making any changes to your health care plan. Becoming bold with insulin. I wanted to call this episode, sugar Adam. But anyway, you'll find out why. Here's my finding. And I've been at this for quite some time, being around the diabetes space, I guess. And when the powers that be whoever they be, decide that we should all be aiming for a lower agency, there's a way to disseminate that information they pull together, you know, industry people, and they give them the toxic here's why no one c should be here and not here. And here's what we've learned. And you know, you get that talk. And then those people find different stakeholders and influencers and they spread the word. And before you know it, when it's distilled out to the public, the message is simply, you know, the ADA decided that your agency should be this now. And that's what you're now going to hear your doctors, your doctors talking about. Like it's, you know, like, it's a rule handed down from my PI, though, suddenly, they have a different opinion. And if you don't pay attention, you don't realize that that's just how we get information out to people, right, there's no good way you can't call everybody in the world and say, Hey, by the way, your agency should be a little lower. Now, you do this. But often, while we're spreading that information, it lacks real context. And when this happened recently, I'm gonna guess in the last two years, when all of a sudden, you started hearing your endocrinologist tell you? Listen, it's really much more about variability, your standard deviation, and they started talking like that. There was no context with it again. And then suddenly, everyone's just, you know, they're walking around, like they learned something. And they say, you know, a one sees not as important a standard deviation, and then all the sudden the message becomes a one sees not important, and then it gets, it gets, you know what I mean? Like it gets ruined as people oversimplify things. And so I really want to leave this talk, just backwards and forwards understanding standard deviation. And when I reached out to Dexcom, I said, I need someone who can really do that, and no pressure, but they said it was you. So

John Welsh M.D. 7:50
I guess you know, if you looked around Dexcom, you would say, All right, we need somebody who can tell stories, who can talk in a straight line more or less. And my, just by way of introduction, I My job title is medical and scientific writer. So I love a good story. And I love especially those stories that have to do with numbers and stories that try to convince people that the truth is actually true. And numbers can really buttress a story, you say, hey, look, look what happens if you don't save for retirement. Here's, here's one way you could go if you spend your money in Las Vegas on that gambling table versus spending your money in an IRA or whatever. So the the idea that you can make convincing arguments with numerical data has always been attractive to me and, and that's why I did some residency training, I went to went to medical school, went to graduate school. And after medical school, I did residency training in laboratory medicine. And laboratory medicine is all about measuring things, and saying, Oh, you've got an abnormal value on one of your lab results. And here's why it matters. And here's what you should do to mitigate the risk of, for example, having a really high potassium level. So if you have good data, then you can make persuasive arguments and you can change people's behavior, hopefully, keep them out of trouble. In the case of a higher low potassium, you could save their life, if you get the doctors to intervene. In the case of some really abnormal lab value that might come up in the hospital context. The bigger question about about glucose values and standard deviation. We can get to that but you made the broader point about public health recommendations and man we are just right in the middle of public health recommendations with with the pandemic because there's there's a lot of uncertainty, which is gosh, you know, how can I go to the concert? Can I go to the restaurant? Can I go outside without wearing a mask and that the recommendations that we've been getting from public health authorities have been A little bit discombobulated maybe internally inconsistent and kind of frustrating at times. But I am with you though the idea that we can provide good evidence based recommendations with respect to goals in managing diabetes is, is a big interest of mine. I'm all about all about the numbers.

Scott Benner 10:20
Well, many, many years ago, I came to the conclusion for my daughter, that if I get what I expect is what I started thinking of it as I realized I had Arden's high line set at 200. And I always kept her under 200. So one day, I moved her to 180. And I was like, Oh, I always keep her under one ad. This is really interesting. So I kept pushing it down and pushing it down. And now my daughter's, you know, ranges 65 to 120. And mostly, we keep it in there. And when we don't, it doesn't go that far out. Right, I'm gonna go to 150. That's usually, you know, like, just now, I will use this morning as an example, two slices of toast, an avocado, butter, and an orange. And her blood sugar went to 148. And it's coming back now. And it's not over a longer yet. Beautiful. Right? And so, but her standard deviation will look bigger than someone else's. And I don't know if I'm making up things in my head, or, like, how is it possible that Arden can have a life like that, but her standard deviation could be higher than someone who's a one sees a point or two bigger than hers, and who have swings that are far higher and lasts longer. And so that's the one idea that keeps me focused on I don't understand standard deviation or not. And then when I start talking about it with the people that I that listen to the show, I come to realize that everyone's sort of got that, that confusion. So can we start very over simply. and standard deviation as an idea? Is a mathematical issue. Is that right?

John Welsh M.D. 12:01
Oh, it is it's it's a number that is used to describe a set of numbers. So for the case of folks who are using CGM, you might expect up to 288 numbers every day. And each number represents a glucose concentration. And you can use words to describe that set of numbers or you can use numbers to describe that set of numbers. The the average is a pretty simple number that it's easy to calculate, you would add up those 288 values and then divide by 288. And then you get the mean, in this case, it's the arithmetic mean. There's other flavors, there's the geometric and the harmonic mean. But we'll we'll leave those aside for now. But the arithmetic mean, tells you it's a measure of central tendency, where you might expect the average, if there is such a thing, an average value to fall. The standard deviation is is another number that's used to describe that set of numbers. And it describes the width of that distribution. So it gives you an idea of how surprised should you be when a number shows up, which is pretty far away from the main. So here's I've got a kind of wonderful document came out a couple years ago that looked at glucose concentrations in people without diabetes. And they they came out with normal values. And the normal value here for glucose was pretty close to where is it 99. And express this number 99 is the average and then they give you a plus and minus seven. That plus or minus seven refers to the standard deviation. And the standard deviation. If you imagine a bell curve that you might have seen in school, where the most popular value is right there in the middle, that's the mean value, in this case, 99. The plus or minus seven tells you how steep is the drop off on either side of that mean value. So in this case, the 99 plus or minus seven, if you were to go up to 106. In other words to the mean plus one standard deviation, you would expect to have about I'm sorry, let's go back and say 99 plus or minus 799 minus seven is 9299 plus seven is 106. So anywhere from 92 to 106. The expectation is that you would have two thirds of the values in that pretty narrow range. So if your goal is to have if your goal is to have quite a lot of stability, which in general is a good thing. You want that standard deviation to be low and normal people without diabetes, it is in fact quite low. 99 plus or minus seven is a very tight distribution. Two thirds of the values fall between 92 and 106. Okay, so Whether there's a calculation, we could walk through it if you want,

Scott Benner 15:02
please. Yeah, I was just going to tell you that when we're done. And I can say this because this won't go out until after I'm allowed to, but I'm wearing a Dexcom. Pro. I have been for a couple of days. Ah, so I can see, I'll be able to look while you're talking and figure out what mine is.

John Welsh M.D. 15:20
Oh, good. So are you able to see the real time data or not yet? No, I

Scott Benner 15:25
see it. It's not blinded. I'm looking at it on my phone.

John Welsh M.D. 15:28
Oh, okay. Well, I hope you're, I hope you're within seven points of 99. I hope you're well in the normal range.

Scott Benner 15:34
I certainly hope so too. But I am I, I was really, I have to be honest. As I put it on, I thought, I'm doing this so that I can see how a working pancreas attacks things brings them back what curves look like, I wanted to see all that because I thought it would make it easier for me to speak to people about about using insulin. But at the last second as I was about to do it, I thought am I about to find out I have like type two diabetes or pre diabetic or something like that as like maybe you know, and I just kind of was like, alright, well, if that's if that's the case, it's the case, I'm going to find out. But so far, so?

John Welsh M.D. 16:15
Well, I hope so. And when we do onboarding, we have people come work for Dexcom. And part of the onboarding process is, hey, look at, look at our product and look at what it does. And of course, it's voluntary, but we say all right, if you'd like to wear one of these, just to know what the experience is, like, we can get you set up with one of these. And our expectation is always your glucose values are going to be are going to be let me check boring. And you're going to have a really smooth ride throughout the day. You know, 99 plus or minus seven. But once once in a while we have we have people that come back and they say, you know, John, I learned something really interesting. And what's that? If I have if I have an entire pizza, I can get my sugar up to 180. And I say wow, that's, that's abnormal. And so people learn something, even if they don't have a known diabetes, they can learn something about diet and exercise that you know, I went for a long bike ride yesterday and I crashed I went pretty low. And then I had the the Coca Cola or the sugary drink. And then I saw my sugar zoom back up so you can learn a lot. And that's a general truism that you can learn a lot just by looking. But Scott, I'm pleased that you're wearing one of the CGM sensors and I hope you learned something I really

Scott Benner 17:39
am. I'll tell you already, I had two pieces, smaller pieces of homemade pizza on Sunday. And three and a half hours later, I got a push up from the protein and the fat probably holding the the crust of the pizza in my in my system longer. That was fascinating. And this morning, I had a breakfast that was just a piece of Turkey and toast. People are like oh my god so boring. But, but I smoked a turkey yesterday, it was so good. John, I want to have some sort of breakfast. So I took some turkey and I had a piece of toast this morning. And when I was done, I grabbed a navel orange. And when I ate the orange It tried really hard to push my blood sugar up. You know, not immediately but it was it was drastic, and my body attacked the drastic rise so much so that I was 74 straight down for a second before I leveled right back out at 80 It was amazing. I went from 74 straight down to 80 and stable in a fight in all my shin one five SEC five minute things. So I saw my body go oh, that's a lot of sugar from that orange. And you know, he's already put this bread in here, I guess you know, I don't obviously don't know exactly how my body's thinking but but the idea was I was I was starting to push up a little from the bread not greatly. But then I think when I added the the simple sugar, I just I got a really quick response. So I'm noticing that that every time I press with simple sugar, my body comes back more aggressively than it does with more complex carbs.

John Welsh M.D. 19:03
You know, boy, that's interesting and, and other people have described it to me where they'll, they might have some indiscretion, they'll say I'm gonna have a 24 ounce Mountain Dew and you slam the sugary beverage and you get this wonderful increase in sugar which you can feel in life is wonderful. And then what you described with the orange happens happens in a very dramatic way where they're the insulin kicks in and then the sugar plummets and then all of a sudden you have the the big crash after the sugar high comes the crash and that I think that's a manifestation of instability. And same thing. I'm going to make a quick little analogy to the cruise control on your on your car. What I hoped for when I engage the cruise control on my car is just a smooth ride. And and I don't want the car to be slamming on the throttle and slamming on the brake all the time. You I just want to be going at 65. All the way home. So I am very sympathetic to your experience with with high amplitude glycemic swings. It's it's a common thing, especially in the world of type one diabetes where we're all taking insulin.

Scott Benner 20:17
Yeah, it's it's very interesting. I'll tell you and I'll then I'm gonna let you get back to it. But the other thing that happened that I really didn't expect, but makes total sense, is that for about the first 36 hours, I wore it, every time I looked and saw my blood sugar stable, I had a horrible feeling of guilt. It was, it was really interesting, because my daughter has had type one since she was two, she's 15. Now I have interactions with 10s of 1000s of people who have diabetes, and they all would just, I don't, they would do anything to have that, you know. And it really, it really impacted me for in the beginning, I just was I felt very guilty for my pancreas working. It was a weird feeling. So, but I'm sorry, I shouldn't derail you, because we're talking about something that's, you know, you don't think it's complicated, but trust me, I do. So I shouldn't I shouldn't distract myself. But we were talking again, about about people, you know, who have a functioning pancreas. And you said, you know, let's pick 99 Is that is that that kind of center target? And you can go to 92 or up to 106? And then explain again, what I'm sorry, where were you headed with that?

John Welsh M.D. 21:23
Oh, sure. The value, I'm looking at a big article that came out a couple years ago, they looked at 153 People without without diabetes. And they put glucose monitors on him. And they they collected a bunch of data. And so the question, I guess the first question is, why would you care? Why would anybody bother? The answer is, well, we want to know what normal looks like. So we can decide if if a particular glucose profile is reassuringly normal, or if there's something going sideways on it. The 99 value from earlier is the mean, the standard deviation I gave you earlier is seven. And that tells you something about how wide the distribution is. So one standard deviation on either side of 99 would go from 92 on the low side up to one 106. on the high side, that mean plus or minus one standard deviation, the expectation is that two thirds of the values would fall in that relatively narrow range, two standard deviations 99 plus 14 is 114 113. on the high side, and then 99 minus 14, I guess is 85. Is that right? On the low side, so 85 to 113, the expectation is that you would cover an even higher percentage, I think 96% of the values would would fall in that range. And if you go out even further to plus or minus three standard deviations, the expectation is that almost all the values more than 99% of the values would fall within three standard deviations of that central value the mean. So that's, that's it in a nutshell, the calculation. It's not difficult, it's not trivial, but it's not difficult. I'm not sure if your audience would be interested in walking through it or just looking it up.

Scott Benner 23:19
Right now, John, this is very much meant to be for people who are interested in that. So I have a group of episodes, there's about 20 of them. They're called protests and they are deep dives into specific things about type one. And this is this is one so don't think of this as an interview as much as think of it is, we are really trying to pick this apart so that when someone listens through like, I'll be honest with you. In sixth grade, my guidance counselor told me I could take algebra halfway through algebra, I didn't understand algebra at all. And I thought, oh, my gosh, I'm terrible at math, I dropped out of it. A was a bad decision, because I followed a much simpler math track the rest of my time, which probably wasn't necessary. And just now, as you were talking, I, you know, you set up this scenario, and the standard deviation was plus or minus seven, and you started talking about out one, standard deviation two and three, and it just started to make sense to me. So you're doing a good job. Trust me if I understood what you just said, everyone listening has a chance to understand it as well.

John Welsh M.D. 24:20
Well, you're you're very kind and that's I'm very pleased to think that we're making progress toward the goal, then we can I can introduce the topic again and say the standard deviation is just a number that's used to describe a set of other numbers. The standard deviation, there's a calculation for it, it's a little bit involved, but involves, first of all calculating the mean for a population. The example that we used was the the mean value for people without diabetes, it's 99. You have quite a lot of values. You might have 1000s or 10s of 1000s of values. And this is where it gets a little bit tedious. For every one of those individual values in the set that you want to describe, you have to calculate the difference from the mean. And the difference from the mean is either going to be a negative number, or it's going to be a positive number, depending on whether the the individual value is higher or lower than the mean. You square that. So squaring a negative number, it gives you a positive number, squaring a positive number gives you a positive number. So you're going to get another set of numbers, which is the squared difference from the mean. And if you had 10,000 values in the set, you're going to have 10,000 squared differences from the mean, you have to add them all up, you get a sum of squared differences. And then you divide it by divided by the number of observations in the set minus one. So it's, it's a pretty complicated when you try to describe it verbally. But if you were to look at it on a sheet of paper, you would say, oh, it's, it's a series of steps. Add up all the squared differences from the mean, divided by a large number one less than the number of observations in your sample, and then take the square root. And then once you've taken the square root, bingo, there's your standard deviation. So it's, it's a few steps, but it's something that kids probably learned and then probably forget just as quickly as they learned it in, in middle school or high school algebra class.

Scott Benner 26:26
So how does clarity app like to simplify that all down? What is the clarity app looking at? When it tells me, you know, the, the standard deviation is 35? Can you like, distill it? What is it looking at to make that decision without the without the detail?

John Welsh M.D. 26:44
Oh, absolutely. So the statistics page, for the clarity app gives you some summary statistics. And just a quick little operational note, I wonder if you're able to see my page that I'm trying to share with you on the Zoom meeting? Yep. Oh, good. Okay. So maybe you should ask your question again. So we could rejoin the the post editing narrative?

Scott Benner 27:11
Oh, I just know, I was. What I'm worried. What I'm interested in is, is there's a clarity app, obviously. And it tells me, Oh, your standard deviation, or your daughter standard, if she is 35. Or some people are like, Oh, I'm struggling. And you know, my mind is 65. And I heard from a woman the other day that told me her doctor told her that anything under 100 was okay, which she very smartly was like, I don't think that sounds right. But I want to know, like, what does it look at? To tell me? My standard deviation is 34. Like, taking into account?

John Welsh M.D. 27:47
Oh, sure. Well, that's, I think I can get that one answered pretty quickly. We've got our statistics page. And if your audience wants to look at the Dexcom, clarity, web interface, there's a page all devoted to statistics. Looking right now, at my statistics for Monday, and this is every Monday for the past 30 days. So there's several Monday's in that sample, I've got a total of 1253 readings. And each one of those is estimated glucose value. And then the summary statistics, the minimum 40 Oh, that was scary, the maximum 244. So those are, those are not normal, the mean value 128. That's reassuring, and then the standard deviation 34. So to get that 34, the calculation that I just walked you through, which is look at every one of those 12 153 values, get the difference from the mean. So do the subtraction 128 Minus a particular value. You square each of those differences from the mean, add them all up, and then divide the total by 1252. And once you've done that, you take the square root of it, and it's it's 34. So there's, as I said, it's a little bit of algebra. But it's, again, the usefulness of it. 128 plus or minus 34, tells you that you would expect two thirds of those glucose readings to be within one standard deviation of the mean. So 128 minus 34 is just 90 something and then 128 plus 34 is 162. So you would you would expect most of my sugars to be in that in that range.

Scott Benner 29:41
Take for second example, I know we're going to oversimplify but describe what mean Yes.

John Welsh M.D. 29:51
Oh, sure. I mean, it's also known as the average value. So if you were to look at the NBA players As you say, Wow, NBA players are really tall. You might express that in numbers by saying the average or the mean, height of an NBA player is six feet six inches tall. So it's another word for average, it's a particular kind of average. But we don't need to talk about the other kinds of averages. Mean is usually just the arithmetic mean, you calculate it by adding up all the values, and then dividing that total by the number of values.

Scott Benner 30:31
So what I have here, what I'm looking at in front of me is 12 153 readings. There were 40 that were or is that under a certain number, those 40?

John Welsh M.D. 30:45
Oh, yeah, we're looking at these rows in the in the statistics, the number of readings, 1253 is a bottom, the minimum was 40. The maximum 244. And the mean value 128.

Scott Benner 30:59
Within within those 12 153 readings, there, the high was 244. The low was 40. But on average, this person's blood sugar was 128.

John Welsh M.D. 31:12
That's a that's a nice way to do it. And yeah, we're looking at, we're looking at my readings from the past month or so

Scott Benner 31:17
these are you Oh, my gosh, are you? Do you have type one?

John Welsh M.D. 31:21
I do. I've been living with type one for most of my life for past 45 years. And so far, so good.

Scott Benner 31:28
Show me like an example page. I didn't realize we were looking at your blood sugar. Well,

John Welsh M.D. 31:33
I yeah, you can spy on me. You can you can look at my summary statistics. Here we can we can continue with the summary statistics page. Yeah.

Scott Benner 31:43
And I'm gonna have some questions about it when you're done. But please keep keep going.

John Welsh M.D. 31:47
Oh, sure. And this is an incredibly number, it's a very useful way to get a numerical description of other numbers. And so far, so good. You know, here's, here's a guy, John Walsh, who is this clown anyway, and what is he doing talking about his glucose numbers. So John's, had a, at least one time where he went all the way down to 40. But the main value 128 is reassuring. And then we get down to some other statistics that talk about the median value, the median value is the value above, above which and below which half of the values occurred. So in my case, the median is 122. And that tells you that half of my readings were above 122, and half of my readings were below 122. So that's another measure of central tendency. The end, it's usually expressed alongside the interquartile range. And so you look at the, the value that is 75% of the way to the top, so 75% of the values are below at 25% or above it. And in my case, the the 75th percentile is 153. The 25th percentile is 103. So you can say with, with some confidence that half of my values were between 103 and 153. And those are the 25th and 75th percentiles, and the the interquartile range here has given us 50. And that's just the difference between 153 and 103.

Scott Benner 33:33
So the question here, if if Yeah, if if half of those range between 103 and 153. I'm assuming that the other half are how we arrive at the standard deviation of 34? Like, I'm assuming you need that information to to come back to the standard deviation?

John Welsh M.D. 33:49
Oh, no, no, the standard deviation, the standard deviation relies on all values. And it doesn't, it doesn't care so much about the distribution, it just cares about how far from the mean value the values are. So there's, there's there's another point that I want to make, which is the median value, in my case, 122. The mean value is 128. A lot of times those are very close together. But sometimes they're very far apart. And there's some special circumstances where the mean value is much, much different than the median value. And we can talk about those if you think it's interesting.

