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Scott Benner 0:00
Hello friends, welcome to episode 1102 of the Juicebox Podcast

Welcome back everybody today Jenny and I are going to do another grand rounds episode we're going to talk about being diagnosed with your regular old doctor. We'll talk about symptoms that could easily be misdiagnosed. misinformation about diabetes, and a little bit about doctors egos. 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. Don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code juice box at checkout that's juice box at checkout to save 40% at cosy earth.com. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juice box. If you're a physician listening to this and you'd like to make a rebuttal or add to the conversation, you can find me at juicebox podcast.com and send me an email I'd love to have you on the show

this episode of The Juicebox Podcast is sponsored by touched by type one touched by type one.org. And find them on Facebook and Instagram touched by type one is an organization dedicated to helping people living with type one diabetes. And they have so many different programs that are doing just that check them out at touched by type one.org. This episode of The Juicebox Podcast is sponsored by the continuous glucose monitor that my daughter wears the Dexcom G seven dexcom.com/juice box Get started today using this link. And you'll not only be doing something great for yourself, you'll be supporting the Juicebox Podcast. This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn. Find out more at G voc glucagon.com. Forward slash juicebox. Jenny, welcome back to the Grand Rounds series. Yeah, are you?

Jennifer Smith, CDE 2:31
I'm fine. Oh, so

Scott Benner 2:34
far, so good. Today, we did our opening intro episode, we've done emergent care. So if you're diagnosed and in such trouble that you're in urgent care and emergency rooms, something like that. But today we're going to talk about, you know, what might happen if you have symptoms that come on and you end up in your regular doctor's office, nothing that makes you go to the hospital, but still lands you in medical attention. So yes, yeah, well,

Jennifer Smith, CDE 3:04
that's an interesting place to kind of start to because most people who have some symptoms that are concerning, are typically going to call their primary care. Yeah. Right. And or talk to the intake nurse or whoever. And depending on what you say, when you call, you may or may not get in today, tomorrow or a week, right from now. So I think it's important to think about how you present the symptoms and the fact that, you know, these are very irregular, this isn't what normally happens to you or your child or you know, the person that you're caring for. And to be really specific in what you say in that call. Because again, it may be a more emergent type of setting. And in those cases, I think what I've mostly seen is that parents especially they don't wait, they just off to the emergency room, you go call

Scott Benner 4:08
this go kid seems sick. I don't want to make another one. Let's do this. Now. I think this is an interesting conversation, because if you have it specifically from the perspective of people who have diabetes, or have been through this, they'll tell you things like I don't understand why doctors offices just don't do a finger stick when you present with the symptoms. And and that's because you know, that's why you think that right? Like I'm not saying if we couldn't snap our fingers and have everybody who had flu like symptoms, get a finger stick, that wouldn't be a great thing. It would I'm sure it would catch a lot of issues. But doctors offices until they see it happen, aren't going to think that way. You know, the problem could be you call your doctor and say I feel rundown. Right? I'm losing weight. Like you're describing how Bringing the flu, and then they'd be right and but who you're talking to, you're talking to the person at the desk at the doctor's office who maybe as a medical assistant, probably, maybe not, maybe you're lucky to get to a nurse, and you start describing flu like symptoms during flu season. And they're gonna say, you've got the flu, because in medicine, and you're trained, so this is just something I know colloquially. But if it walks like a duck, and it quacks like a duck, it's not a lot of reason to think it's a tiger. And so, you know, I think that's how that works. Also, if you know, physicians, especially like general practitioner, people, you'll know that they see themselves more as sometimes just reflecting what's going on in the community, if you come in with symptoms that people have been coming in with for two weeks. That's where the assumption gets made. So it's not it's not even anyone's fault. Honestly, that it gets missed,

Jennifer Smith, CDE 5:55
especially seasonally, and or, you know, we've just had now a month ish, or maybe a little bit more, depending on where you live, of school starting. And so the influx of kids coming in or being called about, you know, my child was sent home from school with such and such, or, I've noticed this, you know, in Frankie, because, you know, this wasn't normal, but school just started. So there's a lot of consideration that's like gray area, when you present with symptoms that they do need a good evaluation, but how it gets evaluated? Is the question.