Scott Benner 34:32
I wonder what I do want to know is, is how much of sensor like so you know, I've my daughter has been wearing a Dexcom since seven, maybe Dexcom, seven or seven plus back then. And so, obviously, we see things at every generation, improve and improve and improve but I could still say that for Arden in the first number of hours. You know that you put on a new sensor it's not as I don't know, it's not as tight with its understanding of your blood sugars that maybe is on, you know, day two or like, you know, or there's a sweet spot through the middle where it's crazy. Arden uses a Contour Next One blood glucose meter, which is incredibly accurate. And for a large part of our sensor where the meter and the CGM are spot on with each other there within a couple of points. And when you're managing type one, there's a ton of like, good feeling about that, knowing that, you know, she wakes up in the morning, and it says her blood sugar is 96. Now whether or not her blood sugar is really 85, or it's really, you know, I don't know, 104 to me is of no real consequence. It's in that space. And I'm thrilled with that. Then I put it on, and I don't have diabetes. And I wake up and it says my blood sugar's 94. And I think, Oh, my God, I've been fasting all night. And I'm 94 and I do a finger stick. And I'm 85 It's amazing that those seven points to a person without diabetes is, it's a different impact than it is to a person. Right? And so it is seriously like, I wake up in the morning, 94 I'm like, Oh, I guess that's it, I'll just eat lettuce till I die. But you know, like, like, it's just, it feels like that immediately. And, but I take that same information coming from my daughter, I am completely comforted by it, not just comforted by it. But it leads me in my understanding of how to manage her insulin and her health and everything. My question is, is that knowing that the sensor is a little, you know, on the on the edges, it struggles a tiny bit more than it does in the middle? Is there something about my data that I can't look at to micro? Like, do I have like, how much time do I really need before? The inconsistencies in the data? And the consistencies in the data bounce out to where it doesn't matter that it's not all? Perfect? Does that make sense?

John Welsh M.D. 36:53
Oh, that's, yeah, that is a very common question. And I don't have I don't have a good answer, I can tell you how I deal with imprecise measurements in my own life. And, and I've got, I had a wonderful bike ride yesterday, here in San Diego, and I've got a fancy bike that has a built in speedometer, it's based on how many how many times the will completes a revolution. So there's a speed sensor built into the into the wheel. And based on that, you can calculate your speed. And I've got another fancy thing in my phone where you can get your speed based on satellite data from your global positioning satellite system. And and I looked at it and I found myself chugging along the road and and the the speeds, you want to guess if they were exactly the same. No, they weren't. I was going 20 miles an hour. If you look at the wheel sensor, I was going 21 miles an hour, if you look at the GPS coordinate, so measuring your blood sugar and seeing one number and then looking at your CGM and seeing another number. And and it's frustrating, because there's no good way to to know how excited or how concerned to be about discrepancies. There's always going to be discrepancies. It's a rare thing when when the blood sugar tells you you're 105. And then you get that 105 From the CGM. And I don't want to give medical advice over the phone like this. But there is the possibility that you could calibrate your your G six and based on the your confidence in a blood glucose meeting reading, you could say, oh, my GSX is reading a little bit low. I'm going to calibrate it, and then bring it back into better alignment with the with the blood glucose meter. So I know it's frustrating. I wish I had a better. I wish we had better devices for measuring glucose with even more precision.

Scott Benner 38:59
They're amazing. You've had diabetes forever. You know how amazing this stuff is. Just because you work there doesn't mean you can't say that. And it's actually been very interesting for me because of the pro doesn't allow you to calibrate or at least I just had to go with it. And it really sure it was it was it was interesting to live in the space because for my first maybe 18 hours, the glucose monitor was reading about 10 to 12 points higher than what the finger stick was was pretty consistent for those few hours. And I found myself thinking if this was my daughter, and I put a brand new CGM on her that thought she was 110 when she was 91. I'd be like, Oh my god, this is the most amazing thing ever. I love this thing. It's so amazing. Except you know, and I didn't have diabetes and I was like, Is my pancreas not working? You know, like it's very like it's a it was just such a very different thing. But beyond that initial feeling. It really did just cement my idea of how much I love this technology. And and because I can remember managing my daughter's blood sugar without a glucose monitor. And to think that she'd be stable at 110 or 91, ever for hours and hours at a time is insane, but it just never happened. But over these last few days, we've been eating the same meals. And her care is so dialed in, due to a large due in large part to the information that comes back from the Dexcom that her blood sugars and mine are largely matching before and after meals.

John Welsh M.D. 40:35
Congratulations. And that's just That's wonderful news. And, you know, it's, and I'm totally with you, we we can talk about the battle days when when you had to make a make a guest and a lot of times it was not a very good guess based on just a urine dipstick and you could say, oh, I'm spilling sugar into my urine and I need more insulin, and you would have to make a guess. And some of the highs and lows were pretty scary. And, and people you know, sad, sad to say that people are still dying from insulin overdoses, insulin, let me check, it's a poison, and it can kill you. And there's, there's a lot of downside risk to insulin, even though it's a huge blessing, we're coming up on the 100 year anniversary of the commercialization of insulin. So we're all going to celebrate and be thankful for the commercialization of insulin and the fact that we're not dead. But it's, it's a tough disease. And you wouldn't, you wouldn't wish it on anybody because it's really a lifetime burden. But I'm really pleased.

Scott Benner 41:43
I just had a conversation briefly online with a woman this morning, who even with all the technology gets incredibly low every day. So I was turning her on to the podcast as like, this doesn't need to be you're just you're not using your insulin correctly. And it's not that it's not that difficult to figure out how you know, so I turned around, I was like, Listen, I have an idea. Can I hit you with some questions and see if you have answers to them. These are questions that came from listeners. And sure, I'm not asking you now I understand you're a doctor. But I'm not asking you that way. I'm asking you based on this information, this data and how much you've seen it? Do you see? Do you see information in the data that would help people with the things that they're concerned about? So the first one simple? Do you know what a non type one standard deviation usually is? Is there a range where it usually falls?

John Welsh M.D. 42:34
For example, somebody with type two?

Scott Benner 42:36
No, no, no, just someone who doesn't have diabetes at all. Do you know where like, like, where? Oh, yeah.

John Welsh M.D. 42:42
Yeah, so we've got a we've got some data from a big study of 153 people without diabetes. Their standard deviation was was seven,

Scott Benner 42:55
seven. Okay. Okay, is there? Let's see how I want to say this here. So this is a type one question somebody is somebody's asking. If there's a lot of variability within the good range, say like, like 70 to 120, this person's kind of bouncing between 70 and 120. There what they want to know, for their health? And maybe you don't know, but would they be better off sitting at 120 than they would be from going up and down between 70 and 120?

John Welsh M.D. 43:27
Oh, I think so. And there's, this kind of leads into another number that you can get with the, the summary sheet, it's the ambulatory glucose profile is something that Dexcom has. It's, it's not exclusive to Dexcom, but it's called the AGP. The ambulatory glucose profile, what

Scott Benner 43:46
my things John, don't know, you really got to get creative in charge of in medical in general in charge of the stuff that that goes back and touches people. If you look at glucose for I'm sorry.

John Welsh M.D. 44:01
There's, there's a lot of syllables there. And there's a whole industry for you know, if you come up with a new drug, you have to hire a marketing firm to come up with a name for your for your new drug. But there's a digression for you. Anyways, is the numbers. The numbers that are on the top line of the ambulatory glucose profile, the average is there, the time and ranges there. There's another number here, which is the standard deviation, and then the coefficient of variation. And that's a number that I think has has a lot of usefulness because it tells you how big is your standard deviation compared to the mean value. And there's some clinical implications for that as high, high coefficient of variation is dangerous because it puts you at very much increased risk for dangerously low events for for hypoglycemic misadventures. So the the coefficient of very Question again looking at my own data for the past 30 days, my coefficient of variation 31.3. And is that good or bad or indifferent? It's, it's higher than I'd like it. But is it dangerous? And there was a fun article. Fun, I don't know, but useful anyways, the useful article came out a couple years ago, and some folks in France in the UK came out with an article in diabetes care. And they they said, CV coefficient of variation of 36% is the threshold to distinguish between stable and unstable sugars. Because beyond this limit, the frequency of hypoglycemia is significantly increased. And, and if this, my own CV here 31.3%, that's reassuring, it's low, which is good. And it's less than 36%, which tells you that I'm, I could still go low. But the fact that this CV is less than 36% is reassuring. I went to see my endocrinologist and he said, Hey, John, keep up the good work. You're probably not going to die of hypoglycemia before the next time I see you. And I was so alright. Yeah.

Scott Benner 46:15
John, you know, it's interesting that I see with my daughter who is, you know, a woman, a burgeoning woman, is that with our care, the same exact care we use on weeks and days where she's not impacted by hormones? Arden's standard deviation is 24 ish. But oh, my gosh, that's terrific, thank you. But that's not why I'm telling you that what I'm telling you that is because although I appreciate it, why I'm telling you is because that when she is impacted with hormones, the run up to her period, for example, her deviation jumps up to 45. and N are no holes aren't different, her meals don't vary. It just, she needs more insulin. And it sometimes takes a couple of days for you to realize that that's happening. And then once it's happening to remember, it's happening to remember, like, you know, oh, you know, my ratios are telling me this much insulin, but it's four days before I'm gonna get my period. So it needs to be more, it's difficult to recall all that, you know, constantly. But it's fantastic. It's interestingly fantastic to see because if Artem was a boy, I think I would have a son with a with a standard deviation, pretty consistently within 24. Until they hit I'm assuming puberty as well. But you as a, it's just very interesting to look at your 30 day chart here. You're I know we're talking about so you don't mind, but your standard deviations 42. And you're saying it's not where you want it, but it's also not terrible, like people are trying to understand on the outside, what's the number that keeps them healthy? And what's the number where they think, you know, something else is going to happen? It is very simple in people's minds when they think about these numbers, like what am I gonna hit? How do I get to it?

John Welsh M.D. 48:03
Oh, yeah, yeah, and I think if the the more useful number and I think the one that is very convenient to have as a as a goal, and is is the coefficient of variation. And that's just a ratio, it's the standard deviation divided by the mean. And aiming for something less than 36% would be would be a reasonable would be a terrific goal. And if I were still seeing patients, I would say, Here's your, your coefficient of variation is 40%. Let's look more carefully at the trajectories or the, this is called a modal day plot. And I'm sure your audiences has seen this, it lays out the clock time here on the bottom axis, and then the glucose values on the vertical axis. And you can see the median value here and the bold line right in the middle. And then you can see the shading here, the blue shaded area covers 50% of the values and then the area in between the dotted lines covers 90%, or I'm sorry, 80% of the values. So what what I'm looking for what I wouldn't be looking for if I were looking at somebody else's plot is a smooth ride. And sometimes you can identify parts of the day where the ride is pretty bumpy. For example, after lunch, if you're having lunch at your desk and you're not going for a walk and you're having the third slice of pizza, you might see spikes after lunch or dinner. Or you might see plummeting lows after breakfast if you gave yourself too much insulin for breakfast, and fun to go with breakfast. So I'm not the standard deviation. If you're always cruising around a relatively high number like 170 The standard deviation is going to be bigger than if you're always cruising around at a much lower number like 100 And so, um, the number that I think is more reasonable to target as a therapeutic goal is the coefficient of variation.

Scott Benner 50:09
Okay? Under 36.

John Welsh M.D. 50:13
Yeah, that's, that seems to be the magic number. And that's the consensus and, and it's, it should be achievable if you if just pay attention to parts of the day where you might be having a bumpy ride, you can look at your behaviors, look at your response to your behaviors and say, You know what, I think I will, instead of having three slices of pizza, maybe I'll just have one. So CGM can be a wonderful motivator. It can inform people it can motivate and reward good choices. So I'm you can tell I'm a huge fan. I love evangelizing this stuff, but you can learn from, you can really learn a lot from the numbers. And the numbers can tell you, if you pay attention to him, to the numbers themselves, and also to the summary statistics, like the standard deviation, you can learn quite a lot from him.

Scott Benner 51:03
I'm a huge fan, I don't understand that, obviously, nearly as well as you do, but I know what it tells me. So for instance, after Ardennes, my, my poor daughter, one day is going to listen back to this and be like how much did they talk about my period on that podcast, but after so the lead up to her period, there's like three or four days prior to it, she gets, you know, all of a sudden, she needs way more insulin. And then in the first day or two of it, it happens still, but then there's a moment where it levels like whatever happens is done. She's still the periods still happening, but the hormonal impact seems to be going out of her body. So let me give you an example. Because it just happened yesterday for the last 24 hours. Arden's estimated a one, C is five, and our standard deviation is 24. Per average, blood sugar's 98. But if I just go back seven days, through her, you know, through this lead up to this period, estimated a one C 5.8, standard deviation 43, average blood sugar 119. It's an it's just the hormones, it's the lead up to her period. And so it's fascinating and not that you don't know but and then there's another time of the month where it happens again to her for four or five days. But just those just that week, and then that other chunk. So basically what I think is about 789, probably 12 or 13 days of the month, takes what would normally be I think, an SD and like I said in the mid 20s and an A one seat closer to five than six, and it moves her agency more towards like Hurray, once he pretty much sticks at like 5.6 it doesn't move very much. Okay, it's just very, I don't know, like I don't know what I would do before this information like no lie prior to it. I wasn't a different person. And we were not good at this at all. You just diabetes in general her hurry once these were in the eights and I finally got them into the sevens just by having, you know, better tools and insulin pump and a glucose monitor. But I still didn't understand that enough to turn it into real, like success, you know, like, like the idea of knowing when to Bolus and that sort of thing. But I know all that from this data now. And it's sure incredibly beneficial.

John Welsh M.D. 53:27
Absolutely. Well, I'm, I'm with you 100% on that. And I think for my own my own experience was in the bad old days before CGM, I was poking my finger and making a lot of guesses. And it really got me interested in how the body works. And it was a great, great motivator all through college. And that was part of my story when I was applying to medical school and I'm not alone. There's a lot of a lot of physicians who specialize in in Endocrinology and Metabolism who also have type one diabetes. So my own story is, is hey, this is really interesting. I want to learn about it. And I want to go to medical school and what do you know, the medical school here in town said all right. All right. Coming to medical school, and you can learn you can learn quite a lot in medical school about about the disease itself and about how you measure how you measure sugar and measure all the other important things that we care about in metabolism. So it's for me anyway, it was not just a life changing event when I got that diagnosis but it also sort of defined my career path toward a toward becoming a physician and also to to working here at Dexcom

Scott Benner 54:40
Yeah, so that's fascinating and I'm afraid I'm gonna start talking to you and then lose track of what we're supposed to be doing because questions I almost answered ask them and I was like, No, don't do that. What cut when you when you when this data is pulled together, given that there are you know, Blood Sugar legs and meters aren't perfect and nothing's perfect. What? What's built in to deal with the error? Like, how does it come to the number and? And take the the imprecise pneus out of it? Is it like, like looking at yours? For example, your standard deviations? 42? What if if if a Dexcom was absolutely perfect if there was a you know, if it wasn't technology, but it was it was your, you know, I don't know, something organic that could know 100% For sure. What all these measurements are on your glucose all the time? How far off? Do you think that number would be? If you had perfection? Does that make sense?

John Welsh M.D. 55:41
Oh, yeah. Yeah. You're You're hypothesizing that there is some there's no real answer. Yeah, there is. There does exist some true number. And we're always trying to become more more accurate and getting closer to that true number. We are, we're never going to get there. You have to stipulate that we're always going to have some, some wiggle and some imprecision. And that's, I think true. Because nothing on this planet is perfect. And we have to, if we get to heaven, and then everything is perfect in heaven, if we ever make it there.

Scott Benner 56:17
That'd be my first question. When I get there, I'll be like, what was my kids? Really?

John Welsh M.D. 56:24
Yeah, so that's a whole nother line of inquiry. But we're probably certainly within 10%, I think I'm confident that we're within 10%, I'm less confident that we're within 5%, I wouldn't be surprised if we were within 3%. And I would be really astonished. If you told me it was within 1%, I would be astonished. So I've got some confidence, the for the 10% precision. And I've got some optimism that we can usually get within 5% of the true value. Those are just speculative numbers. Because there's no such thing as a perfect value, even if even if you use the gold standard. We could quibble about any reference instrument. And this is one of the things they drilled into us during my residency training in laboratory medicine, which is, is there such a thing as a perfect measurement? No, not until we all die and go to heaven. While we're living on this earth, you have to deal with imprecision and uncertainty. But I think we're pretty good. And just for purposes that we care about managing managing diabetes and living a long happy life, I think we're we're well within the realm of of good enough.

Scott Benner 57:40
And outcomes are good based on what we noticed. Does that mean, from what you just said, if at a 42 standard deviation? Is it possible that your standard deviation is somewhere like 36? Or possibly like, I don't know, 48 or 47? Or is it more likely it's lower? Or more likely, it's higher? If it's Is there a likelihood that it's more one way than the other?

John Welsh M.D. 58:05
Oh, yeah, the standard deviation just tells you how, how spread out the distribution is. And the the true standard deviation could be higher or lower? Because all the numbers that the standard deviation depends on could actually be incorrect. So I think, yeah, that's a tough one. Let me let me think about that. Yeah. I'm looking now at this. Looking now at the standard deviation and this famous bell curve, the you know, what the, if I'm understanding your, your question correctly, could the standard deviation be something different?

Scott Benner 58:51
You use me as an example, in my situation, right. Now, if I put on a new CGM, every 10 days, I wear three sensors a month, nine sensors over a three month period, if I look back at my 90 days, my standard deviation, if my if my sensors reading just 10 points higher for the first, I don't know, just say 36 hours of every one of those things. Am I more likely to look higher than I am? Or lower than I am? Because of that? Higher right?

John Welsh M.D. 59:19
Oh, yeah, I think I think you would have a high. It's called a high bias. But your earlier question, could the standard deviation be something other than the calculated result? I? I think the answer is no. If if you give me the numbers from one to five, could the total be something other than 15? And I would say no, the total of the integers from one to five is 15. And if you give me a set of numbers, I can calculate the mean and the standard deviation. So I think the calculation that we've done here, resulting in this standard deviation of four 32 If we did the math correctly, then the standard deviation is 42

Scott Benner 1:00:04
is the I'm sorry, there's the algorithm that's making this decision. Does it scrub anything? Like, you know, like a compression load? Does it see that and go, we're not going to take this into account, does it do any of that kind of stuff?

John Welsh M.D. 1:00:18
Oh, yeah. And that's, I think that's true. That's got to be true for Medtronic, it's got to be true for Abbott, it's got to be true for sensing Onyx. And also for Dexcom, we've got, we've got algorithms, the signal that we are measuring is actually a voltage. It's a, it's so I'm sorry, it's current. So the current is very low. Current, usually measured in amperes. And we're dealing with billions of an ampere, I think, nano ampere, or Pico amperes. So incredibly small currents. And the challenge for the engineers is to take that very small electrical current, and translate that into a number that makes sense and number of milligrams per DL. So that requires some, some engineering talent. And it requires an algorithm. And I think that's part of the secret sauce that we have here at Dexcom. Medtronic, I'm sure they have a algorithm, which is similar, but slightly different. And the same for Abbott. And the same for sensing Onyx. And that's true. Whenever you're measuring something and saying what you're measuring, you know, for the example of your oven, if you're cooking, you're making your cookies, you're measuring temperature, what you're really measuring is the height of the mercury in the thermometer. And the trust is that that's a good representation of your temperature. And then going back to the bicycle speedometer example, what it's really measuring is how fast the wheel is turning in, you're translating that revolutions per minute into a speed. So it's a challenge to take a very small electrical current and turn it into a glucose value. And but that's, that's what we do. And I think that's what all the manufacturers have to do.

Scott Benner 1:02:07
It's amazing. And listen, we're one rabbit hole away from wondering if we live in a simulation. So let me ask a more concrete question. Ready, John? John, in 30 more minutes, we're going to be like, we're probably in the matrix. So just a real quick when Canadians or people who are using other scales, did they multiply their standard deviation by 18? To get their answer? Like, this person gave me an example so that their last standard deviation in Canada was 1.62. They multiply that by 18. To get the number that the way we're talking about it right now.