Scott Benner 6:32
I think that it's important if you're the doctor to hear this. I know. I mean, what what is the number Jenny? How many Americans have type one diabetes? Is it like getting close to 2 million now or something like 1.8 or something? Look up

Jennifer Smith, CDE 6:47
this, I think it was about a year ago that I looked, I usually look in January, when more statistical kinds of things

Scott Benner 6:53
might point out. There's a lot more people than that. And so you're already being diagnosed with something that I think would be considered rare, right? I mean, type one diabetes is considered rare, isn't it?

Jennifer Smith, CDE 7:03
I think when you consider the or compare to type two diabetes, type one is the lesser right. Yeah.

Scott Benner 7:12
Well, I mean, I kind of mean, compared to everything else. They're seeing, like more than that, like quacks like a duck situation again, sure, like colds,

Jennifer Smith, CDE 7:20
you're going to have many more colds coming in than a child who comes in or an adult or anybody who comes in with symptoms, then oh, gosh, this must be type one. So yes, it's, it's more you're looking for something that's more frequently seen. Yeah, then looking for something that I guess rare would be the right word in this context to use

Scott Benner 7:41
Mayo Clinic. This year, it's estimated that about 1.2 5 million Americans live with type one diabetes. So you know, I'm just gonna do a real quick how many Americans are there? Yeah, there's 340 million. So that's not a lot. Can if that makes that makes it rare. And so I guess my point is, is that if this is the first time for you, as a doctor seeing this, I can see it getting right past you. What I don't understand is after you've seen it once, or twice, why we don't adjust why you could miss it. Yeah, yeah. Like, let's start like remembering what what happened learn from learn from the past. Because here's something is from a listener, right? I wish our regular pediatrician would have known that it was okay to just do some blood work. So the pediatrician was so scared to just draw blood because they thought it was going to scare the kid sure that they just kept throwing different medications and different things that the kid try this do that. And meanwhile, further and further into DKA. Sure. I think that what to me, what that points out, is that you can't allow yourself to be dismissed. And on the physician side, dismissing people, I think is, is dangerous, like, you know, like it, you have to assume that people know what's going on with them better than you do, even if they're not,

Jennifer Smith, CDE 9:06
even if they can't give you a diagnosis that you can't they can't name a diet diagnosis, right? They know what they've been seeing or feeling or they know that, you know, little Johnny has looked and acted this way for the past eight years, and is no longer doing that, right. Things have changed, doesn't want to play is now wetting the bed again, and wasn't before all of these things. Are there red lights in our world of knowledgeable like diabetes, because we've been living with it. But for the newbie, again, and or the new Doctor Who, like you said, maybe it's somebody who's fresh into their first job, you know, in a pediatric office or in a general practice or whatever. And then it might look rare. Yeah.

Scott Benner 9:53
So yeah, it happens to adults just the same way it happens to kids, by the way, and so there's this balance if you're the physician, and I can See where it would be difficult? I need to listen to what they're saying. But what if what they're saying doesn't make any sense at all? If I said I've been urinating a lot, right? That would be me indicating that I think I'm urinating more than I normally do. Correct. But But if the doctor says, Hey, how much do you urinate? And they tell you a number that seems high to you, but it's not high to them. You have to push back and say, That doesn't seem right. We should look into that. Like there's a balancing act within every question. Dexcom g7 offers an easier way to manage diabetes without finger sticks. It is a simple CGM system that delivers real time glucose numbers to your smartphone, your smartwatch. And it effortlessly allows you to see your glucose levels and where they're headed. My daughter is wearing a Dexcom g7 Right now, and I can't recommend it enough. Whether you have commercial insurance, Medicare coverage, or no CGM coverage at all Dexcom can help you go to my link dexcom.com/juicebox. And look for that button that says Get a free benefits check. That'll get you going with Dexcom. When you're there, check out the Dexcom clarity app, where the follow Did you know that people can follow your Dexcom up to 10 people can follow you. Right now I'm following my daughter, but my wife is also following her. Her roommates at school are following her. So I guess Arden is being followed right now by five people who are concerned for her health and welfare. And you can do the same thing. School Nurses, your neighbor, people in your family, everyone can have access to that information, if you want them to have it. Or if you're an adult, and you don't want anyone to know, you don't have to share with anybody, it's completely up to you. dexcom.com/juice box links in the show notes links at juicebox podcast.com. And when you use my link to learn about Dexcom you're supporting the podcast. Because there's, there's what's going on, there's what the person believes is going on, it's what they don't understand is going on, uh, you know, it's there's a lot happening, and it's your job to dig through it. But the real concern here is emergent, really, if you don't figure it out quickly enough. Now we're DKA. Correct. And that puts you down a different path. Right? You know, like, again, I've spoken to so many people, people who catch something early, where they're just like, I don't know, if something didn't seem right, I went to the doctor, and he was a great doctor, and he figured it out. And I went home and I didn't have to go to the hospital. That whole path changes their life. And I know that's hard to imagine, but it really does.