John Welsh M.D. 1:02:46
They sure would, yeah, so the the units for standard deviation, the standard deviation here in the US as milligrams per deal. outside the US, the standard deviation is millimoles per liter. And the conversion factor is is 18. So the standard deviations would be less by a factor of 18. In places where they use millimoles per liter, the end and that's a good point, thank you for bringing it up. And the point is that what would not change is the coefficient of variation. So if you were to take all my numbers, or if I were lucky enough to be a Canadian, and measuring my sugars and millimoles per liter, I would still have this coefficient of variation of 31.3%. That would not change, because you're dividing milligrams per DL in the numerator, milligrams per DL in the denominator, and those units would would cancel them out coefficient of variation. There's no units for that. It's just a percentage. I'm

Scott Benner 1:03:50
glad you said that, or some person, Saskatchewan was gonna take their coefficient and multiply it by 18. And that's great to know. And thank you for knowing it. By the way, when I asked the question, I appreciate that.

John Welsh M.D. 1:04:04
That's a good one. You know, if you got to, if you were to travel to Japan, you would trade your dollars for yen and you would find yourself 100 times more wealthy. Because you can buy you can buy about 100 yen with $1. But wait, everything's 100 times more expensive so

Scott Benner 1:04:21
well, so let me make sure I'm understanding exactly. So coefficient of variance, or variation we're talking about under 36 Really lessens your possibility of low blood sugar's standard deviation shows us how much stability we have, right like by keeping our variability lower. What is the measuring?

John Welsh M.D. 1:04:45
Oh, in terms of our health Oh, yeah, a one C there's I love a one C I want to strangle it and drown it in a bathtub. i A one C has been with me for a long time. It's about biomarker, it's hemoglobin obviously is the protein that fills up your red cells, it's got the red color, because it's got iron in the middle of it, it's got an iron atom. And it's the same color as rust. The hemoglobin a one C, the a part of it refers to the a chain. There's an a chain and a B chain. The hemoglobin a one refers to the first amino acid in the a chain of hemoglobin. And the C refers to the isoform, if you want to know refers to the isoform, of altered hemoglobin that travels on chromatography. Anyway, that's that's the long answer. The short answer is that hemoglobin a one C is a abnormal form of hemoglobin that has a sugar atom stuck onto it. And having that sugar, I'm sorry, sugar atom, it's a sugar molecule stuck onto it. And it's a nice indicator of how your ambient glucose concentrations have been going over the past two or three months. The downside of having a high a one C is that hemoglobin a one C molecules behave a little bit differently. And they're also markers that things are going haywire in other parts of your body, other proteins in your vasculature in your kidneys, and your liver might be getting decorated with sugar molecules when they really shouldn't be. So having having a very high hemoglobin a one C number tells you that quite a lot of your hemoglobin molecules are traveling around with this kind of gooey sticky sugar molecules stuck onto them. As I mentioned earlier, I it's it's not my favorite biomarker. What's your favorite biomarker, John, there's there's ways that you can fool the hemoglobin a one C test, and we can talk about those. There's some some people have problems with red cell production or red cell destruction that would throw it off. So you can really be misled by an A one C number, it can be too low. And you can say, Ah, you're doing just fine. Your a one C is in the normal range, when it should be much higher. And then on the flip side, you can see in a one C, some people have a one c values that are unexpectedly high compared to what their average glucose values are. So it can it can mislead you in a couple of different ways. I'm a much, much more enthusiastic about just using the average glucose value that you get from a CGM system to assess the adequacy of your glycemic control.

Scott Benner 1:07:50
Is that okay? You know, it's interesting, you made me think of last year I suffered, I had my ferritin was very low. And it's it. You know, at first everyone, the doctors thought I had cancer and we did all these things. And it turns out, I just had low ferritin. And so I got an infusion of of whatever they call it, it's I can't think of it now sit iron and it's a it's a mix, it looks like a rusty bag of water and back up, but during that time, what I was told was we can't trust your Awan see right now, because of your low ferritin. And I was like, huh, dig too deeply into it. But it's something you just said now made me think of it again. And then it made me think about how, you know, measurements, right? And you always get, you could use anything. Here's an example. My daughter has hypothyroidism. But when we first figured it out by her symptoms, the doctor's office looked and said, well, she's low, but she's in range. We don't want to do anything. And we made them give her the hormone, then because we had an experience with my wife who was low in in range, and they would never help her and it really hurt her over time. And so it made me wonder, especially for, you know, women in the menstruation age, is it possible that they have an A one see that looks better than it is if they have lower ferritin just like,

John Welsh M.D. 1:09:14
there you go. There you go. There's that's another of all the ways that a one C could be misleading. That's, that's, that's one of them. And I'm thinking, my own experience, I used to be a really avid blood donor. And I thought, oh, you know, what if I if I were to donate two units of blood, and then wait around for a couple of weeks and then get my a one C measured, that would falsely lower the a one C because as soon as I donate two units of blood, my my bone marrow is going to wake up and say, oh my gosh, John, you did something either stupid or crazy or really altruistic. By donating those two units of blood. We have to ramp up production, and we're going to flood your system with brand new red cells. So after two weeks after donating the blood, I would have a population of red cells, which were relatively young and had not had a chance to get glommed on to by the sugar molecules. And my agency would be falsely low. And I say, Yep, I can sure game the system that way. And that's the same for people who undergo acute blood loss, the A one C would be falsely decreased within a couple of weeks, once the red cell production line kicks into gear. And then people who have shortened red cell lifespans, there's there's some conditions, a lot of syllables, but hemoglobinopathies, if your hemoglobin, if your red cells are, are not up to the task, and if they're prematurely destroyed, you would have a very low a one C, and it would be misleading if you were trying to manage diabetes based on that.

Scott Benner 1:10:55
Okay, so Okay, so you as a person who's had type one for a long time, and is a physician, and I think we didn't really dig into it. But it sounds like you used to help people with type one as well, when you were practicing, is that right?

John Welsh M.D. 1:11:09
Oh, you know, indirectly I specialized in laboratory medicine and also anatomic pathology. So I would, I would look at disease, and I would measure disease and then I and then I went to anyway, so I never directly took care of people who were who needed insulin management.

Scott Benner 1:11:27
But for yourself, then let me just ask yourself that I guess it makes more sense. With your background, and how much time you spent digging around in this data? How do you measure your success? Like which one of these? I know there's going to be a grouping of them here. But but can you tell me what you look at every time you look at your data, just when you want to look and go, oh, I need to do a little more a little less? Like, what what is it your? Where do you focus? And is there any way to put them in descending order?

John Welsh M.D. 1:11:57
Oh, um, well, I am I'm getting old, every if you wait long enough, everybody's gonna get old. I used to worry quite a lot about my agency. And now I I really don't care I what I focus on mostly is the average glucose. And the the example that we're looking at now is 133, which, which is wonderful. And beyond that, I try not to rank myself, I try not to compare myself to my peers. Here at Dexcom. We've got some, some very talented folks with type one who are even more dialed in than I am. If it if it seems like I know what I'm doing, there's people down the hall who are even better. And then there's people in the community who who are need some advice. And that's the mandate, I say, You know what I'm I'm doing fine. But let's, let's see if there's problems that I can address. So I look at my average sugar, I look at the time high and low time and range. And the example that we're looking at 85.9% is pretty good. And then I also look at the the amount of trouble and strife that it causes me and I try to minimize that. I try to settle in on a good routine. That doesn't cause me too much trouble and strife. And finally, after 45 years of I think I've found a good routine for managing my own diabetes. That's

Scott Benner 1:13:23
amazing. That's I think what people need to hear too, it's funny, as you were saying all that I was looking at, at my daughter's nine, like I went to 90 days on her information, because you said average blood sugar. And her average blood sugar has been 115 over the last 90 days within an estimated a once a 5.6. But her standard deviation over that time is like I said, it's it's 45. And is that should I be more concerned about that?

John Welsh M.D. 1:13:54
Well, here's, here's an important question. And it relates to the time that she spends really low and I wonder if there's numbers for either time less than 70 or time less than 54 because because those are those are things that can cause trouble in a hurry. Being being less than 54 is kind of dangerous.

Scott Benner 1:14:14
I have I have her range set as 65 to 120 She's 9% low 54% in range and 37% high but she does not get for the most point we don't go over about 180 ever and under 55 I don't think happens twice a month maybe for long periods of time not like under 55 and falling where people are running around the house you know looking for the will and stuff like that just you know like a dip down that you caught a little too late and and it'll go to 55 and hang and come back up but we don't let her sit under that number. But I look at her standard deviation all the time and I I'm always just like, ah, that's where I need to do better. But like I said, you know, for half of the month, that standard deviation is 24. And then during her, you know, her hormonal times throws throws that number off, like, is that number less scary? Because she's a girl than it would be if she was a boy. I know. That's a weird question. But you don't I mean,

John Welsh M.D. 1:15:25
well, I, I don't know if I'm, I'm gonna take issue with your premise. I, what you told me was, is that number scary? And I? I don't think so. I don't think that's a scary number at all. Just based on the fact that she is so dialed in, and that she has almost continuous awareness of where she is. And she's got good access to to her family and to you and good access to to Kandi if she needs it. So it doesn't sound like she's in harm's way at all. The thing that you know, there's there's some things that are absolutely dangerous. One is one is going low, and finding yourself waking up with a crowd of people trying to resuscitate you is a terrible misadventure. Because you, you went low and you ignore the symptoms. And guess what, you had a seizure, you lost consciousness, you bumped your head. And now the EMTs are out. That's a scary misadventure. So I think if you told me earlier, she's, she's had it for quite a long time,

Scott Benner 1:16:34
she was diagnosed, too, and she's going to be 16 next month. Okay.

John Welsh M.D. 1:16:39
So 14 years, 14 years into it. Hopefully all the autonomic counterregulatory hormones are intact, and I hope they stay that way. So the hypoglycemia awareness, I hope is fully intact, and the counterregulatory hormones that that would kick in to bring her sugar back toward the normal range, I hope are intact. The, the coefficient of variation, you mentioned earlier, the standard deviation for your daughter and remind me of the coefficient of variation.

Scott Benner 1:17:11
Oh, let me get it for you. It does similarly, change with, with what's happening in her I have it at 90 days as 39% in the last 139, in the last week, 36%. But if I go into just the last three days, where like I said, the impact from the hormones is gone. It's 30%.

John Welsh M.D. 1:17:35
Okay, wow. So sometimes, sometimes it gets above that arbitrary number of 36%. So there's some stretches of time where the variability is, is in excess.

Scott Benner 1:17:48
And it's, it's important to note that so my daughter now for over six years has had an A one C between five two and six, two, and we don't restrict her diet in any way. So she'll have pancakes, you know, for breakfast on a Sunday morning. Just as easily as this morning I said she had, you know, an avocado, avocado toast. And so you know, she she's all over the place with what she eats. So we'll have nights where she just has a big salad for dinner, and nothing else. Last night, she had some turkey and small amount of potatoes. But when dessert came out, she wasn't interested. And so she's I call I would call her eating healthy and varied and not excessive. She's not a sweets person, like she's, she'll Trick or treat, but that's the hangout with our friends. And she comes home and doesn't know what to do with the candy. But you don't like that. That's sort of an idea. But, you know, I'm trying to talk through her to everybody so that everybody can kind of get a feeling for how they should feel about this information for themselves personally. Sure, yeah.

John Welsh M.D. 1:18:53
Well, there's, there are some things and we've we spend a lot of time looking at data here we've got some data science, people who built our career on looking at data, there's a couple of comments that might that might be helpful and one is to to look for opportunities to lower the standard deviation lower the coefficient of variation. One is to see if there's any evidence of overtreating highs or lows. And sometimes those really jump out if you look at the, the hourly plot, we call it the modal day plot. Sometimes you'll say, Oh, here's here's something where I know I know where I went sideways on this. I know I had the the big snack after lunch. I shouldn't have oh, there were free doughnuts in the conference room. I should have said no to those doughnuts. So sometimes there's opportunities for looking at your data, not the numbers but just looking at the the image of the 24 hour stretch of daytime you say wow, there's a big spike there. In the early morning hours, maybe I had too much snack before I went to bed. Maybe I have too much my own case, I had a habit of taking too much fast acting insulin to cover breakfast, and I would always go low around nine o'clock in the morning. So being looking at the data, not just as numbers, but as a graph can be very helpful. And it can reveal opportunities for making adjustments. And if if the standard deviation is in, in the high range, if the coefficient of variability is in the high range, then it deserves some some careful consideration about Wow, this is a bumpy ride, are there any particular times of the day that you would like to address with your end might be really amenable to making thoughtful changes?

Scott Benner 1:20:51
Can I ask, given how the numbers are calculated? If? How much is that? What's my question? Are any of the numbers based off of the the range that I've set up? So keeping in mind that my daughter's range is on my phone, it's 65 to 120. On her phone, I think it's 70 to 130. And so on her phone, which is the one that you know, her clarity accounts connected to and everything, if my daughter's blood sugar is quite literally, between 75 and 110 for two thirds of the day, but she has two big meals that spike her to one ad. But she's not more she's not at that one ad for more than an hour and comes back down without getting low. Do those numbers look artificially inflated? If that's how it works for her sometimes?

John Welsh M.D. 1:21:48
The I think your question is, what are the numbers that you see in the clarity report or the clarity, summary. And the time in different ranges? You can, you can set those you can customize the ranges that you want to see for and you can do that in the daytime in the nighttime ranges.

Scott Benner 1:22:08
If I changed her range, this might be a stupid question. But if I pushed my daughter's high number up to 180, would her standard deviation fall?

John Welsh M.D. 1:22:18
Oh, no, it would not know the standard deviation doesn't care whether a number is in the range, the range that you set is pretty arbitrary. You can you can turn that dial up or down. The the range that you set within clarity just tells you when are you going to get beeped. And what are the summary statistics for time and range?

Scott Benner 1:22:40
The data is based off of those ranges. Got it?

John Welsh M.D. 1:22:44
That's right. That's right, the standard deviation coefficient of variation, those numbers are those are not subject to change by just changing the the alerts or the target ranges.

Scott Benner 1:22:57
Okay. And they're based off of what quote unquote normal would be. Is that right?

John Welsh M.D. 1:23:03
Oh, actually, not the the normal range I mentioned earlier than the normal range is no more than 120. And at the moment, I'm just leaning over and checking my sugar right now is it's 109. But for the most part, having having a sugar of 150 would not be concerning. I don't think for any endocrinologist, if you were to cruise around at 150, all day, every day. The endocrinology community would say you're doing a good job, you're a one C is likely close to 7%. And your risk of long term complications is close to baseline is close to what the non diabetic population would have. So that'd be very reassuring. Even if you're having a abnormally high glucose numbers. I got a I got a call once I did some lab tests and for a different occasion, and the nurse called me up and said, John, I've got some very concerning news. Your your glucose is 123. And I thought, well, what's concerning about that? And she said, Well, it's higher than normal. And I said, Well, I have type one diabetes. And and as soon as she heard the fact that I had type one diabetes, she said, Oh, well, you're boring. Have a nice day. Goodbye.

Scott Benner 1:24:24
You mean, my daughter had to give urine one time and I left the room or I dropped off and didn't tell the nurse she had diabetes. And I walked halfway down the hall and ran back because I was worried for the nurse and she was running out of the room at the same time. And I looked at and I went she has type one and she goes Oh, okay. And then she she goes back in the room. Let me re ask my question because I have it in my mind and maybe I might ask another dumb question here. Trust me. It's very boss. I'm ready. So So Arden's blood sugar does sit in the 80s for most of the time, but sure, and and like I said, Sometimes she'll hit one ad on a call couple of meals. What if her blood sugar always sat at 120? And sometimes hit those 180s? Would that make her standard deviation lower?

John Welsh M.D. 1:25:14
I don't think I don't know, I don't think you've given me enough information. To ask that question we could we could do some numerical simulations, which would be interesting, but maybe a quite a digression. I don't think we can tell for sure, just based on what you told me. So it's, it's a big question mark, right now, I'd have to punt and say, I don't know,

Scott Benner 1:25:39
that's fine. I'm trying to I can't wrap my head around my own question, which is frustrating, as you may imagine, and a limitation of my intelligence, but I'm trying to, I'm trying to decide how, you know, so. So you don't, I know, you've heard a couple episodes of the show, John, but you don't listen to the show. And I actually would like to send you a short list of episodes, and let you listen to them and hear what you think of them. But most of the people who listen to this podcast, I would assume having a one C in the fives, or I would think over six and a half, for somebody who's been listening more than three months would be uncommon. And the basic tenant of the podcast is that you don't, you don't stare at a high blood sugar, you get it back down, without causing a low and there's ways to use insulin, you know, with the data that that makes that work. So we, you know, we're pretty heavily talking here about make sure your Basal insulin is right Pre-Bolus Your meals, don't stare at a high blood sugar, you know, don't cause a low bumping nudge with insulin, you know, if you after a meal at a meal time, you know, 45 minutes after you eat. If you're 136, diagonal up, we bump it back down. Again, if you're 85, diagonal down, that turns into 80 that you think this is going to keep going, you don't wait to see a 60 you take in a few carbs, and nudge that that blood sugar back up again, it's like driving between two lines, you know what I mean? Like you don't want to swerve, you just want to kind of try to stay as steady as possible. And we talked about a lot about how to use insulin, temporary Basal rates, both positive and negative, and food in ways that keep those swings from being crazy. And yet, there are people who come back with amazing a onesies who don't get low very often, but have a couple of spikes with larger meals. And these numbers that everyone's telling them, they're super important, you know, standard deviation, they can't seem to get into the space that they want. And then they start thinking about limiting food to make that happen. And I, I think that I think this podcast has a lot of different goals. But one of them is for you to understand insulin enough that you can eat what you want to eat. And I'm not saying that everyone should run out and eat those doughnuts at the conference table. Like, that's not my point. My point isn't, I'm not a person who says, Oh, you have diabetes, you know, don't ever think of you know, don't ever think about your your health, just eat whatever you want, because insulin can take care of it. My point is that if you understand how to use insulin, then you can go off into the world. And with a diet of your choosing, keep your blood sugar's in a more normal range and extend your health. But I'm baffled a little by my daughter's standard deviation. All the other numbers make sense to me. But that one number, I can't wrap my head around.

John Welsh M.D. 1:28:28
Yeah, and and you mentioned, you mentioned the hormonal changes that come by every month and and sometimes the good control becomes more of a challenge, obviously. And the coefficient of variability goes up. And and then unfortunately, the having a high coefficient of variation gives you a higher risk of symptomatic or potentially dangerous lows. But but so it's it's especially important to have that awareness of misadventures on the low side, especially during that time of the month where the swings are, especially high amplitude. The but the goal is, as you said, I think the goal is to spend most of your time out of harm's way. And to live a long happy life where your retinas your retinas last your whole life and your kidneys are going to last your whole life and you're going to die with all 10 of your toes where they belong at the end of your feet. So it sounds like she's well on the way and especially the education that you've been giving her and the insights that she's been getting from from CGM. Sounds like they've been tremendously helpful.

Scott Benner 1:29:40
I appreciate John I just did something that I'm so I feel badly about that because you're sharing sharing your screen. I can't see my screen. And I just realized that I've had you on for an hour and 20 minutes I'm so sorry. I didn't even I didn't really enjoying this and I didn't I didn't recognize about the passage of time. I hope I haven't kept you from something here. not just being polite to me.

John Welsh M.D. 1:30:01
Oh, well, let me You know, I think I had something that I did have something else on the calendar and I hope I'm not. I mean, check my little outlook here. You can see my calendar, there's something coming up at noon, so maybe we ought to

Scott Benner 1:30:15
go is what I was gonna say, yeah, 100% I, I just looked at my phone to look at something about art and to save you. And I was like, Oh my gosh, they're gonna crucify me. I've been I've had you wait too long. Listen, this was incredibly interesting. And I can't really thank you enough for doing it. Because, you know, it's not something everyone jumped up to do when I say can I get somebody who really understand standard deviation talk was a long line of people with their hand up, you know, so I really, I genuinely appreciate this. And I have to tell you, it's gonna go right out tomorrow. I don't usually put stuff out this quickly. But if this fits right into my schedule, so you'll be able to hear yourself and be horrified by your own voice in probably 12 hours or so.