Jennifer Smith, CDE 12:37
And it makes it I mean, what you're kind of alluding to is a very emergent scary scenario of diagnosis, versus a scenario of, hey, I had these symptoms, it seems kind of weird, I'm feeling kind of off but not like terrible at this point. Again, at that point, your ability to provide a little bit more in depth, searching for them. And in depth asking of what what they feel like has changed. Again, this is where addressing the person as a person, not just as a case to evaluate becomes really important. Because as you said, if you're going to the bathroom a lot, you have to say, this is really a lot for me. Like I don't I don't get up overnight. I don't you know, have to get up in between meetings at work. I you know, all these things are very different from the clinical side, then they have to, they have to remember to take that the step further and say, Well, you know what, I don't know. But we could easily do this test this test in this test. And I think that's where when people say things who are already in the group of people who have diabetes, they say, Well, why didn't they just do? Why didn't they just do this? And you the new person is like, I don't know what to ask for? Clearly, I'm coming to the doctor, they should know what to do for me. Why didn't they do it? Yeah. And, again, that's where from the clinical standpoint, I think, in general, there maybe need to be some guidelines that are changed a bit. That's, you know,

Scott Benner 14:11
I don't know what that's supposed to be. But I think that from practice, to practice and doctor to doctor, you should be able to figure it out on your own. You know, like, have a meeting, sit down and say, hey, the last couple of times we've diagnosed a person with type one, it's not gone well, and here's why and right, you know, what could we have done? So many people get sent home with insulin, and told to go find an endocrinologist. But now they have this insulin, they don't know how to use it. And it's, they're scared of it. And then the doctor will say something like, you know, listen, high blood sugars are the leading cause of blah, blah, blah. So now you're you've just been diagnosed with something, someone who says something very scary to you. Then they've given you insulin. If you're lucky. They've told you the insulin is dangerous. Some of them don't do that. I don't know if it's because they don't know or they don't want to scare You, but now you've given them these competing problems. Insulin makes your blood sugar low, and could kill you right now. And high blood sugar is gonna kill you later. And then you get sent home with that paradox. And what are you supposed to do with that with no knowledge? It's, you know, it's, if you're doing that to somebody, that's terrible. And it happens, every single I think it happens every hour of every day, from the people I talked to. And this woman asks me, how did my general practitioner not see how upsetting it was to tell me for 15 minutes? How bad high blood sugars are for me, and then they handed me insulin and said, keep your blood sugar high until you can see an endo. Right? Yeah, right. I mean, what, what is she supposed to do with that? Exactly, except go home and be out of her mind word.

Jennifer Smith, CDE 15:49
Right? Yeah. And Or try to. And hopefully, the goal is with a diagnosis that you do get a new, essentially, kind of introduction, kind of a nice handoff, if you will, to the knowledgeable clinician, who will be your next go to in the dive into the education. But, again, a very good baseline of each and every practitioner, who is just a general medicine practitioner, should have the same guideline of if these symptoms, you know, are presented to you. And I mean, the symptoms aren't weird symptoms, no peeing a lot, you're losing weight, you can't get enough to drink. I mean, those I mean, as classic symptoms, the grand majority of people who come in complaining of something, those are going to be the top three, I think, classic symptoms. So you would think that in learning about all the different types of disorders or you know, diseases in the body in general school, you would think that he would remember some of that and be like, Oh, well, an easy thing that we could do is, we could do you know, a urinalysis, you can look for glucose, we could look for all these things, we can look for ketones, we could also do a finger stick. Those are some pretty simple things that should be I think, on a broader scale of this, they should be something that is done when you present with symptoms that could possibly be diabetes. And if you

Scott Benner 17:28
don't, if I think is a regular practitioner, if you if you're not aware of this, could you not reach out to a local organization, hospital endocrinologist and say, Look, we'd like to have, you know, a checklist for ourselves. Yes, could you help us put that together, and we'd like to have something to send people home with because we know it can be difficult to get an end dose appointment, like just some learning materials that they could go home with or a link that we could actually, it makes more sense than handing them a learning material, you should hand them a link, you know, whatever your practice name is slash type one, and that you could actually keep updated and you know, turn it into a resource for them and explain the questions that they're obviously going to have in the beginning. Because all this all this does, by the way, is you send people to the internet, and then it's luck of the draw if they find good or bad information, correct. And then you yell at them later for getting their information from the internet so you don't help them they go to the internet, then you tell them you know you're not a doctor. You shouldn't be on that line. Well who was going to help me if you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, G vo Capo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you store G vo Capo pen and how to use it. They need to know how to use G vo Capo pen before an emergency situation happens. Learn more about why G vo Capo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys caught a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma visit G voc glucagon.com/risk For safety information.

Jennifer Smith, CDE 19:42
You sent me home with this information about and or maybe they even as especially as an adult maybe got sent home without any insulin right because the doctor wasn't sure. And while the test results were more conclusive towards this being diabetic. Eat is the idea that they could get in the next day with someone who could educate them. And give them a little bit more. I mean, I've seen so many different diagnosis stories go so many different ways. Yeah,

Scott Benner 20:14
no, but isn't there, there has to be a fairly centralized way to keep most people from being in a bad situation, we're not going to stop everybody from having a problem, right? But it can't be that crazy of a problem. I feel like if I put you in I and a couple of other people in a room for four hours, we could come up with that list, and a way to implement it, it just it. But I can't do that for you. And if we sat here and did it, by the way, you wouldn't listen to it, you'd be like I heard on a podcast ridiculous. But you know, you have to go do that yourself. Because, again, the problem you're not seeing as the practitioner is the thing that only people like Jenny and I and people have lived through it can see that there are these multitude of paths that you can lead people down. And I'm not kidding, you can destroy their lives, like psychologically, medically, with their relationships with their, like their mental health, it's not an overblown thing to say that what happens to them in the beginning, goes a long way into how they live their life after that, and you're, you're the ground zero for this, you know,

Jennifer Smith, CDE 21:21
depending on who they get connected with, after their visit with you, after their diagnosis with you. It could completely turn around if they find somebody who is really good in is a great educator or has a great, you know, diabetes practice, and they get in sooner than later to clear up. I don't want to say it's misinformation, I think it's misguided information about what to do. And I think, as you said before, the initial diagnosis in a general practice is going to be to some degree, it seems often to be fear based. Right? It's, well, this is your diagnosis, this is what we've figured out. These are why you're having these symptoms, and you're going to have to start injecting insulin, and insulin is going to do this. And if you don't take it, your blood sugars are going to be high, like you said, or if you do take it, you have to be concerned that you don't take too much, or you're going to end up with low blood sugars. And they may or may not tell you about symptoms, honestly, yeah. Right. They may or may not tell you what you might feel like when that happens. There's a cascade effect from that initial diagnosis. And you can send somebody home in just a whirl of,