John Welsh M.D. 1:30:57
Well, that's great. So you can I hope you cut out the obscenities and the screaming and and the lawnmowers. And

Scott Benner 1:31:03
all that horrible stuff you did will be cut out now people will just hear you say that and wonder what it is that we

John Welsh M.D. 1:31:10
Scott, what a pleasure, I enjoyed speaking with you, thank you for thanks for reaching out, and I'm a dew point. Dexcom is great. I'm just surrounded by really smart people who love who are really bought into the mission. It's a good company, it's a good product, it's a good mission. And I it's nice hearing about your own experience and your daughter as well. I hope you have a long happy life with with this thing that nobody wants. But we're doing the best we can with type one diabetes, you're very

Scott Benner 1:31:39
nice, John, but to think that you're not going to get drunk back on this podcast at some point is, is not reasonable. I'm gonna get you back here at some point, we'll find out more about you and your diabetes one day. I really appreciate this. I'm going to be incredibly humble all day long after talking to you just so you know.

John Welsh M.D. 1:31:56
I realized you've got to You're the God of podcasts, though. You can go have some podcast swagger, and brag about having a wonderful podcast.

Scott Benner 1:32:03
I'll have to lean on that since I couldn't get out of algebra in sixth grade. So thank you very much.

John Welsh M.D. 1:32:08
Okay, cheers Have a good rest of the afternoon. You too.

Scott Benner 1:32:13
I know that was a denser episode than you're accustomed to on this podcast. But I just thought that having someone like John walk through these ideas was important. I took a ton from it. I'm going to listen back to this a couple of times, because I am I'm not as smart as I need to be sometimes about some of this stuff. But John made it understandable and complete. I was really thrilled to have him on I'm going to have him back someday and just talk about him and his diabetes and try to learn his story. I wish you could have heard the conversation I had with my Booker when I was like, hey, I need somebody from DAX calm to talk about standard deviation, like, really deep dive. Is there somebody over there that can do that? And she was like, I'll find out. And boom, John Walsh comes out of nowhere. Really lovely. Man. I want to thank you for listening. I mean, especially if you're still here, an hour and a half into this, you are a major geek about diabetes data. And I love you for it. Thanks so much to on the pod touched by type one, the Contour Next One blood glucose meter, and Dexcom for sponsoring this episode of The Juicebox Podcast. Please again, go to juicebox podcast.com. For those links, or look right into the show notes of your podcast player. You can clicky clicky on him right there. One way or the other. If you use my links, you'll let the sponsors know that you came from the Juicebox Podcast and I will of course really appreciate that. Hope you're all well, especially in these times. I'm thinking of all of you, and I'll see you soon.

I hope you enjoyed this episode of Best of data. Data. Duda data. People love diabetes data. This is a all time favorite episode of the people. Would you like to save 35% on this sweatshirt that I'm wearing here? Are these silky joggers? Am I rubbing my legs while I'm saying it? I'm not gonna tell you because it sounds creepy, but they're super soft, cozy earth.com Save 35% at checkout with the offer code juice box. And of course you can get 10% off your first month of therapy@betterhelp.com forward slash juice box just by going through that link. It's all you have to do. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you enjoy this conversation and you're not in my private Facebook group, it's absolutely free and I think you would love it Juicebox Podcast type one diabetes on Facebook private group 35,000 Plus members. That's over 35,000 members, tons of conversations, opinions, perspectives, and great conversation absolutely free. Go check it out.

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#866 Best of Juicebox: Diabetes Pro Tip Newly Diagnosed or Starting Over

First published on Feb 25, 2019. Diabetes Pro Tip: Newly Diagnosed or Starting Over is the first in the now 25 episode Pro Tip Series. Find them all at Juiceboxpodcast.com 

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends and welcome to episode 866 of the Juicebox Podcast

Hey everybody, welcome back. Today is another episode in the best of Juicebox Podcast series, and today we're going to revisit episode 210 diabetes pro tip newly diagnosed are starting over it originally aired on February 25 2019. In this episode, Jenny Smith and I begin the Pro Tip series that you now all know so well. By the way, if you're looking for that Pro Tip series, you can find it at juicebox podcast.com, where diabetes pro tip.com And of course, right here in your podcast player. While you're listening today, please remember that nothing you hear that Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. Are you a US resident who has type one or the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox. Join the registry complete the survey. When you complete that survey. You are helping type one diabetes research to move forward right from your sofa. You also might be helping out yourself and you're supporting the podcast T one D exchange.org. Forward slash juicebox. Today's episode doesn't have any sponsors. But I want to remind you that if you're looking for the Omni pod five or on the pod dash, you should go to Omni pod.com forward slash juicebox want to get that Dexcom G six or that brand new Dexcom G seven dexcom.com forward slash juice box. How about the brand new Contour next gen blood glucose meter contour next.com forward slash juice box. Start your day off the same way I do with a delicious scoop of ag one from athletic greens, athletic greens.com forward slash juice box. The T one D exchange is a fantastic organization that helps people with type one diabetes and I'm speaking at their next event. Check out their website T one D exchange.org. Forward slash juice box. You can get your diabetes supplies the same way my daughter does from us med us med.com forward slash juice box or call 888-721-1514 Would you like to use the same glucagon that my daughter carries? You can G vote glucagon.com forward slash juice box. Wow, there's a lot of advertisers. This is why I spread them out throughout the week cozy earth.com Sleeping on cozier sheets this sweatshirt is from cozy Earth super soft and comfortable. Everything at cozy earth.com is 35% off when you use the offer code juicebox at checkout and hold on. I can't tell you about that one. There's a new sponsor coming next week. But I'm not just talking about it yet. So you'll check back and find that. All right, thank you so much for listening to all that. Now let's jump into Episode 210 newly diagnosed or starting over from the Pro Tip series. This is Jenny Smith and I in 2019 Making the very first episode of the now very famous diabetes Pro Tip series from the Juicebox Podcast.

Welcome to the Juicebox Podcast I'm your host Scott Benner. I first interviewed Jenny Smith, the CDE from Integrated diabetes back in season one on episode 37. At that point, Jenny and I were just talking about different management ideas. But it was then that I realized how much we agreed about type one diabetes, and the management of the disease. I brought Jenny back on in Episode 105. And we really drilled down about a onesies what they were and what they weren't. After that second interview with Jenny, I decided that one day I would have her back on to discuss all of the diabetes management ideas that come up on the show. I wanted to break them down into small categories, something that was easily digestible, where we'd stay focused on just one idea. I wanted to create something that you could come back to hopefully learn from and if you found useful share with others simply and so with that in mind, I give you the first in this 10 part series, diabetes pro tip for the newly diagnosed Pro for those wanting to start over with Jenny Smith CDE

Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And Always consult a physician before becoming bold with insulin or making any changes to your medical plan. If you're a newly diagnosed person with type one diabetes, or the parent of someone who's been newly diagnosed, what do you think the first things to understand are?

Jennifer Smith, CDE 5:29
The first things to understand beyond the glucose values are, what does insulin do? How does it work? I think that's it's a huge one. That is it's under, it's under emphasized, I guess is the best way to put it. Many people, especially adults who are diagnosed are kind of given a this is your insulin, this is the dose to take and kind of go experiment at home. I feel like that's kind of the way that it is. And I think insulin is a first most important thing to really understand. How does it work? What's What's the purpose of it? How is it supposed to kind of finish working? And what is the effect for you?

Scott Benner 6:17
Okay, and so what are some, like bare bones ways to come up with those understanding. So I think, obviously, if you have a CGM, it becomes different, right? If you have a CGM, you can get yourself at a stable spot where you haven't had insulin or food for a while. And just give yourself an amount of insulin and see how it moves you. Let's talk for a second about like old school, do you still teach people that they need to do Basal testing?

Jennifer Smith, CDE 6:43
In a general way? Yes, I think especially for pumping is helpful in the beginning, because it does in that basil only time period, it does give you a general idea of how things are being kept with the rate that's at play. I do think that basil testing needs to be more explained, let's say when we are talking about pumping insulin, though, because there are as you know, a lot of variables that could be at play in that barrel basil testing time period, especially like from from a woman's standpoint, it could very much be that it's not the right time of the month to be Basal testing. Right. Right, right. So all of these various are a kid or a teen who is a kid or a teen who is really athletic. Right, and there is consistent effect of activity level. And it may be different on different days, but there could be overlap from a data goal that you had for our practice or a tournament. I so Basal testing. As a general idea, yeah, it can be a really good place to start, especially if you think things are really off in a certain place of the day. But is it the end all be all of knowing where your insulin should be? Not 100% of the time, right

Scott Benner 8:07
and so, so what I ended up telling people when I speak with them, is that you know, if you're having an issue and that issue could be anything like you're spiking at a meal, or you're you know, drifting high all the time, or you're incredibly high all the time, you know, any of those things. You have to first look at your Basal insulin. It's it's absolutely far and away the first thing I have to apologize to you Arden's texting me and I believe she's trying to tell me, it's lunch. Okay, so lunch question mark. So Arden has been sick the last couple of days and pro already kind of resistant like this to her insulin a little bit. But we are ahead of it now. So she's 106 and stable now. But to give you an idea, she woke up at 110. By the time she was getting dressed, she was 120. Then there was this diagonal up, I Bolus a unit and doubled her Basal for an hour. And 30 minutes later had to Bolus two more units to get her back to this 106. Now she never got over about 150. But she sees that rise every morning like that, that little bit of a rise. But this morning I used I'm going to save three units more than I would normally use. Yeah, it's just because she's not feeling quite well.

Jennifer Smith, CDE 9:20
Again, another reason that basil testing things like this is not it's not purposeful. In fact, I think, you know, a lot of people try to overcome that morning time rise with a Basal adjustment. But what happens then when you wake up at a different time of the day, right or you have a variable schedule, so a lot of times I actually tell people, you know what, let's look at what the rise is. Don't correct it. Let's let's watch the rise. Let's figure out how much of a rise Are you consistently having, you know what we can offset it with a with a dose of it of Bolus. Sometimes that actually hits the mark better than trying to incrementally adjust a basil behind the scene that could actually change day to day.

Scott Benner 10:06
Right right. Okay, so now this is um this is really interesting to the waiter like tell you what just happened. So this is kind of hilarious but my wife is here. I'm gonna have to walk away for a second yeah back. Arden's pump only has 10 units left at it and, and just added her lunchtime Bolus is going to be 12 units. So I just had to do a smaller Bolus as a Pre-Bolus still, and I'm going to send my wife over to like swap. Oh, no, let me go out of my way. The Dexcom G six CGM is now FDA permitted for zero finger sticks. That's right, the continuous glucose monitor that Arden has been using forever, does not require calibration from a blood glucose meter any longer. But do you know what it does do? It allows you to see your blood sugar, speed and direction. Are you rising at two points a minute falling at three points a minute, the Dexcom CGM will let you know with customizable alerts. And if you're the caregiver, or someone who loves someone with type one diabetes, and you'd like to be able to see their blood sugar when they're not with you, that's possible too. Because Dexcom has a share and follow feature that is available for Apple and Android. My daughter is at school right now. We just gave her insulin for her lunch, and I can see her blood sugar, her blood sugar started to creep up on us a little bit. So I got an alert. And we added some insulin stopping a rise. The Dexcom G six features an applicator that is virtually painless. My daughter says she can't feel it at all. And it's completely automatic. One button push and the sensor bed has been applied. You snap in the transmitter and you're on your way. You can see your blood sugar's on your Apple watch or other smartwatches on your iPhone on your Android phone. You can share it with anyone in the world anywhere. I can tell you without hesitation that the Dexcom continuous glucose monitor is without a doubt one of the main reasons why we've been able to keep my daughter's a one C between 5.2 and 6.2 for five continuous years. To find out more go to dexcom.com forward slash juice box or the links in your podcast player show notes or at juicebox podcast.com. It's going to be the best decision that you ever made. So all is okay. Yeah, my wife's it's across the street. Yeah, my wife's gonna run over. She's working from home today. And it really does just go to show. I guess the fluidity that you have to keep around diabetes because okay, I'm lucky my wife's here today. If she wasn't, I would have to tell you, Hey, I gotta go. But in the end, there's no panic here. Arden's blood sugar's 107. I wanted, I wanted to do a Temp Basal increase of 50% for an hour and a half. And an extended 12 unit Bolus for lunch. But she only has 10 units. So instead, I had her set the Temp Basal still and do an eight unit extended Bolus. So she's still going to have four units going when my wife gets there, they're going to swap that pump real quick. And then she's going to head off the launch and be okay. Right. We'll be fine to get early lunch. Yeah, on every other day. It's a 1030. And then on the 30, like,

Unknown Speaker 13:23
what does he get up at five o'clock? Do breakfast? Really that

Scott Benner 13:27
sheets 1030 Every other day and the opposite day sheets at 1130? And she's out of school by two? Oh, wow. Okay, it's all kind of very quick. I don't know if she's learning anything. But so so I Yeah. So anyway, what I wanted to say about Basal is that, I'm sure just like you, I meet people who are having trouble, right? They're either on the roller coaster and they're going to 400. And they're going to 60 and up and down, or, you know, somewhere in that problem. They're high constantly, they're always 180, you know, they can't really seem to do anything about it. And when they get to you, they have all of these theories about why their blood sugar is too high, right? And I tell them, your blood sugar's too high because you don't have enough insulin, and it's not timed correctly. Now we're gonna start with your basil. And they'll inevitably say, Well, what about my insulin to carb like, that doesn't matter. I'm like, you can have a perfect insulin to carb ratio. If your Basal insulin is not right. None of this matters, right?

Jennifer Smith, CDE 14:24
That's right. That's why we call Basal insulin, the foundation of your management, it really is we, we actually tell people, it's like the foundation of a house. If you have a sound structure that you're building on top of everything you put on top of it will work. Even if the insulin, the carbon, the correction factor, and things are a little bit off. If the basil is off, those are going to also look like they're not working well.

Scott Benner 14:51
And it becomes impossible to diagnose what's happening, right. And so what I ended up saying is that you Try to imagine we use round numbers for examples. But try to imagine your basil is a unit an hour. That's what that's what it should be. But you have it at point five. And then you have you look at some food and you say, Oh, well, that food is two units. So you and let's say you're right about that. Let's say you're 100%, right that the food takes two units, you put your two units in, all you've done is now replaced the basil that you needed, right? You're so you're resistant, you're high, now you're replacing your Basal it's possible those two units will only go towards impacting the problems your Basal insulin has. And then your blood sugar shoots up and you go, I don't understand, I put in the right amount of insulin, I counted my carbs, right, I counted my carbs. I looked at the label, and I did everything the doctor told me why didn't this work. And in the end, and you know, through this series that you and I are going to do together, I'm going to repeat a couple of things over and over that I've found to be incredibly helpful. But in the end, if your blood sugar is high or low, you've mis timed miscalculated, or a combination of those ideas. And that's pretty much it, you know that I find that to be the core of it, it's not the first step to me, not being afraid of insulin is the first step. But we're going to talk about that in a different episode. But I think that it's it's timing and amount. And I think there's a million other things that can impact your life with diabetes. But that's the seed of the tree, right? And you could throw away all the leaves and all the branches and everything that comes off of that seed, if you'd have that seed timing and amount, you're well ahead of the game. Right?

Jennifer Smith, CDE 16:34
Right. Absolutely. And I would say the that those two pieces actually go very well together, as far as not fearing insulin, you know, and not being afraid of using it because I certainly work with many people who that is a major problem it is I just want to eat 200 Because I'm afraid to give the amount my pump is telling me to give or the amount that the doctor told me to give, you know, and I think understanding Insulin is the base of that understanding it and understanding the timing, and the action of the insulin and how it also individually works for you, helps to dissipate that fear,

Scott Benner 17:18
right? I think that I think that if you can keep your blood sugar stable at 200, then you can keep it stable at 180. And if you can do it any you can do it at 140. And believe it or not, if you can do it at 120, then you can do it at 75. And you know and so because the the tools that you use to to achieve that stability aren't different depending on what level your blood sugar's at. It's all the same. It's all the same stuff. Okay, so that's that is that's excellent. So we'll talk about fear in an upcoming episode as well. I'm newly diagnosed, I go into my doctor's office, now you are uniquely qualified to tell me this. What do people get told a diagnosis? And why do they only get told what is shared with them?

Jennifer Smith, CDE 18:04
I think it there's a wide range of what people are told, I certainly think that the younger the diagnosis, especially for type one, the younger the diagnosis, the more education there is, the more information is provided. adults that are diagnosed I think, unfortunately, get the least amount of education again, and it differs system to system and provider to provider. But in the beginning, you know, they're taught how to use a glucometer. They're taught how to give an injection, they're taught that you're going to be taught essentially the basics of that insulin action. And you're going to be taught carb counting. I mean, that is pretty much the gist of what you're going to be taught.

Scott Benner 18:51
Anyone who's been listening to this podcast for any amount of time will know that I call that do not die advice. That's the that's the advice you get so that you don't die. It doesn't keep you healthy. It doesn't help you understand anything. It just keeps you from going home and falling over.

Jennifer Smith, CDE 19:05
Well, and I think another piece of that, too, is very, very soon in that beginning is how to avoid hypoglycemia. How to avoid a low blood sugar because insulin causes low blood sugar. And unfortunately, that's where the fear starts.

Scott Benner 19:24
Exactly. And so that's where it starts where the fear starts, but try to understand that from the clinicians point of view, you are frazzled. I say this all the time being diagnosed with a disease that you cannot cure. It feels like someone just walked up to you with a shovel and smacked you square in the face with it and then started yelling, Basal insulin Bolus glucometer. This is a test strip and you're like, wait, wait, what? And so the doctor sees that on your face and can't in I guess in their minds, they don't want to overload you. But the unintended problem is just what you said that you start with Fear, then everything starts with fear. It would be a simple sentence, it would be, it would be Listen, we're going to teach this to you slowly. I know that seems counterproductive, but it's not. But there's no reason to be afraid. And that's what we're going to learn. Now, the question is, do doctors not teach that? Because they don't have the time? Or they don't have the knowledge? Like what like, because there are everyone's gonna walk into a different endos office, you're gonna get an 80 year old guy who's been doing this, since people have been boiling their urine, right? And he's just gonna think that if you count your carbs, and inject and go to 300, and come back to 100, that's amazing. And that's that, right? Right. And then you're gonna get a guy who's in his 50s, who's just starting to hear about like, this CGM stuff, and you're gonna get different advice from them, you're gonna get different advice from, you know, a woman who's been out of medical school for three years and has diabetes. How do you as the patient know what advice you're getting? When you don't know anything about diabetes?

Jennifer Smith, CDE 21:03
That's a very good question. Absolutely. And I think, you know, with today's technology, honestly, I, personally, as people have come to, to work with me, or to work with us that integrated, you know, it's people come because very soon, they realize they're not getting what they need. That's not quite, they're not sure what they're missing. But they know from researching and looking and Googling it, that the information that they've gotten is so just literally the tip of the iceberg, that they're missing so much more beyond and that, you know, that their doctor is saying, Well, you have to be in good control for a year to be able to start on a pump. And most parents or even adults are saying, that's not the case. Right? Doesn't it? That's that's not doesn't make sense. I want to know what I should be doing. I want to know, what is the best for my child or for myself? I want to know, and I think those are some of the things that as a as a newly diagnosed, asking more questions of your provider, even though you may not know exactly what you're asking, when you've Googled it, and you've researched and done some of your own searching, and even asked, you know, some people I think more and more people are, they're kind of they have acquaintances or whatnot, who might have diabetes. And so they, they will ask them, they'll say, Well, they're doing this, you know, maybe I should ask about this. And I tell all the people that I work with, you know, what, if your provider is not able to meet you or can't answer, even those basic questions in the beginning, it's, it's time unfortunately, to find a new provider. It really is.