Scott Benner 22:42
there's a difference between throwing me in a giant, never ending warehouse with no lights on and telling me the answers in here somewhere. And giving me a flashlight. Like, I'm not telling you, you have to show me exactly where it is. I'm saying, you know, say the rest of the sentence, which is a phrase, I think about all the time, like don't just say, hey, low blood sugars are dangerous, like keep talking, complete it, why are they dangerous? In what scenarios might I find myself in this situation. And if you as the practitioner, don't know the answers to the rest of the sentence, you need to educate yourself. Because that's just you don't know enough to give this information to somebody, you know, you were just talking about, like a low blood sugar. And I think about all the time, how many people are probably told, for instance, chickens free, like there's no carbs in it chickens free, right? But protein gets broken down it gets, it gets stored as glucose that can make your blood sugar rise, sometimes 90 minutes after your meal. In the beginning, these people are probably honeymooning, it's probably not that much of an impact. It's possible that you don't have their insulin right. And so you're not noticing it because their Basal is too strong or something like that. Or by the way, you don't have their insulin too strong. You have a two week and they're seeing these weird spikes all over the place. And then you start turning knobs, you don't know what the hell you're doing. And that right there. That's it. That's the beginning of the end. Like once you start chasing blood sugars around it, you don't know why the variables do what they do. When that happens, you are on an hour, day, week, month, year, lifetime long struggle. And that's it

Jennifer Smith, CDE 24:22
from the practitioner standpoint. If that's the road of navigation that you're leading people with, they will be the ones who are always tied to coming in and asking you to make the adjustments. Right. And if you don't know as you said, if you don't know the knobs to turn or which one to turn to impact what you see happening, nor do you likely know how to interpret the data. That should teach you how to turn the knobs one way or another. Then they are there seeing your adjustments. One way or or another, and those adjustments are likely not teaching them the right things to do when they go home. Because while their visits with you might be every three months, four months, every six months or whatnot, in between that person at home has diabetes every second of every single day. And they need to know how to turn the knobs. So if you're turning them one way, and adjusting in a way, that's not good for them to learn, then it's gonna get more fuddled up in between, as they think that they will, I can adjust it that that I saw the doctor do this, yeah, I should try to adjust it this way. Or I saw the doctor do this or told me to that it looks like this is what we need to do. So in between those visits, where they may not be connecting with you via you know, electronic record or even via phone, they may try, I will tell you firsthand that people with diabetes, want to try to navigate? Well, they want to try to do the best. And if the best is the knowledge that you've given them, and it may not be 100%. Correct, then you can expect their management to be I

Scott Benner 26:18
mean, in honesty, kind of your whole like career is getting people after they've been funneled up, which I've never heard, but let's just keep going. I like that. I love it. I'm going with I'm using it again. And so you see this every day? And and be honest, how busy are you? I am very busy. If there were 10 of you, would you still be this busy?

Jennifer Smith, CDE 26:40
If there were 10 of me, I would still be this busy. I mean, our office has a number of clinicians who all have the knowledge base that I do. And we are all very busy. So

Scott Benner 26:51
yeah, my point is, is that too many people get put on the wrong path. Correct. And the people who are reaching you or are, you know, more upwardly mobile people that can that can afford this, like, can even afford the time to sit down and think I don't know what I'm doing. I gotta go find somebody who knows what I'm doing. You know, I gotta not worry if it's an insurance thing. Now I'm I know I'm in I'm in real trouble. Everyone's in that situation. The minute they're diagnosed with diabetes? Yes, they just are. I don't know how often I say it. I was so bad at taking care of my daughter. In the beginning. I didn't know what I was doing. All I had and we went to a and I hate saying this. But we went to a prominent Children's Hospital in the East Coast, that I think most people would say this is amazing. And again, it was it was 18. I don't know how long it was, like 15 years ago, I guess. But it was before all this technology and everything. But it doesn't seem to matter now, because the technology is here. And still nobody tells anybody how to use anything. Right? And I can't tell if it's because you don't know, where you don't want to be involved. Like, like, I can't figure out what it is like, is it liability? Or is it you just don't understand.

Jennifer Smith, CDE 28:01
So what was it from your, from your perspective of diagnosis again, being years ago? And yes, things are very, they're very different technology wise right now. But when Arden was diagnosed, what was the difference between that initial diagnostic information that you are given? And how soon after, were you handed off to a team that up to the level of understanding so that you felt like you could take her home and at least have an idea?

Scott Benner 28:32
I mean, keeping in mind that Arden was two and right? We were young girls. I mean we were given syringes and insulin vials and a freestyle meter and test strips. And they taught us how to do the math for insulin to carb ratio for MDI. And that was it.