Scott Benner 22:46
And based off of that idea, I want to say I want to say the same thing to two different segments. So if you're a clinician, and you're listening to this, or if you're a person who has diabetes, or is trying to care for someone who does, there's a space that a lot of people get into, they're not given enough information up front. And they're, they're paying attention, right, they want to do well, they're paying attention, and they see inconsistencies with what's been taught to them in the doctor's office. But because you're the doctor, or because you're looking at a doctrine, you were raised to listen to a police officer, your teachers and a doctor, you're raised to believe that a person in a white coat is infinitely more intelligent than you are, there's no reason to question them. And so when they give you these concrete laws of diabetes, you go home, put these laws into practice, and they don't give you decent results. This is for the doctors, it puts people into such a psychological bad place. It just wrenches their gut, they feel like they're killing themselves or their children. And they don't understand why. And even when common sense things about their diabetes show up. They can't bring themselves to make the leap, because you've told them, we're not told them anything about that idea. And I will give you a great example. And it's a very simple example.

Jennifer Smith, CDE 24:03
Or kind of before your example. You know, it's kind of a cut and dry too. As you know, kind of going with what the doctor said, the doctor said to do this, the doctor said I should take my my insulin and eat right away. Well, if that's not working, and you don't, if you don't know that and clinically, clinicians, I think, really do need more information about what really is the real life of diabetes. What's the real life use of insulin and mastering it's action and all of that because clinical book does not mean it meets what happens at home. And when your clients come to you and your patients with or people with diabetes come to you and they say this isn't working and following all of your rules. It's not working. Instead of saying well, you must be doing something wrong because that that happens often whether as a clinician you want that expression to come out or not. It does you Make them feel like they're not doing something right. And you don't give him a weight to, to help you don't explore with them and say, Okay, I hear what you're saying, I hear that you've tried everything I've thought would, excuse me would work. And it's not let's, let's see why it's not working, maybe something is variable for you.

Scott Benner 25:23
And let's have more of a conversation and explain what's happening. So that so the doctor can glean more from what's going on. I'm at the point now, and I'm sure you're there, too. I can look at a 24 hour graph and make changes in five minutes that improve somebody's life. immeasurably in 24 hours. I don't know why a doctor can't do that. So I mean, I figured

Jennifer Smith, CDE 25:44
some can yes, some are. Some are awesome. But some are not know me

Scott Benner 25:48
well enough. Now to know that, you know, I'm not the wisest person in the world. And I can look at it and go, Okay, this is this like this. My example of, of how powerful the doctor's suggestion or non suggestion can be to people is that I was speaking with a woman in her 40s, who had had diabetes for 25 years. I looked at her graph, she was distraught. And I said, you just need more insulin? And she said, Well, no, no, because in the ocean, like I said, all these reasons why that wasn't the case. And I said, No, that doesn't make sense. And in a brief 32nd, Explanation, over a telephone call, I could literally hear the light bulb turn on in her head, and she went, Oh, my God, I just need more insulin. And I was like, right? That's it? I mean, can we go now or, you know, but but think about, think about that. A well intended, intelligent, educated person who goes to her doctor's visits, and in 20 years, can't figure out why their blood sugars are the way they are, and no one's ever helped her. So what I'm saying to people who are newly diagnosed, or people who have gotten to that point and want to start over, you have to sort of think different, you have to, you know, if you're, if you're in a situation where you're newly diagnosed, and you've gotten some real, like what I call like old timey information, you need to think differently. And if you've had diabetes for a long time, or been caring for someone forever, and it's not going the way you want, that's the first thing you have to do. You have to say to yourself, I must not be thinking like flip it upside down, look at it all the time, I have a friend who every decision they make is wrong. And I once said to them, How come when you have a reaction to something, you just don't wonder, what's the completely opposite of that, and then just do that. I was like, I was like, right, you're right, you're always wrong, you know, so like, and that's what happens every day, you get up and you do this thing with this insulin, and this pump and all this stuff. And it always goes wrong. But yet, there you are the next day,

Jennifer Smith, CDE 27:46
doing it over and over and over again, which is another reason that I you know, working especially with the women through pregnancy that I work with, that's a piece of the variability that I try to encourage them to sort of work on prior to pregnancy. You know, because if you can figure out it's why many people with diabetes, eat some of the same things over and over and over again, they have a standard breakfast, I know that it works. I know that I need this much insulin, I knew they need to use a temporary basil for this much or for you know, whatever extended Bolus, and it works for me, it's, that's the reason is once you figure it out, you're like, great, I like little magic because magic piece right here and I'm not gonna screw it up. Now.

Scott Benner 28:32
I'm gonna have this half a piece of wheat toast two eggs over easy and two tablespoons of avocado for the rest of my life. Right? Exactly. Every morning, if that's happening to you, if you're listening, and that's happening to you, I say this proudly, the there are some low carb people who will get upset and I want to tell them right now you can eat low carb your whole life. I don't care. I'm just saying that if you ended up there because you couldn't figure out insulin. You know, if you're if you're eating something you don't want to be eating there might be a way to manage this. But I tell people very proudly that at this point, my daughter is 14 years old when I'm recording this. She has had type one diabetes since she was two. And for the last five years her agency has been between five two and six two with absolutely no diet restrictions whatsoever. Anything you can think of Arden eats and eats frequently.

Jennifer Smith, CDE 29:25
And I bet her more important within that I think we talked about this in the E one Z discussion and podcasts but more important than even the a one C is her standard deviation the variability which I would estimate without even seeing her information, I would estimate that her standard deviation is very nice meaning she's got these juicy little gentle rolls through the course of the day rather than this major roller coaster because you could have anyone see a 5.4 Yes, but you can have a major you know, standard deviation

Scott Benner 29:56
and we will talk about that in coming episodes. You can't run around with your six a one C but be it 300 Half the day and 50 the other half of the day that you've just tricked the a one C test

Jennifer Smith, CDE 30:06
right? On the doctor. Yeah. Because, again that goes back to clinician. A onesie is certainly it's a starting place. It is not the end all be all there is more in depth that needs to be looked at with that a onesie. Yeah,

Scott Benner 30:19
we try very hard. Well, you know, as you go on and listen to these episodes, you'll realize I'm not trying that hard anymore. I figured it out to the point where it doesn't really take that much involvement from us. But Arden's low alarm on her Dexcom is set at 70. On my follow up, it's 120 for the high alarm on hers, it's 130. And so we'll talk about like bumping and nudging later on, but that's my concept is that smaller amounts of insulin as you try to leave a tight range, get you back into that range more quickly. And cause far fewer lows later. Yeah. Give me one second here, we'll take a pause. Okay. I'm gonna text Arden, she's now wearing a new pump. I need to know how much insulin delivered from the last Bolus. And then because it's a new pump, and she's literally gonna walk right into lunch. Excuse me, going to double her basil for I was only gonna do 50%. Now I'm just gonna double it for an hour and a half. And that way, if there's any slow start with that site absorbing and having action I'm just going to do, I'm going to do something that at some point during these you'll hear me talk about where I call it over Bolus Singh, like I just I imagined not just what her needs are now. But the momentum and higher number that I know is coming. In 2008, we made the decision to get my then four year old daughter and insulin pump, it's a decision that I wish we would have made years sooner. After seeing everything that was available, we easily settled on the on the pod that was back again in 2000 and ate. Today Arden is about to turn 15 years old, and she has been wearing it on the pod every day since then, every day. And as I mentioned in the other ad Ardens eight one C has been between 5.2 and 6.2 for five solid years. How do we do that? Well, we start by seeing an insulin pump is more than just a way to not have to take shots. The Omnipod gives you the ability to do temporary Basal rates, that's increases or decreases in your background insulin, extended boluses, which will help you spread out your insulin over the life of a meal. And so much more. The Omni pod has no tubing at all. The pod is self contained, you wear it on your body, and you control it with a wireless controller. So there's no tubes running through your clothing, and no pump that you have to jam in your bra or down your pants or wherever people have to put their pumps that just doesn't exist with the Omni pod but does exist is the ability to swim while you're getting your insulin bathe while you're getting your insulin and live life untethered. Beyond the party even features self insertion, just push a button. Now I want you to go to my Omni pod.com forward slash juice box. And when you get there, you'll get a free, no obligation demonstration pod sent directly to your house. Check it out and see what you think for yourself. I'm going to do something that at some point during these you'll hear me talk about what I call an over ball of saying like I imagined not just what her needs are now. But the momentum and higher number that I know is coming. Yep. So that's hard change

Jennifer Smith, CDE 33:49
was one thing that I was always in in. In the beginning, I was very thankful that I had noticed the difference with my animus pump change that I needed that site to just be like, just saturated with insulin to get absorption sooner. So and I was glad because when I started Omni pod in 2006, I started doing the same thing that I did with my other pump sites, you know, just Temp Basal ng up by almost 100%. For about it was usually about an hour to two hours depending on kind of where I was at that point. And if it was I was having to change that pod, especially if it was before a meal and I was going to need insulin for that meal with the new pod. I actually instead of doing it through the pod I gave an injection because I just found that a Bolus with that new pod site. It never went well. Whereas if I did a Temp Basal increase, I took a Bolus via injection for that food that I was going to eat and let the pot gets settled in. I didn't have any blood sugar issues.

Scott Benner 35:03
Okay. Yeah,

Jennifer Smith, CDE 35:04
yeah, it's everybody's strategy is different,

Scott Benner 35:06
right? But I'll tell you what it what it what that tells me is, again, this is going to be another sentence you hear over and over again, you have to trust that what you know is going to happen is going to happen. Yeah. So if you make a pod change and your blood sugar's 90, you still need to do that. Right? Right. It's okay, hold on. Yeah, good. 5.6 units. So I'm gonna do a Temp Basal increase 95% for an hour, and Bolus. seven units. All now go eat as soon as possible. So she's got 5.6 units in from 20 minutes ago or so she's still 102. And so I'm not scared of those seven units. She's going to be eating in five minutes. And look, the 5.6 units didn't do anything over the last 20 minutes. So I'm good. My goal here on this Bolus is 75. Diagonal down while she's about halfway through her meal. Anyway, that's again, stuff we'll talk about later. Yeah. Okay. So

Jennifer Smith, CDE 36:10
and comfort level with, you know, will happen?

Scott Benner 36:14
Yeah. Because, and by the way, and this, this, you have to, you have to have these experiences, like, I'm going to leave this in this episode, so that, you know, that things have to happen that you don't expect, because it's data, right? It's, it's, I did this and this happen next time, I'd like this to happen. So I'm gonna do sooner or later, more or less, whatever it is, I'm going to do, but you can't know that unless something goes wrong. Right, right. And so and so here's a great tip for somebody starting over or who is newly diagnosed. There are no mistakes. There are only experiences that build on for next time. That's it. Yep. see something happen. Instead, you can't get dramatic. You can't get upset. You can't cry. You can't go, Oh, my God, I'm killing her. You can't do it. Right. You say to yourself, Okay, bare bones, what just happened here, I put insulin in here. It went up to there. And then it came down and crashed. I bet you if I would have put that much insulin in sooner and spread it out a little bit like I could have created the resistance that that blood sugar needed. Right, right. But if you're busy running around, wringing your hands, and just you gave away an amazing opportunity, and, and I will use this as an example. This past weekend, I was helping a mother with a five year old four or five year old boy. And while I was talking to her, this kid's blood sugar went to 300 off of some Cheerios. And we talked for 20 years, that breakfast cereal. Oh my gosh, we're talking for 20 minutes or so. This poor kids blood sugar's at 300. It's not moving. And we're getting ready to get off the phone. She's like, he's hungry. I don't know what to do. And I was like, Are you? Would you like to do something that's going to sound insane? I'll help you. And she goes, I think I'm desperate enough to try something insane. I was like, great. How much insulin Do you think it'll take to bring a 300 to 90 and she says a unit? And I said How much do you think lunch is going to take and she said a unit and a half as a cool Bolus two and a half units right now. And she says she's like, what's going to happen? We're going to put his blood sugar into a freefall. And then we're going to add the lunch at exactly the right time. And then with a little bit of fast acting carbs if we need to, we'll bring it in for a landing. I said I'll never leave you will will text the whole time we'll talk again and we have to. So she does it. We get diagnosed down to 90 to 75 to 52 hours down to 50. She's texting. Oh my god. I'm like no, no perfect, like, a whole lot. I actually texted her a picture of the guys from Star Wars who are trying to blow up the Death Star. Right? Stay on target. Like just don't don't flinch. Like don't flinch to 52 down to 42 3200. I said, Okay, now's the time to start getting the lunch together. And she laughs She goes Oh, it's already it's just here on a plate. That was good. I said when we get the one at given the food. So 182 down kid gets the food 10 minutes later. Now isn't this interesting? We're dropping 10 points every five minutes on the CGM. Then he eats then all of a sudden the dropping stops the arrows are still there but now it takes longer to get the 170 took even longer to get the 160 and she gets the watch this happen 150 Still two down 140 Still two down. I said okay. It's not going to catch the arrows. Do me a favor, give him a few ounces of juice. She says we don't have juice in the house. And I thought to myself, Oh I just killed a kid over the phone. And goodbye, wrong number. She says we treat Lowe's with jelly beans because they hit him so hard. I said, that's great. But do you have any liquid in the house that has carbs in it? That's not soda. And she's like, Oh, we have lemonade. I said, that's great. I want you to give him four ounces. Eliminate. So she gives them I said, Don't go crazy measuring it. Just give him a little bit of lemonade, right? So she gives him the lemonade boom, goes to one arrow goes to diagonal down, the kid comes in, I swear to you 75 Nice and stable. It's foods been in for a half an hour. And when it was over, she's like, wow, that was nerve wracking. I said, Okay, I know that, clear your head, and then go back and look at the boluses. Look at the time you put the food in and look at the CGM and figure out how that insulin works in him. Because you just had a Master's class how insulin impacts blood sugar and how food impacts insulin.

Jennifer Smith, CDE 40:53
Absolutely, absolutely. And that's, that's the place that as you know, clinicians, they don't have the time to do that. And it's unfortunate is it's unfortunate in the stance that with somebody something like diabetes, type one diabetes, specifically, you need that hand holding, in an instance like that, you need the ability to be with somebody who can say, you're okay, write it out, you're okay, he's going to be fine. You've got jelly beans, you've got juice, you've got honey, you've got something in the house, you've got a mini glucagon that you could use if you need to, you're going to he's going to be okay, she's going to be you're going to be okay. It's, it'll be fine. But you do you have to use those learning pieces, I think it kind of goes along with a really good friend of mine. Who has had diabetes a bit longer than me, which is 30 plus years, hurt. Or her doctor actually gave her kind of a good little hint. For numbers, you know, we start to view numbers in diabetes as good and bad, right? And that comes with that feeling of frustration then, and oh my gosh, I'm like killing myself, I'm doing something bad or whatever. And he said, you know, the numbers are information to just like you said, it is okay, I'm here. Why am I here? You know, what can I learn from this? What can I do better next time. And maybe you analyze it, you know, three hours from now, maybe not in the instant. But it's information. And so he told her, you know, when the number is going to come up on the glucometer. You put this test strip in you put your blood on the strip, and you tell yourself, I am awesome. And here comes a number,

Scott Benner 42:38
right? Yeah, because I just didn't begin to tell me what to do next. And it can't be a judgment, you can't feel judged by it. You can't let you can't, you know, you can't look at it and say bad luck, you can say not what I wanted, not what I was shooting for. Right? What makes me what gets me to what I'm shooting for. And you know, it's funny as as you and I are pretty much wrapping up this first thought, right? I have so many people asked me when they're first diagnosed, what are the things I need to know? And I find around diabetes in general, everyone's looking for an amount or a number from you just once tell me how many minutes I should Pre-Bolus Please tell me how many units I should do if his budget is like this. And I tell them all the time, I don't know figure it out for yourself. And you will write like you have to but I can't give you no one can tell you that a 10 minute Pre-Bolus is going to be what's right for you. In any given situation, let alone all the time. I think it's insane that we think that just because we've set a Basal rate of you know, one and a half units at 2am that we think that that's what our body is going to need every day at 2am It's It's insanity to think that it's just the best we have with the technology we have at the moment. Exactly. And so if you listen to this thinking someone's going to tell me the rules about what I need to do when I'm starting with diabetes. We did we told you what to do it just isn't what you expected. Right? Right. And so I get that I understand that it's it's not a pill disease it's not take three of these a day and you have to have food with them like it's not that easy.

Jennifer Smith, CDE 44:12
And I think as a general to in the beginning of of learning that comfort level and learning you're learning what works for you by watching you also have to take into that the variables that can mean what you did figure out needs to change because of such an such variable right? So you know my breakfast in the morning if I don't get to go to the gym before or after my normal breakfast which I just I like it which is why I eat almost the same thing every single day and it works nicely blood sugar wise but I like it so and it's easy. So but I the variables that I had to figure out were pre eating it. Exercise, post eating it Exercise there, those are the variables, you know. And so what works in a morning, where I'm not exercising at all, is completely different than the mornings when I have exercise at such or such time,

Scott Benner 45:14
there's variables are forever changing, which is why you have to, interestingly, know what they are, and at the same time completely ignored them. And what I mean by that is that you're not a machine, right? So there's certain things that are going to make sense. Like you just said, I know if I exercise prior or post that this changes how this Bolus needs to be. But if you're walking around trying to decide constantly, am I anxious? Did I just banged my knee? Like, like, you know, like, am I going to get a client the thing I see people saying online all the time, like his blood sugar's gonna, he's gonna get sick three days from now I'm like, Oh, my God, just give him more insulin. Like, who cares if he gets sick three days from now, I so that's what I think of. When I say be fluid, I just that it's going to keep changing at such a rate that for you to try to apply static rules to it is insane.

Jennifer Smith, CDE 46:08
You've got that piece of, of life with diabetes that you can then bring into education, which is why people usually come to us because we understand it from the living it standpoint, not from the this is what the clinical book says should be happening. So do this.

Scott Benner 46:27
I'm incredibly proud to say that I've gotten to the point where if I can talk to somebody for about 45 minutes or an hour, they can have a major change in just a couple of days. That's that's communication. That's what that is. Right? Well, that's what I have in mind, Jenny for this series. Today we talked about being newly diagnosed or starting over. The next episode will be about multiple daily injections or MDI. We'll do an episode about insulin bolusing pumping CGM EMS, and on and on until you and I finished covering every aspect of the things that we talked about on the show. Please remember that the Juicebox Podcast wouldn't be possible without its sponsors for today's episode on the pod, and Dexcom Dexcom, the makers of the G six continuous glucose monitor, and of course on the pod is the tubeless insulin pump that Arden has been wearing for over a decade. You can go to my on the pod.com forward slash juice box get a free no obligation demo of the pump sent right to your house. We can go to dexcom.com Ford slash juice box to find out more about art and CGM hack you could do both.

Jennifer Smith has lived with type one diabetes since she was a child. And so she has first hand knowledge of day to day events that affect diabetes management. Jenny holds a bachelor's degree in Human Nutrition and biology from the University of Wisconsin. She's a registered and licensed dietitian, certified diabetes educator and a certified trainer of most makes and models of insulin pumps and glucose monitors. She's an active member of the American diabetes Association, the American Association of diabetes Educators, Jenny also co authored the book pregnancy with type one diabetes your month to month guide to blood sugar management. It's available on Amazon and there's a link in the show notes. All that aside, Jenny's just a nice person. And I like having her on the show. And I love the way she thinks about type one diabetes. I am incredibly lucky that she's doing this series with me. I initially shared my idea with Jenny about putting together a series of shorter podcast episodes that would help people transition from their starting point with type one diabetes, because there's just no good reason to struggle. All you need are the right tools and a knowledge of how to use them. And that's what we're hoping to bring you. So when you see the next episode, it's about multiple daily injections. Don't skip it because you're pumping. Listen, there's good information in each one. By the time you get to the end of my talks with Jenny, it's going to feel like you sat in a room with her and I and hashed out every possible angle that you're going to need to understand. Because of the nature of these podcasts, I want to mention again that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, to Always consult a physician before becoming bold with insulin or making any changes to your health care plan. If you found this podcast to be valuable, please go to iTunes and leave a rating and a review. And don't forget to tell a friend the podcast grows when you share it

I hope you enjoyed this episode of the Best of the Juicebox Podcast if you're interested in the rest of the diabetes Pro Tip series. Again, you can find it at juicebox podcast.com diabetes pro tip.com or by going in your podcast app and searching juicebox all one word and pro tip that's two words juicebox pro tip, they should all pop right up in front of you. There are 25 episodes in the Pro Tip series. This is episode 210 Of course, but episode 211 is all about MDI episode 212 all about insulin episode 217 pre Pre-Bolus Episode 218 Temp Basal to 19 Insulin pumping to 24 mastering a CGM to 25 Bump and nudge to 26. The perfect Bolus to 31 variables to 37 Setting your Basal insulin. Episode 256 is about exercise, Episode 263 fat and protein episode 287 illness injury and surgery 301 glucagon and low Beegees 307 Emergency Room protocols 311 long term health episode 350 Bump and nudge Part Two episode 364 pregnancy 371 explaining type one that's an episode that you can give to people and it will explain type one diabetes to them. Episode 391 glycemic index and load Don't skip that one 449 postpartum 470 weight loss 608 Honeymoon 612 female hormones and God knows they'll probably be more one day. Check them out. If you're enjoying the podcast please share it with someone who you think might also enjoy it. And don't forget to check out the private Facebook group Juicebox Podcast type one diabetes. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast

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#861 Best of Juicebox: Diabetes Concierge with Katie DiSimone

Episode 227 Diabetes Concierge was first published on April 30, 2019. Katie DiSimone is on the podcast to explain what the heck looping is and how it can change your life with type 1 diabetes.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to episode 861 of the Juicebox Podcast.

Today, on Best of the Juicebox Podcast, we'll be revisiting episode 227 was called diabetes concierge and aired originally on April 30 2019. Back in 2019, I had been approached by a listener of the podcast, who asked me if I had ever considered looping for my daughter. And I wanted to learn more about it. And Katy De Simone was kind enough to come on the show and explain it to me. I didn't keep up with Katie after that, although I was very aware of all the hard work that she put into the looping community. And then I remember one day, I think in 2020, probably spring of 2020. I noticed on Katie's social media that she had like gone on this health kick and was working out and doing so like wonderfully in it. It made me track her progress. So I was keeping up with Katie on Instagram. And then one day the pictures went from workouts, to a brain scan. And that's when I learned that Katie had a tumor. She shared her experience right there on Instagram. And I'm looking now at her account. And that post was put up just at six weeks ago. I heard the bad news yesterday that Katie had passed away. And while I didn't know Katie personally and just had this one interaction with her, she was always just a very impressive person from afar. The work that she put in for loop for everybody, including her daughter, who has type one diabetes is immeasurable. Her impact on my life, my daughter's life and have many of you. It can't be properly accounted for. And so I wanted to run this episode today in honor of Katie, her family, and her her good work. Hello, and welcome to episode 227 of the Juicebox Podcast. Today's episode is sponsored by the Dexcom G six continuous glucose monitor, by real good foods, and of course dancing for diabetes, you can go to dexcom.com forward slash juicebox. Dancing the number four diabetes.com or real good foods.com To find out more about the sponsors. Now when you go to real good foods that calm and you place an order, you use the offer code juice box to save 20% on your entire purchase.

As you well know nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And you should always consult a physician before becoming bold with insulin or making any changes to your health care plan. Today's guest is Katie De Simone. And you're going to want to hold on to something because I think what I'm about to say next is going to take you by surprise. But one of our listeners Gina brow beat me browbeat me online into trying the loop now that it's available for the Omni pod. And so I got Katy on the show because she is about the loop easiest person. That doesn't sound right. She's really entrenched in the world of looping. She's not loopy. She's actually delightful. Anyway, Katie came on. She explained to me everything about looping and I had a bit of an epiphany that I thought it might actually help me help you. So I said, All right, let me try it. So sit back and relax and listen to the conversation that I had with Katie that made me think. Alright, I'll give this a shot.

Katie DiSimone 4:15
My name is Katie De Simone. And I work for tight pool now. And I'm also part of the DIY loop group. So I have a little bit of dual hats in that respect. And so sometimes I try and clarify which hat I have on.

Scott Benner 4:31
Which one are we wearing today? Both one?

Katie DiSimone 4:34
I'm imagining probably mostly the DIY Katie hat. Because loop has had a very exciting announcement this week that it now integrates with the Omni pod.

Scott Benner 4:45
Okay, so if you have to change hats, just make an announcement before it happens.

Katie DiSimone 4:49
Yep, we'll do.

Scott Benner 4:51
Katie, I'm gonna give you a tiny bit of background on me and what I think is probably the feeling of more people than should be and And then we'll move from there. So my daughter is going to be 15. This summer, she has been using it on the pod since she was four. And because I think greatly, because of the things we talked about here on this podcast, her agency has been between five, two and six, two for over five years. She doesn't have any diet restrictions whatsoever. And we just kind of, you know, figured it out a little bit. But I also want to stay, I want to ride the wave, you know, on the crest of the wave, I don't want it to crash down and then just be, you know, going back out to see you. And I'm like, What's the loop? So I'm excited. I've said before that the documentation scares the heck out of me. But I got cajoled harshly by somebody online. And they were like, try, just try it. Just try it. And then she finally said to me, look by the Reilly link, and if you don't like it, I'll buy it from you. So Gina, this episode is for you. And for everyone else. I think we need to just first kind of it as simply as possible, let what loop means make sense to people? Can you do that?

Katie DiSimone 6:09
Yes. Basically, loop does what most of the general population I call a muggles, the people who aren't living with tea, Wendy, what most of the Mughal population thinks happens for tea Wendy. That's what loop does is that they see if you explain to a muggle that you have a continuous glucose monitor that provides you information about your blood sugar every five minutes, and you tell them that you dose insulin off your insulin pump based on your blood sugars, they assume that those two systems talk to each other. And that's, as we all know, pretty much not the case on any commercial product. These days, with the exception of very recent developments, relatively speaking of the 670 and Basal IQ, which does half of that equation, it responds to low blood sugars. So what looping does is that it takes that and closes the loop. In other words, your insulin dosing will actually be based on CGM data without having your brain involved in that or your fingers involved in making pump button pushes. So in the simplest form, that's what it's doing is that affecting any given time, you would have looked at your CGM data and known that you had eaten and thought, maybe I should give a little bit more, or I should suspend. Or I should decrease my insulin. That's what loop is doing for you. Now we're loop itself with a capital L. As opposed to a little case L of sort of the general concept of looping. What loop app itself does is that it puts all of that into a really simple, wonderful interface of an iPhone app. In all the traditional ways you love Apple products for their ease of use that you can just look at it. And it makes sense for what you're looking at. That's what loop is. It's an iPhone app that sits on your app where you can easily enter all of the information about the food you're eating the Bolus is you want to give where you're headed, what your settings are, it's basically all moved off of a device that you have to fetch out from underneath your sweater under your dress. It's all now on your iPhone, where you interact with most of your day anyway. And for my kid, the iPhone is almost an extension of her hand, because she's 16. She is on Spotify and Instagram and all of those other kinds of things. And so bolusing from her phone is a really natural place to put her diabetes management. For adult users, most of them are really psyched on the watch for bolusing and entering carbs. It's super discreet. You can do it at a professional meeting, and nobody's going to ask you, are you being rude or somehow ignoring things you can take care of it all on the watch.

Scott Benner 9:11
So most of you know that I'm speaking at the dancing for diabetes touched by type one event on May 18. in Orlando, Florida. If you're in the area and you'd like to come, I don't think it's too late. Check out dancing for diabetes.com. But if you can't make it, dancing for diabetes is like I don't know auctioned me off or something. All you have to do is go to dancing for diabetes.com Hit the Donate tab, make a suggested donation of $10. And when you do that, your name will be like in a hat. I'm gonna pull from that hat while I'm down there on the 18th. And I'm gonna pull up three names two of those names. I'm gonna have a 45 minute phone call with you. And one lucky name, one hour phone call and a 30 minute follow up and if you don't want to use the phone, we could FaceTime we could Skype, I could be out the window smoke signals. I don't care. Now listen, if you don't want to talk to me on the phone, I appreciate that but don't embarrass me okay, you hear what I'm saying? You guys gotta get on there and do this so I don't look like a schmuck. The expected numbers out of this the whole like Scott phone call thing Imagine if three of you do this I'm gonna look like an idiot. Alright, so don't do it for me don't do it for the cute kids dancing for diabetes. Oh, you know, do it for me do it for me so that I don't look identity. To have your name including this opportunity go to dancing for diabetes.com click on the Donate today button between now and May 17 2019. Make a suggested donation of $10. And be sure to mention juicebox in the notes. If you don't have internet access, or flat out just don't want to make a donation but you still want to submit your name. You can do it by mail. I mean, God bless you if you're gonna do that that's like a stamped envelope and I don't know what you're even writing there juice box and the thing and it's got to get there by this. I mean do it if you want. I'm just saying a lot of work. I hope to see on the 18th but if I don't, I hope we can talk

in its very basic form, all the things that we all sit around thinking are always simplified for us right like I think much like most people like artificial pancreas will come one day and what that means is my glucose monitor will talk to my insulin pump it will make decisions for me and I won't have to think about it. And that really is this it's this in real life. It's It's your right now it's Dexcom right you loop works with Dexcom CGM

Katie DiSimone 11:28
correct loop works with all the Dexcom CGM, so long as the g4 has share capability. It also works if you're on one of the older Medtronic pumps, it works with the older Medtronic CGM systems.

Scott Benner 11:42
Gotcha. And this is quite literally something that was done. I don't know what the word is. Is it a consortium of people like how do you think of it when you Is it a a cabal? Are you guys which is like what is? What is it exactly? Like? How did this how did this begin?

Katie DiSimone 11:58
The story started long before I ever got here. And it's a web of people in the most simplistic of forms, and it'd be too hard to name everybody who's been involved. But basically people across the nation were frustrated with where the state of diabetes gear was that it wasn't collecting information for the patient that it was residing in silos separate from each other and not being integrated. And so people started taking actions smart people who had the capabilities of and I use the term hacking, because that's what comes to mind for most people. But not hacking in the nefarious way. Hacking, as in I know my information is in here, I just want to see it, I want to use it to better. Basically all these people across the country, we're all working on separate parts, that all ended up through the wonders of internet, finding each other and they all moved closer together. So people who are working on understanding that Dexcom and making that more available before share was around, met with the people who were decoding the pumps and people who were doing algorithms, and they all started to form together till eventually, these closed loop components were all close together, okay, where my involvement came in, was my daughter was on Omni pad for about a year and a half after diagnosis, and was doing great with it. And then she started high school. And when she started high school, she told me Mom, I want to wear tube pump. I said, Well, why do you want to wear to prom? This is the opposite of where most kids go. She said, I want my diabetes to be more visible. Okay. It's an odd thing to request at high school time, but I'll go with it. And I said, Well, I've been stalking the internet. And I saw that these really smart people over here who are working on this open APS system will get on an older pump and I'm gonna have to get an older tube pump. So if I could find that maybe I could get two birds with one stone and automate some insulin delivery and that might help make our lives easier. So that's what that's how I ended up here was that my daughter wanted it to pump I knew I was gonna have to buy a used one mine as well. But the problem at the time was that the US pump system this open UPS system at the time was really bulky, and would require a lot more than a teenager was willing to give it time and attention to at the time. It's gotten better. So I was looking for small open APS systems and I was searching the internet frantically going, somebody must have worked to miniaturize this. And that's when they came across loop, which is a different system than opening EPS, but conceptually still the same automated insulin delivery based off your CGM ratings. So when I saw that it fits on a phone and it's a really small sleek form factor, it's that, yeah, I could do that. And when I got there and found where the project was, didn't have a whole lot of information about how to build it. So I spent a lot of time with Google, and putting myself out into uncomfortable spaces of trying to figure out how to build an app onto a phone when I've previously never done that. And with some help of some very nice people on the internet, who answered my questions, and Google, I got a built. And I was so excited. And it worked so well for us that my involvement that I committed to as a kind of pay it forward movement, is that I would write the documentation so that other people could come after me and be successful with it. So

Scott Benner 15:43
you're the translator you Yes, you took complicated, technical, almost geeky and weird and turned it into something my brain can absorb? Yep. Is that what's at the loop kit? Dot GitHub dot whatever dot fours? Yeah,

Katie DiSimone 16:01
even that, even that I wanted to simplify. So it's, it's loop docs.org LOPDOC s.org

Scott Benner 16:11
O P, I'm gonna write to a DSC s dot o RG

Katie DiSimone 16:15
and be intact. It's really, you know, honestly, I totally get it like when you when you come into something technical. From the first start, as soon as you tell somebody, you're gonna build an app onto your iPhone, half the audience leaves the room and goes, I can't do that. And what I promise you is that you absolutely can, it is really, really not as hard as hard as it seems. It's super, super simple.

Scott Benner 16:42
My understanding here would be that this is not, I mean, this is not a medical device company, right? That's giving you this, basically an algorithm that's going to tell your CGM gonna tell your pump what to do with the information from the CGM. So no one can take responsibility for this. If you do this, it's it's on you right now. It's it's do it yourself in the most most meaningful way you are doing it yourself, no one is helping you if something goes wrong, it's all on you. It's a decision you're making on your own. And it says that very much, right? I'm just saying now, it's the first time I'm looking at, at loop. docs.org says you take full responsibility for building and running this system, and you do so at your own risk. So if you want to get involved in this right now, Katie is going to tell us now about how to get it set up because and I know everyone who listens is going to be thrown off by this. I'm going to try it. And that trust me, Katie, you have no idea. Everybody's just like no, Scott said he was scared and he can't do it. And trust me, I am scared and I can't do it. But I think that by having Katie on the podcast, I now have a Sherpa that I can bug. I am going to figure out how to do this. And then I'm going to report back to you guys how I did it. And then I'm going to report back to you if I like it and whether or not we're gonna stay with it or not. Because Katie, while I believe that this is incredibly important for the large majority of people with type one diabetes, I think they're going to have results that they've just never seen before. We already have really good results. So if this improves my life, then I'm all for it. By the way, like I'm not I have no, I have no ego about this. I don't need to be making decisions about Temp Basal increases and Temp Basal decreases, like you know, throughout the day, I don't care if I would like it to just work. And so I'm super excited to try it.

Katie DiSimone 18:32
That's, that is, you know, you you just said something that kind of triggered in me. A funny part. But it took me a long time. We've been looping for two and a half years, roughly. And I've had an evolution and how I appreciate the system. When we got on it. We were fairly low carb only because it was the only way we slept at night. We just you know, we were going through an evolution we were only a year and a half in. It's a teenager, she's changing. We're changing. It was very, very hard. So we got on loop. And it was at the time, we were mostly focused on E one Z and blood sugar control and all of that kind of mindset. And then she became a tea and she wanted more independence and I wanted more independence. I didn't want to keep talking to her about diabetes. This was silly. That's just we had a life to live. And what looping has done is is made me realize just how much potential damage I was headed into with navigating that very complex transition of an independent type one team. And loop gave me back the ability to understand how to let her live her life and how capable she was and how she could do this and that the other Part of relieved for me is part of the reason I was doing so much help on it was I felt like if I shifted that responsibility that she was asking for even though she was asking for it, I still felt a huge, enormous guilt that I was somehow saddling her with now this enormous responsibility. And seeing Loup work for her literally like a like a, like a nanny, like a personal assistant that carries the umbrellas of the rich and famous stars. And, you know, the movie festivals kind of thing. Like, who can afford that? That's how Lupe has been for us is that it's this umbrella carrying personal assistant for her. That makes that shift over so much easier.

Scott Benner 20:41
Yeah. Insulin concierge? Yes.

Katie DiSimone 20:44
That's a great, that's a great term for it. And so,

Scott Benner 20:48
Katie, patent pending?

Katie DiSimone 20:49
I think you should. That's your new that's a new hashtag, you should, should do that. Because it really, it redefined how our relationship was. And it took a lot of diabetes conversations off the table, which I'm so grateful for. And it wasn't at the expense of good. Anyone see results or all of that kind of stuff. It was less effort, less lows, great a onesies and less conversations. It was win win win all the way around. Yeah.

Scott Benner 21:16
So we have. So here's where my excitement lies as I sit here and just look at this image that you guys have up on the screen of the the loop app on an iPhone. So I'm not even though there are a couple of people who like to say that I have a lot of ego and I brash about, like how well we're doing. What I'm saying here is, I have gotten this figured out, my daughter doesn't go over about 151 70, more than about twice a day, she doesn't get dangerously low more than maybe about once a year, you know, we don't get under 70. Very often, she's mostly between 70 and 120 give a lot of stability. But it's come through these things that I'm now realizing as I'm staring at the algorithm, there are these things that the algorithm understands mathematically that I understand. In English, I don't know if that makes sense or not. And, and so I'm super excited to see the feedback from the app as far as like active insulin, insulin delivery, and glucose levels. Because I actually think that this app can take me farther in my understanding that I am and I really thought I was about at my peak. Honestly, I didn't think there was much more I can understand about this. But seeing this information, I think I can mine a lot out of it. And and, and really go on to be able to describe to people who don't have this app, my ideas but in better detail, and maybe more easy detail to understand some bumps. I'm getting excited. So this is good. Okay, so let's go through a couple of things

I need a Dexcom I have that. I need Omni pod because it works with Omni pod. Now I have that and then I need something called a Reilly link and as soon as you say that in the past my brain would go okay, I'm out Forget it. Right. But but but let's let's make it let's take away Riley link. And I don't know did you see Spider Man into the spider verse by any chance? No, I have a tastic movie you really have to make time in that one of the Spider Man men Spider Man's one of the guy's calls something electronic a goober he says there's always something like this in every one of my problems. I just call them all goobers. So let's call the Riley Linka goober. Okay, and so. So the pump has to get information from the CGM and your phone needs to talk to everything. The problem is, how does a phone talk to an insulin pump? It talks through the goober so that's it the goober is the bridge the Riley link is the bridge. Don't be scared by it. It's a thing that makes a connection in the future. There'll be there'll be some the I guess the Bluetooth pods right when for Dash comes out and then you guys will come out with something where that's right in the app and then the Riley link will be gone at some point, right?

Katie DiSimone 24:20
Yeah, so the DIY Katie says the Riley link is necessary because the pump speaks one language and your CGM and phones speak a different language. Gotcha. Your your phone and your CGM are speaking Bluetooth. There are over there speaking that one language your pump is speaking with radio. And so those two languages need a translator. And that's what the rilink does is it bridges or translates between those two different languages. So what tide pool Katie's hat is saying is that the next phase of looping will be when you don't need that translator and that the pump is speaking Bluetooth. and the phone is speaking Bluetooth and your CGM is speaking Bluetooth you don't need a translator anymore. And so the phone will be able to directly communicate with both devices. And so tide pool loops development is focused on insulin pumps that have an eye pump designation and Bluetooth capabilities built in.

Scott Benner 25:24
And can I ask tight poke at a question real quick? On the pods all for this right? Like I've spoken to them, they're super excited to have a relationship with tide pool.

Katie DiSimone 25:34
They are incredibly supportive. And kudos to them for recognizing a community need and stepping up and partnering with tide pool to do that I I am as a parent of a team Wendy actively involved in the DIY community incredibly heartened by the commitment they've made with title to bring that forward. Yeah,

Scott Benner 25:58
because at some point so that people understand, you know, let's say that we don't I obviously Katie's not gonna tell me timelines, and because you need to be able to hit timelines and their company and all that stuff. But let's just make up a day and say that a year from now, tide pools going to have this setup. So you don't need your grouper. And it's just going to talk to the Bluetooth pods right? On the pod might not be ready with their horizon system by then. But you can use you'll be able to use basically tide pools algorithm with loop to do that. If one day or when one day, excuse me on the pod comes out with their horizon, you get to decide you get to use their algorithm, then try the loop algorithm and say, well, listen, I this one works better for me, I'm gonna use this one on the pod completely okay with that, for those of you who are who are newly diagnosed, and have not been around diabetes for a decade, or more, like like I have, that's unheard of, for a company to just be like, hey, you know what, if this works better from you, and it's not from us, we don't care. Just we want you to be happy. That's insane. Like no one says that. Everybody always wants you to tie down and locked into their thing. But this is the beginning of a whole new world. Super exciting, you should be genuinely jacked up that Omnipod Zed on this, because this is just, I think the beginning of a lot of good stuff.

Katie DiSimone 27:16
It's a monumental shift. And it really can't be oversold or overstated. How big of a shift this is towards understanding the needs of the community. And saying, I believe that the marketplace can

Scott Benner 27:34
absorb this decide for themselves too.