Jennifer Smith, CDE 28:54
And that was with though a specialist right, that was with a peds Endo? Yeah, we

Scott Benner 28:59
were on vacation. And we were lucky enough to find a children's hospital on vacation that had a dedicated peds, endo diabetes wing, like a real another great place that as far as you know, people would say, I didn't know what I was doing at all. Like, like not at all. I mean, I think Arden had a seizure in the first six months, because we counted the carbs and gave her the insulin. And it was a slower, it was a slower digesting, like like food. So the blood sugar the the insulin meter really low. There was an initial spike, but the initial spike went away. It was like simple sugar and then I'll hit later with a with a different glycemic impact. And she, you know, we got her out of it with glucose gel, but looking back on the person I was then I did not know what happened. Right? I had no idea what happened. I thought, Oh, my daughter's gonna have seizures all her whole life. Like this is the way that it goes. This is what this is right? and you go to the doctor doesn't say anything. No, listen, I'm just going to be honest with you. I have figured this out myself, right? That's why the podcast is so colloquial a blue collar or like simplistic, because I don't have any big words for the things I learned. Like no one told me about, like, no one ever said glycemic index to me. And if they did, I was like, that seems like too much. And I didn't listen. Right? Like, it's like, that's a lot of words. What I need you to tell me is that some foods hit harder than other foods and some foods that quicker than other foods like that, I would have been able to wrap my head around, right? Yeah, honestly, it was depressing, and scary, and overwhelming. And I started to write a blog about it. And I got to the point where I thought, Oh, I'm just writing what everyone else is writing. And so because there were a lot of diabetes blogs back in the day, like 1000s of them, and I thought, I'm wasting my time saying what everybody else is saying. And then I thought, I'm just going to, like, dig deeper into this. And I started off by asking, Arden CDE, I know I've said this before, but here I asked her, I said, if I give you a magic wand, what would you make people with diabetes do if you can make them do one thing. And she said, I'd make them not be afraid of insulin. And at the time, I didn't think what I'm thinking now, which is, oh, well, you probably should have explained it to them then. And maybe they wouldn't be so afraid of it. But I took her thought that she sees a lot of people afraid of insulin. And I just started doing the work on that. And I dug through that made myself not afraid of insulin, it took me a year of like writing about it and talking to people about it and having conversations with people. And then I think the next thing that happened was Dexcom became available. And that opened up my understanding of what was happening. And then I was able to sort of apply my feelings, that information. And then we started having good experiences. And I'm like, Oh, this worked. And then I just started chasing things that worked. Yeah. And then you'd go back to the doctor, and her agency would be coming down. And they'd say, What are you doing? Is she having a lot of lows? And I'm like, wait, what, that's when I realized they expected her a one C to be eight. And that it was now seven, going into the sixes. They thought I was crashing her blood sugar all over the place, because they can't even imagine that someone could manage a blood sugar in the sexes. Sure. That was 15 years ago, right? You know, like so. And I understand how old thoughts impact now. But now it's not then anymore,

Jennifer Smith, CDE 32:37
right? Because we have the amount of technology that we have, right? We should aim for better. And we should teach, we should be able to teach people that better is possible in a safe way, right? And we're not aiming for blood sugars to sit at 60 all the time, just to enable a blood sugar and an average that looks you know, like you're in the range of those without diabetes. I think you're right about the old school thought still really being a piece of it. I mean, if you being who you are now, and looking back on who you were without the knowledge level that you had,

Scott Benner 33:17
what did I need? Right? What

Jennifer Smith, CDE 33:20
did you need? What did the doctors like? If I Was Your clinician? At that point? What would you have been like, Hey, I don't get this, or what should I have told you that would have made you I mean, and also what if you hadn't been on vacation? Great that you had access to a facility that actually had good people who were trying to give you more information? But what if not, I mean, what if you would have just been sent home with? Right? Yeah.