Katie DiSimone 27:37
Exactly. And there's so many people that aren't on pumps. And I think there is a huge portion of people that aren't on pumps, not just for access issues, but also for choice issues is that there's not a product that offers them a lot of choice, you're locked into one. And for Omnipod to say hey, listen, we support our product, we support this new tide pool, whatever the system is, like you say there into the interoperability and you can choose and it's amazing, it really, it's it's visionary, and I'm completely supportive of that kind of vision. I think tide pool has that vision to putting on a little bit of a toot their horn here, but really a nonprofit coming in and saying we're gonna take on this, this huge task, it really is a lot of work. If it's amazing, and we have JDRF support for tide pool and Helmsley Family Trust is sponsoring a job observational study for loop users in the US, that's going to provide a lot of insight into how the system's working for people. So I really look forward to kind of getting this project down the road and showing what it can do for a lot more people who perhaps like you mentioned at the start, look at building an app on their phone and say, That's just not for me. Yeah.

Scott Benner 29:03
Okay, so we're gonna get to the building part in a little bit. But I wanna understand the using part. First, I want to talk about the fun part before I talk about the heart. Okay, so, Katie, you don't know me. But when my daughter gets a plate of food, I look at it. I think that's 12 units. And I'm gonna break it down into an extended Bolus. I'm gonna do 30%. Now do the rest over half an hour, we're going to do a Temp Basal increase of 75% for an hour and a half. And that's that. And then if I'm right, great, and if I'm wrong, I adjust. I don't count carbs. I don't know my daughter's insulin to carb ratio. I don't actually believe she has one. I don't believe any of us have one. I don't think there's a static insulin to carb ratio. And I don't think there's a static Basal rate. I think all of that some old timey BS way before this stuff was available to us before this technology. I think that was just the best people could do. And so how different is it going to be for me now? When that plate of food comes out, do I still get to guess at how much insulin is? Or do I now have to count the carbs? Or what's the real? Like how does it work in a real life situation plate comes out. What do I do? Are you looking for delicious low carb snacks and meals? Well, if you are, look no further than real good foods. You ready? You want to hear it. They have newest offerings, breakfast sandwiches that come and sausage and bacon of course they have the chicken crust pizzas, and personal supreme personal pepperoni and personal three cheese. Cauliflower Crust Pizza lovers. Do not miss the vegetable pizza, pepperoni pizza margherita pizza and cheese pizza. All of these come in delightful variety packs as well as one at a time. Have you had an enchilada for lunch lately? How about a pork enchilada chicken enchilada beef cheese, or go crazy and get the mixed case. Real good foods also has real good poppers bacon and cheddar, jalapeno, white cheddar, artichoke and cheese and pepperoni and mozzarella. Maybe you want the chicken crust pizza, but you don't want the personal size, go to the seven inch, again, cheese, supreme and pepperoni. And if you go to their website, they got a pro tips area. Now it's not like our diabetes pro tips. These are pro tips about how to cook the real good foods to perfection. Because real good foods want you to have a real good experience. Now what could make your experience better, better than having what I've just described you sent right to your home is having it sent to your home and paying 20% Less, you'll see other coupon codes out there for real good foods for 10%. But please, I told you a good foods for the Juicebox Podcast listeners 20%. I demand that and so it will happen real good foods.com use the offer code juice box, you can also find a link to real good foods in the show notes of your podcast player and at juicebox podcast.com.

Katie DiSimone 32:01
Yeah, so for you, it will be an adjustment because conceptually, the same statements that you just made all still apply. The difference is, instead of knowing your insulin dosing, you're going to be refocusing on carb entries, because you will have to use a carb ratio still, the whole premise of loop is that it makes a prediction of your blood sugar over the next six hours, and it says this is due to these factors. And one of those factors is your carb entry that you put into it, you say I'm going to eat 12 grams, this is what based on my carb ratio and my insulin sensitivity and how much I have on board, this is where it's gonna go. So the carb ratio is still an important part of making that prediction line. That said, it's, it's not an insurmountable shift, because I actually was much like you prior to going into looping is that I knew these things needed to extend a Basal and these things needed. Or extendable as, excuse me, or maybe these ones get an extra hit of insulin in two hours. Those kinds of things all translate and instead now instead of saying I need two units here, you get a carb ratio, and you say, Okay, if that previous thing needed two units, and my carb ratio is one to 10, you just do it now as a carb entry instead of an insulin entry. So well, it will be a shift,

Scott Benner 33:38
okay. And on the image I'm looking at right here, there's like pictures of like, I see a taco, I see pizza and I see candy, do I tell it 15 grams, and it's this kind of food?

Katie DiSimone 33:47
Yeah, see, that's the really cool part loop is the only system that does this. So for people who know after, after you eat a pizza for the first time, you know, if you gave everything that you need all upfront, you'd be low, and you'd be incredibly high later. So what loop dies, it's got this really amazing ability to extend your carb absorption and say this foods going to be a really long, slow burner, I'm going to be fighting the impact of this meal for six hours, or four hours, you can tell it that and the way that as you described, you know your meals, you know that this meal impacts your daughter this way. And it might not be the same for everybody. But everybody kind of has a sense of this particular plate of food kind of does this. And you can tell loop that ahead of time and it will watch for you. So for pizza, for example, let's say you have 100 grams of pizza, and you know that you need about 60 grams worth of that bullet up front. And maybe 40 grams of that later. And you think a bit in terms of your Temp Basal is that you send stuff but you could say I need about two thirds of that upfront and maybe a third of that whole Will insulin amount later loop actually has that built in, when you tell it your food is going to take a long time to absorb, it knows that if it throws all of the insulin on board early, you're gonna go low early. So it will withhold some of that Basal some of that Bolus recommendation, because it's going to keep you from going low early. And by withholding it early. It also knows that you're going to need some later and it will automatically add that as high Temp Basal as soon as your danger of going low, has passed. So it basically functions as an extended Bolus for you when you push that pizza button. Yeah, so

Scott Benner 35:42
I have to tell you that I had I'm so bad with names. But like two years ago, I had that that woman on the girl who like made her own AP, like, you're gonna know who exactly what she has? Yes, Dana, I had Dana on. And I had Dana's husband on, they did him in two different episodes. I don't know why I did that back then. But I thought it was interesting. And what I took away from those episodes where I just asked, that still is like a silly question. I was like, So how often does it Bolus she was really most of it's handled by Basal rates. And I thought to myself, like, it was like, somebody clocked me in the head and the light went off. And I was like, That makes so much sense. And that's it, that conversation helped me, you know, supercharge what I was already doing. I was like, oh, okay, I'm going to use more basil. As I look at this, my next question is, does it learn? Does it learn?

Katie DiSimone 36:34
Yes, and no, it doesn't learn long term. So for example, it's not looking at your last day or week and say, Oh, you look like you're running a little sensitive. It doesn't do that. But it does do some near term looks at how it itself has been doing. It looks as its own predictions. So basically, it looks over the last hour. And it says How close was I and if it thinks that it was really far off, it will wait the next 30 minutes of data and say I've been off a little bit, I'm going to help you out a little bit more, because something's going on in the near term. And we'll fix that. So in the short term, yes, it looks at its data, but it's very short term, in the long term. So there's this one thing you're talking about, like learning systems within loop, there's a really incredible line within loop. That's called insulin counter ACTION EFFECTS. It's a big name. But basically, what it means is that loop has a screen that you can tap on. And at the end of the meal, it will say you told me this was a 50 gram meal, actually, based on your blood sugar response and how it handled it, it actually hit you more like 63 grams. And so you can actually learn a lot from loop. When you look at your food at the end of the meal, you can go, wow, you know what? I see what it's saying, based on my blood sugars, that meal treated me as if I was 80. So you know, nutritional labels aren't right. And sometimes you're at a restaurant and you're like, I'm still trying to learn this meal. How, how much do I give up front? How do I, how do I Bolus this meal loop will provide that imp that impactful statement towards you, or for you at the end of the meal and say, Hey, that meal treated you like this. So the next time you go back to have that meal, you'll be better informed.

Scott Benner 38:25
So this is like a blown up idea behind all carbs aren't created equal. And yeah, and it's an extension of what I told you where I say I stay flexible, I put the insulin in and I see what happens. And then I stay flexible. So in for your knowledge. If I were to do a you know, do the regular Pre-Bolus that we do you know as far as time goes, and Arden starts eating and 30 minutes later, I see a diagonal up arrow, I do what I call stop the arrow, I stop the arrow from from going up, I use little bits of insulin to make a stop. And then the next time I would say to myself and I preach it to people all the time. You look at a meal and you think oh that's five units. And then you later use a half a unit to correct it. Well then next time don't look at the same meal and go that's five units say to yourself, that's five and a half units.

Katie DiSimone 39:14
You can't see me I have my hands in the air gone. Yes, yes. Yes, exactly. is dynamic thinking is probably the biggest tool you have in your tool belt for a successful

Scott Benner 39:26
career. I wish I knew what a moron I was that anything in life has struck me well is is absolutely a miracle but that I figured this out, you have no idea that it was me. Doesn't make any sense. Like this is not something I should have figured out. And I don't know how I think I A lot of times give a lot of credit to writing on my blog for so long and wanting to help people and seeing that I had to find out what worked for me. And then I would wait months I would never share anything right away. I'd like let me make sure this is really valuable before I tell somebody about Got it. And then I would tell them about it. And I kept building. And before I knew what I realized I had like these, like 10 basic tenants of how to keep a blood sugar stable. And I was like, wow, this is like a system. Like, it's a way. Like if I put it all together, it makes sense, you know? And still, I swear, I really wish you knew me because that I figured anything out is just hilarious.

Katie DiSimone 40:20
No, it is it is absolutely huge to have a dynamic attitude. If, if I always put it as respond to the information you're seeing, not the information you thought. And so if you're seeing that a meal is actually cheating you like 10 grams more than what you thought you had to give more, take that into account the next time

Scott Benner 40:42
and if the people who are listening aren't thinking right now, trust what you know is going to happen is going to happen, then you have not been listening closely enough. Okay. So you have to trust that what you know is gonna happen, it's gonna happen, you can't get high every morning at 8am. And every morning at 745 think, Oh, well, I hope it doesn't happen today. It's gonna happen. Give yourself insulin now. Right? Like so? Oh, I'm not see. All right, okay, let's calm down. Because I think we're coming up to the point where I'm gonna get upset and sad. So I see how it works, I see that my daughter will be able to, you know, count carbs and do things like that. I also, by the way, believe, holy that people eat mostly the same thing over and over again. So it's not like you're counting carbs forever, or trying to figure out how much insulin a meal is forever. Usually, you eat about the same 20 or 30 or 40 things, eventually you'll figure out figure them out. Dex, calm, you want a Dexcom, you might not know you want it or maybe you do know you want it one way or the other. You'll want it dexcom.com forward slash juicebox. Here's what you're going to get when you have a Dexcom, a G six continuous glucose monitor, you are going to get information. And as they say information is what do they say about information? There's a saying about homozygote? I know there's a saying about information. I got a right here. There's 486 sayings about information. It's not helpful. No, that's not it. Hmm. That's kind of deep from Albert Einstein, but not the one I was thinking of. Not that one. God, turn DNA is like a compute now. Or maybe there's not a saying about information? Well, I'll tell you what, I'll make one up right now, when you get the information back from your Dexcom, you make better decisions about your insulin. That's all. There's nothing else to say that information can come to you with a Dexcom. And a couple of ways. One way, share and follow available for iPhone and Android. You know, that means share and follow. Like there's an app share, and there's a app, you know, share app follow up. One of you probably like the person you love, who has diabetes has to share up and then another one of you, like a person who cares enough to pay attention to their diabetes has the follow up. And then there you go there diabetes does something that goes up because the ad is trending in one way is trending in the other. It's moving, it's dancing. As you can tell, I'm making this episode late at night. And I'm completely dopey. So just by a Dexcom dexcom.com, forward slash juice box links in your show notes in a juicebox podcast.com. You will not regret making the jump to continuous glucose monitoring with Dexcom. So here I am. I'm Scott, I'm standing in front of my microphone. And I have ordered my Reilly link, which is on backorder. And by the way, if you know anybody who can help me with that, Katie, I would appreciate if you put in a good word. It's going to come to me, my goober is going to show up in the mail. And there's other things I could probably be doing before it gets here. Is that true?

Katie DiSimone 43:48
Yes, you can do everything before it gets here. Except actually, you can build the app, you can get other things set up. If you're ready for it. If you're a Nightscout user, you could get your Nightscout set up you can you can do everything you can except for turn on the right link and

Scott Benner 44:09
Okay, and this is not going to get in the way, by the way of my Dexcom share, that's still gonna work fine. Everybody's gonna be able to see that stuff.

Katie DiSimone 44:17
Totally. It's still you can still actually use your exact same Dexcom app, your Dexcom alarms are all still the same. Basically what Luke does is it eavesdrops on your dex comms communications, and so it doesn't interfere with your Dexcom.

Scott Benner 44:31
Okay. All right. So, if you were me, what would you do first?

Katie DiSimone 44:38
If I were you, what I would do first is kind of conceptualize what your game plan is. Number one is, get your computer up to date and also kind of let me take one step back on my Instagram account. I do have a loop advent calendar that I did just kind of on this topic, as I was trying I need to prepare the community with this is coming. And here's a really small digestible day by day. Advent Calendar of day one, make sure your computer is up to date. Do you have Mojave macOS? I'm kind of explaining what starts to sound like technical stuff, just pay make sure your computer is up to date. And it has my Mac, is that right? It does have to be a Mac, yes, it has to be a Mac running what they call Mojave operating system, which is their latest one.

Scott Benner 45:30
Oh, I see your Instagram account. Look at you. You're delightful. Look at this. Very nice.

Katie DiSimone 45:36
So yeah, so you can run through each of those admins day by day and just sort of take it in tiny digestible chunks. And do each of those. Basically, you prep your computer and and this is the part that looks intimidating on the website. But it's actually not is that each of these are natural stopping points as I've tried to lay out the pages in the building the app section into natural stopping points. And so you prep your computer, basically, you want to make sure your OS is up to date your operating system and that you download a free app from your app store that comes from Apple is called Xcode. And basically what Xcode is, is like you present that code for the application for the loop application. And it compiles it all and builds it into a nice little package, you plug your phone into your computer, and Xcode puts that app onto your phone. So you're literally downloading the loop code from us online. And you're using a free app on your computer. You press like four buttons, and the whole thing builds by itself. That's how easy it is

Scott Benner 46:43
fancy as now, yeah, I have already while Katie was saying that, even though I swear to you, I didn't know she was gonna say it. I've already downloaded Xcode onto my computer. Yes,

Katie DiSimone 46:58
that's step one. If you get that on, it's actually a pretty big download. And believe it or not, that's the longest part of building a loop app is downloading. Okay, and then I have a cup of coffee, and you're good.

Scott Benner 47:10
Okay. And I need a developer. I have to be like an Apple developer. Right? Yeah. Because Because for everyone listening, I am technically making my own iPhone app right now. And they're gonna give you obviously all, you know, Luke gives you all of the instructions and the you know, and the code and everything you need for it. But you have to do that because it remains your responsibility. And yes, right. And in the future, if I want everything, you know, work in the way we want it to work, but tide pool and everybody's got their Ok's and their FDA clearances and everything like that, I will just download this app from the App Store I'm assuming or downloaded from tide pool.org or something like that. And it's gonna go right on my phone, I'm not going to need to be a developer or have Xcode or anything like that. Is that right?

Katie DiSimone 47:52
Correct. The tide pools project is basically taking the fundamentals of the DIY loop system, and taking that through FDA approval. So the study is going to help solidify what needs to be done to make that app able to be distributed as a medical device under FDA approval through the App Store. So yeah, that's where the that's where the two projects between DIY and type lube start to diverge is that concept of being able to download this on your app store on your iPhone, and what needs to be done to make sure that all the FDA clearances are done.

Scott Benner 48:32
So yeah. So so tight pull Katie, eventually, this is just going to be checkboxes and drop down boxes on an app.

Katie DiSimone 48:41
Yeah, what we envision is that you'll as type hello, Katie, I'll speak now is that you get to go to your endocrinologist, talk to them about your settings and your carb ratios and make sure that you have some reasonable settings, they prescribe a type of loop for you. You have your components, and you get to go to the App Store with your prescription number and download it.

Scott Benner 49:05
Okay. All right. Let me think. I'm thinking that it's coming in my head, I'm figuring it out. So it's going to look, it's going to look like a lot but Katie has as a person who's done this, not knowing what she was doing and getting what would probably be the best expert advice that she could as she was going along, has turned it into the simplest steps you could possibly have now. I'm going to do this and I'm going to whatever my Reilly link comes, I'm going to I'm going to be ready. I'm going to be set up and I'm going to go and I'm going to try it and see what happens. What is my expectation for a person who lives between 70 and 128? Like, in my mind, I think my first excitement is going to be sleeping soundly overnight. Is that is that the simplest win that I get from Luke, do you

Katie DiSimone 50:01
Yes, for sure sleeping through the night is unbelievable. I think I didn't know what I had started missing until I started sleeping again. Good example last night, my daughter was out to the movies with their friends and needed a ride home at 130. In the morning, it was a drive in double feature far away. And so I was up until 130. In the morning, I can't even tell you how tired I was. Because I've gotten used to getting a full night of sleep all the time. Now, it really was daunting to have to go back to the olden days of missing hours of sleep.

Scott Benner 50:37
You're making people cry right now you don't realize that but there's like 1000s and 1000s of people listening and they're like weeping in their cars. And while they're working out at the grocery store and stuff like that. So that's, yeah,

Katie DiSimone 50:47
I'm a I'm a different person. When I sleep. I'm a nicer parent, I'm a better spouse. There's like a lot that goes with sleep. Yeah.

Scott Benner 50:54
There's plenty of conversations in this podcast where I tell a story about I was so exhausted at one point, and I didn't know it. And then I went away for a week without my daughter. And about the third or fourth day into the trip. I thought to myself, Oh, my God, this is me. Like I remember having thoughts like this. Yeah. You know, like, and being clear headed and that sort of thing. So that's my, that's my excitement. Can I ask you something? Yeah, say I decide I like loop for sleeping. But I want to just stick with what I do for eating, can I do that

Katie DiSimone 51:26
100% You can turn loop has one slider, it's super simple. It's called I opened or closed loop. If you open your loop loop will let you just get the recommendations but not automatically put them in. So it will use your scheduled basil just like your normal pump therapy would, it would just give you your basil that you have programmed in. And you can choose to deliver the insulin any way that you want to, you can enter the carbs, and you can choose your particular Bolus sport. So let's say during the day, you want to say, You know what, I still am working out my carb ratios, I'm still figuring them out. I just kind of want to do it one meal on a convenient Saturday and see how my settings are. But in the meantime, during the week, while she's at school, I just want to keep to our old paradigm until we can get to, for example, right now I'm thinking summer, you know, summer, I'll be home, this will be easier. Absolutely. You can go to school, keep it an open loop, they can enter their carbs, provide whatever Bolus number they want, and loop won't be taking any extra action. And then when you come home at night, you can go ahead before you go to sleep at night, you can turn on the Closed loop switch, you just toggle it right over. And it'll be looping overnight.

Scott Benner 52:43
So being an open loop would show me what the algorithm is thinking because it would say to me, Hey, right here, if I was you, I do a Temp Basal increase of

Katie DiSimone 52:52
absolutely, oh, every five, every five minutes across the top, you'll see the recommendation update. And I'll say this is the new Basal rate I think you should set so you'll be able to see if it's greater than or less than where your existing settings are. And you'll see the prediction too, as well. You'll see the prediction go up and down. I think that's one of the first things that kind of freaks people out as they see that prediction. They're like, Oh, do I cheat a low now because it's chosen six hours, I'm going to be low. That prediction line is always as if no other actions are taken. And that's the whole thing is that loop is going to take actions to prevent or change what is in the future. So if you see a low coming in six hours, you don't need to treat it right now. loops going to be cheating it for the next six hours and staving that off.

Scott Benner 53:43
And so that never happens. It's just like a time travel movie. In a time travel movie, sometimes they show you what's going to happen in the future. But then the people in the past make better decisions in the future never happens.

Katie DiSimone 53:56
Yes, that's exactly what loop is doing for you. Is it saying? Oh, wow.

Scott Benner 54:00
And Katie, by the way, now you know why the podcast is popular because I can take incredibly complex things and turn them into moron talk that everybody can understand.

Katie DiSimone 54:10
I have tried to do that with loot building instruction. So I think you're I think you're my kind of people

Scott Benner 54:15
like seven year old in my mind. So okay, so I also just realized I might be more people are gonna laugh because I don't think I knew this about myself. I think I'm more of a diabetes geek than I thought I was. Because when you said you could open the loop, and then see what it was thinking. That to me takes me back to back before CGM when I used to test on it all these wacko times that my endo would be like, Why did you test 45 minutes after she ate and I was like, Don't you want to know what's happening? And she was like, No, and I was like, No, I think we should know. You know, like, I'm gonna keep testing. She'd always be like, I don't understand how you're a one sees her like this. But you're showing me all these weird blood sugars that don't make sense. I'm like, because I'm tracking what her blood sugar is doing so I can make better decisions. I really think I really think that with six months with loop, I might have to have my head made larger, not for my ego, that one person that left the review, but for my knowledge of diabetes, because I really think this is going to just kick it into another stratosphere.

Katie DiSimone 55:14
It really, it's a truth serum, it really tells you a lot about your settings, your understanding how you conceptualize, reacting to things. For example, a lot of people as they're getting used to this are impatient with insulin, they'll say, I don't want to wait it out. And they'll rage Bolus or or they think the rage Bolus, and they're actually not even bold enough with insulin, you know, and they say, Oh, I'm so scared of going out, having the feedback from a loop constantly telling you, hey, here's what I would do. And here's oh, by the way, your meal absorbed 20 grams more than you initially told me it would be and lasted, it also tells you the time and took two hours longer to digest than you expected. That kind of information is so powerful to relieving the diabetes burden, because it's fine tuning your expectations. And when you change your expectations for going into it and say, Yeah, you know what, it's okay that this meal choose me as 65 I feel comfortable, something has helped me learn better.

Scott Benner 56:21
Okay, I'm so proud right now. And I don't know if you did that on purpose. Or if that was by mistake. Either way, I'm proud. You said bold with insulin, which is really the whole tagline for this podcast. It's that's my hashtag. It came from here, if you don't know that, I'm just thrilled that those words are somehow in your brain, which means it's getting out in the to the stratosphere. And if you did know that, I appreciate you listening.

Katie DiSimone 56:45
Well, I actually heard that from a podcast interview you had with T one Junebug because she's a good friend of mine for several years. And I saw her use that phrase and I thought yes, that rings true. People are scared to dynamically think they'll see the same blood sugar rise, the same blood sugar rise, the same blood sugar rise, and yet say but the label told me it should be 10 grams or my endo told me it should be this and, and stringing that along. And and being a more dynamic thinker. And being bold with the insulin taking the insulin you need for what you've seen over and over again, is really good dynamic thinking.

Scott Benner 57:29
Yeah, I appreciate that. I was just speaking with a mom last night. And I said to her, you have to I said, I know that. You know, I haven't given you any advice here because I don't give advice. I just pass on my own stories. But I told her I was like, I can give you this one piece of advice. I said, I would stop thinking about all the things that people have told you to do, and told you not to do and just apply a little more common sense to this. You know, like, like, stop overthinking it, your blood sugar's high, you need more insulin. That's kind of just I'm down to like, if I see something online, people are like, look at this graph, and I go and I type more insulin. And then I hit Enter, because I can't I can't explain it any more. We do it here enough. But sometimes I'm just like, how can you look at a 300 blood sugar and think I don't understand what's wrong, I know what to do. Of course, you go, what's wrong, you didn't use enough insulin. And so

Katie DiSimone 58:21
it's not going to be it's not going to be the same and it's not going to be perfect. My daughter gets nervous around certain situations and her blood sugar spikes. And Luke doesn't know that's coming. Nobody gave it an announced warning. Nobody gave me an announced warning or my daughter. And so there's ways that you can help correct that faster as well. You can still override and give more insulin and give a correction. There's a lot of information built into loop to help you with that decision making process if you choose to take that interactive Step. If you're the type of person that just says you know what? I'm happy. I'm happy with a little wider range. And I just want less cognitive burden of interacting with it today and or longterm. You can let Luke do that as well. It has all the information put in there that it will meet you at your comfort level and help you make the most of where you are. I'm gonna say

Scott Benner 59:17
something real quick. And then I'm gonna ask you a question. What I'm going to say first is for everybody listening who has come to count on the podcast, I just want you to know that even if I do this and stay with it, I think it's only going to enhance my ability to talk to those of you who aren't doing this. So don't worry about that. I think I want to ask, are you comfortable telling me what your daughter's a one C is on loop?

Katie DiSimone 59:38
Oh, yeah, totally. She started loop at 449 I think and again, we were low carb heavily intensively, lots of work, lots of communications, lots of texting, lots of less sleep. So we are working hard. She is now Got a five, six? What was her last 156? I think, and she is as high carb as they come has become a vegetarian. So we have no, no like low carb meals ever. And she is completely independently operating and bolusing and doing everything through loop. I have not told her how to split a Bolus in, I'm gonna say a year. She is completely handling all of that just by loop recommendations and putting it into loop. I hope I don't tear up, it has changed everything. I now have the space reclaimed for what used to be diabetes conversations I now hear about her friends at school, I hear about the things she wants to do I hear about going to the beach, and can I go on a date? And I hear the things that I'm supposed to be hearing and they're not laced with? Don't forget to bring diabetes into this conversation. I don't have to do that.

Scott Benner 1:01:04
Don't forget, did you I start too many sentences with Did you? Or you know, can you tell me or what does the say? There's, there's still listen, I'm gonna be honest with you. We don't talk about diabetes around here very much. Because we really are, we just have a rhythm. Like I don't know another way to put it. But at the same time, it still happens. And if it could be less, that'd be amazing. And if it's less for me than I imagined, it's going to be much less for a lot of other people. I have to say that this is this is the future that I always imagined, I always thought it was going to come more in like 2020 like writing that was my kind of estimation. And I was always happy with that because I thought well, that's still a couple of years before are no go away to college. So I'm okay with that. But just the idea that it could happen sooner.

Katie DiSimone 1:01:57
It's got me It's amazing. I'll give you an example. When my daughter goes to summer camp, we always talk well, do you bring lip? Do you not bring loop? And, you know, I realized that sending her to camp with a non FDA device puts a little bit of burden, an ask on those camp staffers. And, you know, so I'm cognizant of maybe we don't loop when we go to camp and certain camps even don't allow it. But our particular camp is supportive. And but it's always, it's always funny, she goes to camp because she doesn't want to feel different, right? She's got her her crew, her tribe. And she doesn't feel different around them. But she does feel different. She's perceives this if we talk about it in April, or may have going to camp using loop because she's worried none of her other friends will be using the loop. And so we have this conversation every summer for the last two summers about whether or not she's going to live there. And every summer, she goes into it telling me, Well, I'll probably take it off while I'm there. I'm taking it now. But I'll probably turn it off because I don't want to be different. And she never turns it off. And she comes back to the pickup station after two weeks away. And all of her friends are around her and I'm telling you it's like a little gaggle, there'll be five teenagers with her that I'll go. Katie, can you get us on loop too? You want to use it too? And so, you know, I kind of take that, as my bellwether of how good the system is, or isn't is if adults weren't involved and parents weren't involved, what would the kid decide to do? Because I think that's a really important aspect is the informed decision making process involving the kid and letting the kid be a part of that? And so when she comes back from camp, and there's five kids with are saying, Can you help us? We want to do that, too. I think it's a good sign that the system is well designed and helpful, as opposed to an extra burden that just isn't useful.

Scott Benner 1:03:52
That makes a lot of sense. Can I pick your brain about something else as a as Yeah, as a person who's obviously given a lot of their time and effort to the diabetes community? I think that overall that shows the your concern for people who you know, who have type one and people who you don't know who have type one, I feel similarly. I don't ever have this feel fear. But I know some people do that if you take away the idea of how to manage diabetes, that if the technology is not available, you'll be lost. And I don't talk about that here. Because I think it's silly to make somebody struggle and cry and be upset and exhausted just so they can understand how a Bolus works. I don't think you need to do that. I have dedicated this podcast to fast forwarding people through that whole process. But I'm now I'm projecting into the future. Right. I talking privately and have been for weeks and months with a mom of a little girl who is so newly diagnosed that she is honeymooning to the point where she doesn't need insulin some days. And it's really going on for a long time. And I'm imagining her right now. And I'm thinking I could put this on her. And she would never know all of the tragedy that I've lived through, and that so many other people have lived through, like figuring out diabetes. And is that a good thing? Obviously, it is. It seems like it is at the onset. But what would happen if that technology like if her insurance changed or something happened, it was just taken from her? Do you think that she'd be gobsmacked blindsided by what diabetes really is without the technology? Have you ever thought about that? Like, I'm just interested in your in your like off the top of your head thoughts?

Katie DiSimone 1:05:39
Oh, yeah, I think I think people would be if it disappeared from us. For us. Would it be impactful? Would we notice it absolutely. Give you an example. We switched to Omni pods because we were having problems with sites on NEOs and Medtronic. So one day during a particularly painful yet again, cannula failure kink kind of issue day. She had to turn off loop, we were just perfect storm CGM fails. Me Oh, failed, we were flying blind. And she had to give herself a shot for the first time in two and a half years almost. And I was away from home, she was home alone. And I said, Can you do it? And she's like, Yeah, yeah, I think so. And she did. And it was daunting, and all of that. But that said, you do what you got to do. And I don't believe in keeping the covers on the couches, and not using the things that are great in life, just because something might fail later.

Scott Benner 1:06:54
I don't, I don't like it when there's fear mongering around advancement. And and I think it happens a lot. I think when Dexcom first came out, there were people running around going, you're not going to understand your diabetes. And I think there are people that tell people, you have to have a do shots for a year before we give you a pump. I think all of that, and I'll bleep this out later. I think all of that is okay, I think that you need to understand how insulin works in your body, and then you're good. And it seems to me that this algorithm is going to understand how insulin works in my body. Now should I still understand it? I should but I but what I'm foreseeing in the future is, is that you're going to go on this and write on the screen, you're going to see what's happening. And you will learn how insulin works in your body without ever having to fumble around with the algorithm is not just going to keep your blood sugar where it wants to be where it wants it to be. It's going to teach you how it's doing it visually. Yeah, that's what I'm seeing here. So now you'd have to translate that back to a pump without a loop or injections, if you got stuck in that situation, but you wouldn't be starting from zero, you'd actually have a fairly fast forwarded understanding of it, you're gonna put this podcast out of typo, you're gonna need to hire me if I can't get downloads on this podcast anymore. Because your loop seriously a fluke puts my podcast out of business, Katie, I'm gonna be pissed.

Katie DiSimone 1:08:16
I tell you what, it really died. That's like a truth serum are the assumptions that people had about their diabetes understanding is

Scott Benner 1:08:24
wrong, guys. You're always wrong. Everybody, I'm sorry to cut you off. Everybody who sends me an email is like, I think this is what's happening. I'm like, No, that's not what's happening. Your Basil is wrong. You know, like, like, no one ever really knows. Because it's, it's, it's, it's this false idea. And there I had somebody on recently who said this thing that just struck me. He said, You know, if you put a pencil in your back pocket, and you rob a bank, pencils don't cause bank robbery. But But somebody thinks it does. somebody sees this cause and effect, and they just say, I saw this, then this happened. So that thing must have been the reason why and we make that mistake so often. And diabetes, it's not funny.

Katie DiSimone 1:09:00
It really it's such a true serum is that people get on when things are automated. That means it's using the same assumptions you put into it. And when those assumptions show, hey, you're trending high, or you're trending low, consistently, people are like, what, but these numbers were set in stone, i These were fine. I was doing fine. And what they don't realize is No, you weren't doing fine. You were you were taking a lot of manual actions to make it fine. Or you were adjusting in other ways that you hadn't realized. And so when it to two wrongs can make a right and diabetes, you can overlook things very easily by having two wrongs equaling a right. Yes,

Scott Benner 1:09:48
there are so many times that people are having a good outcome at 3pm. That's really just from mistake at noon and they have no idea. Yeah, it's really it really is. Once you see it It's I joke about that it's a little old of a reference. But once you see it, it's it's like at the end of the matrix when the bullets start moving for Neo, and he's just kind of like walking in between them and moving away like once you can see it, it's fascinating

Katie DiSimone 1:10:12
loop provides that visual, that visual interface to be able to see it. So one good example. So for example, let's take your correction factor or your insulin sensitivity. A lot of people have a wild guess at that, but they don't really know and they haven't tested it. When you see your blood sugar's on an automated system, kind of roller coastering, up, and then down and up, and then down, you're also probably gonna see what I called lightning bolts of Temp Basal. So you'll get a lot of Temp Basal action trying to correct a rising blood sugar and then suddenly, you'll turn low, and or not low, but you'll start heading down and then you'll come back up, and you kind of get on this oscillation of roller coaster. That's usually because your ISF is, needs to be higher number. So I don't know I'm avoiding using the word weak or strong because people have different impressions of what that word means in terms of where the actual number needs to go. But if you had put in, if you told loop, each unit of insulin will drop my blood sugar 50 points. And you start seeing that roller coaster pattern, that's a really good indication that your your value of 50 actually might need to be up near 70, or a different number higher than 50. Because you basically undersold insulin to loop, it's actually doing more than it expected. And so some of these things about loops, ability to inform you of your diabetes assumptions are really like strikingly obvious. As soon as you start using it, as you start seeing that you go Holy smokes.

Scott Benner 1:11:52
Okay, so I have a couple of just like, like fast paced questions here. So first day of a Dexcom sensor in the first few hours, I don't really lean on it for like, you know, I don't want to put a time on it. But until it's right, like until it's soaked in, it's really working. So do I just go into open loop during that time? Is that what yeah,

Katie DiSimone 1:12:10
you could? No, it's not what I do. But you could, my daughter basically usually ends up changing her sensor at night, which is, I think, the worst time to change a G six. And so the whole first night, we basically get a lot of false lows or compression lows. And what we have found is that basically, loop still does, okay, it doesn't. And in essence, what happens is that you get some higher Basal rates, you get some suspensions, and they all evened out over the course of the night to be okay.

Scott Benner 1:12:44
hammers out the kinks and gets it gets you Yes,

Katie DiSimone 1:12:47
yeah. And then when she wakes up in the morning, finally, the Dexcom is back on an even path, and everything's fine. So for the first 12, for us, it's you know, it will depend on the person, but for us, the first six hours of a new sensor are kind of jaggedy. If it's really far off, we can go into open loop mode, and it's no problem.

Scott Benner 1:13:09
Okay, what about different insolence? Do people see different or does it not like we use a pager? That's gonna be good?

Katie DiSimone 1:13:15
You send me up on that one. Yeah, actually, within loop, we have three different insulin models. So there's four, but three are based on the type of insulin and the user. So there's a rapid acting adult, which is like Novolog Humalog. For adults, there's one setting for children. And then there's another setting for fiasco. So and then each of those settings basically describe how the insulin curve works. If you after knowing your daughter and kind of looking at how things work, say, wow. On our particular insulin, we think it peaks at this amount of minutes, that's actually something you can customize within your loop to say it peaks at this time, we have numbers put in there that are based on the published data of how these things behave and clinical trials and all of the published data. But if you find that for you, your diabetes is different, you can actually tweak and customize some of those things.

Scott Benner 1:14:19
Okay, and so a lot of it's customized Like for instance, can I pick her target blood sugar?

Katie DiSimone 1:14:24
Oh 100% Awesome. That's

Scott Benner 1:14:26
the one thing I would just not like I don't I would I want to sleep more but not at the you know what I mean, not not to say that I don't know what the Medtronic artificial pancreas but it's like at 120 or 140 or something like a target up there. Like I couldn't do that. I wouldn't be able to make that decision.

Katie DiSimone 1:14:43
I'd say out of all of the feedback I consistently hear on the development of closed loop in the commercial market. That target setpoint is is the real critical piece for a lot of people. And on this one, you can set it anywhere you want. We have people setting At that are ultra low carburetors and have a single number target that they really aim for. And there's other people that are doing a much wider range and are. So yeah, it's totally up to you what you want to set it up.

Scott Benner 1:15:12
Okay, is it my so my last kind of nuts and bolts question is do I tell it when a new pumps going on? Like, how much does it care about how old the infusion set is?

Katie DiSimone 1:15:20
If you're on Omni pod, it keeps the theme, Standard Change cycle as Omni pod, it will alert you it's well at 72 hours. Omnipod tells you just pods done but at 80 hours, it really makes you change it and it says you're done done. Loop has the same things. And you can set a custom notification for when you want it to tell you hey, it's coming up.

Scott Benner 1:15:42
What about this? Here's another I said I wasn't gonna ask any more nuts and bolts questions. I have one more. What if a cannula like comes out a little bit? I'm getting some of my insulin but not all of my insulin? Does it know that? What's that? It's not seeing what it thinks it should be saying?

Katie DiSimone 1:15:57
That's a great question. And the answer is no, in a way is that basically, if it thinks you delivered a whole unit, but the cannula actually only managed to get half of that under your skin and absorbed, loops calculations will be a little off, it will think that you have more insulin than you do. And so what you can do is there's a couple of different options, you can open your loop, until that discrepancy wears off, and you get it all changed and figured out, you can open loop and just go back to normal pump therapy. Or you can enter in a fake carb, where you say, Hey, I'm going to eat five grams Bolus mean for these five grams. And basically you're tricking the algorithm to think your blood sugar will rise because you were eating. And so therefore, it will offset some of that it's a more advanced technique. And people kind of start using that in those situations once they become a little bit experienced. But that is an option as well to kind of say, Hey, I'm going to need extra insulin that you think is there. But wasn't there.

Scott Benner 1:17:03
We call that stuff ninja level. So yeah, okay, so All right, so here's what I'm gonna do it because we've been going at it for a while and I want to make this digestible for you. We're gonna stop, I'm going to say thank you. I'm going to ask you, after I get this back, when you come back on and talk with me after I've been using it for a little bit,

Katie DiSimone 1:17:20
I would love to, I think that would be great. And can I have an ask of you?

Scott Benner 1:17:24
I guess so. But I'm not taking my pants off.

Katie DiSimone 1:17:28
So that the ask is that I want to make this system better for everybody else. And make sure it goes there, you know, is able to incorporate all of these things like soliciting impact, feedback. And that job loop observational study is a really important part. And it's the best way that people have to pay this forward and provide meaningful impact. I would love it if people would take a look at the study and donate their data, it can all be done from home. It's super convenient. It's very fast and easy. And it provides important user information, especially from new users, or like just getting on the loop. You're asked questions about like, how did the setup go? How hard was it? Are you technical? Are you not technical? How do you view diabetes, all of that's going to paint this incredibly awesome mosaic of what kind of user experiences have been and just take the system into a better place.

Scott Benner 1:18:27
Okay, so when we've talked about it here, but the next time we talk, I'll give direct, you will be able to give direction instructions to people about how to donate their their data to that. That'd be great. Excellent. Okay, I don't want anybody to worry. I still understand how to be bold with insulin after a day and a half of looping. As a matter of fact, that loop, just like Katie said, is showing me things that I don't think I understood. But I'm starting to, and then I'll be back here to report to you. So whether you want to loop or not loop or lose skipped your Lu, or just keep doing what you're doing, or do what I've been doing for years, which might be what I'm doing again, I don't know how long we're gonna do this loop thing. We're trying it. I can't do a podcast of it don't understand looping. I mean, it's 2018 Wait, is it 2019 Wait, I mean, it's 2019. It is so late at night here. I'm out of my mind. I hope you found this episode interesting. And what Katie had to say intriguing. I certainly did. It got me off my butt to try looping. And as soon as I know what I think I'll report it back here. Huge thanks to the sponsors Dexcom real good foods, and dancing for diabetes. The links to everything you want to know about them are in the show notes of your podcast player or at juicebox podcast.com. But you can always go to dancing the number for diabetes.com Real good foods.com use the offer code juice box, or of course dexcom.com forward slash juice box. I'll see you next week.

Thank you so much for listening today. Please keep Katie and her family in your thoughts and prayers. I'll be back very soon with another episode of The Juicebox Podcast.

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