Scott Benner 33:47
Oh, please, I don't know that I would have been that much different. Also, the internet wasn't really a thing, then. No, the way it is now. We have the ability to communicate better now. True, and to get information to people quickly, digest doubly. I mean, listen, if they handed it was that pink panther book? Is that what that was? I

Jennifer Smith, CDE 34:05
have one, I still have mine. Sure. I

Scott Benner 34:07
think we just think we just are hours away. So I get if I'm a doctor, I hand somebody this big book. My first thought is they're not going to read this. And you know, like so then you can easily write them off. Well, they don't want to take responsibility for their care. I mean, come on, no one wants to read that stupid book. Like it. Just it. I get that that's what there was back then. But it's not like that now, and we still treat people like it is like that's the thing I never understand.

Jennifer Smith, CDE 34:36
And I think there's something important in there to remember, if you are the clinician, what, what you say? And even just the base diagnosis, you have type one diabetes, right? The good majority of people as I hear so many times when I talk to somebody who's new, is right away upon diagnosis. The caregiver or they themselves are online right away. What is this? What's type one diabetes, and you're brought into this gigantic room of information with so many different files that you could pull to get the information from. So as as the clinical person diagnosing, I think it's really important to provide some good guidelines of the right places for education, because people will search online. Dr. Google is

Scott Benner 35:33
Yeah, so really how it works. Now, also, I will tell you this. I've given a lot of thought to this. You can't dumb things down. No, you can communicate them in a way that a lot of people can understand. But you can't dumb things down. Everyone deserves the knowledge. Right? Correct. You shouldn't assess someone because if you would have assessed me on the first day, I was crying in Arden's room, while they were trying to teach me how to do the math for her insulin to carb ratio. Like I was like, it hit me all at once. Oh, I'm a stay at home dad. My wife is gonna go back to work this two year old kid. Oh, my God, this is me. I'm in charge. Overwhelming, right? Yeah. So I cried. The nurse left because Kelly said, I think maybe he needs a minute. They never came back and tried to teach it to me again. I guarantee you, they wrote me off. They're like, alright, that one doesn't get it. It was probably that simple. You can't write people off, you have to give them the information enough that at least it sparks their mind later when they aren't crying. And they can think a little bit that this person here says I wish they didn't dumb things down. I need support, you should show me where there's community around this. I'd like a brief explanation of type one diabetes, it was very overwhelming. It sent me home to watch video after video and I got drugged down a rabbit hole. Right? I needed Quickstart information. That I think is the big deal. Right? I wish they would have told us. So there's this phrase that gets used in the podcast? I don't know if I say it as much anymore. But I refer to what a lot of doctors do is they give you don't die advice. It's enough. You know what I mean? Yeah, it's enough that you won't die, but you're not necessarily going to live healthy with it. Right.

Jennifer Smith, CDE 37:09
And that's more general to it is it's more, I'm going to send you home with this. It is it's it's don't die advice. It's take this do this at this time, and then connect with this person, because they're going to they're going to dig into this for you. But again, when that ends up happening, or between that happening, and seeing somebody who can really help you understand. And at a time when you're not crying anymore about this, yeah. In between that time, you're not. You're not sitting at home not looking up information. So what happens between diagnosis and formal education, if we call it that, that educator now has a load of stuff to clean up from wherever that person went home and looked up information? Which may not be correct, right?

Scott Benner 38:00
I can tell you Look, I know at this point, everybody's pretty like internet savvy at this point. So I think doctors can understand this next point. My Facebook group adds 150 new people. Do you know how long it takes to put 150 new people in the group? A couple of days, four days? Yeah. Every day. It's a three. But you heard in 50 new people show up. I have my 10,000 hours that watching them. Okay, I know the storm that they're living in, right. And they are so confused. And by now they've been online, they have absolutely found somebody who's telling them don't eat a carbohydrate ever. There's absolutely they found somebody that tells them that insulin is bad for them. They've absolutely found somebody that told them that they can reverse this whole thing. This is the myriad of different information they're getting over and over and over again. I see this happening. Please listen to me. Not once in a while. All the constantly. So you're sending people out into the world. Like, look, not even everyone's going to agree this podcast is valuable. Right now I see how it helps people and at the at the scope and scale that it does. So I know. But you can't even get everyone to agree about that. So they're out in the world looking for what ever has a good like, return like when they Google something. And now they've got 16 different perspectives. They are twisting in the wind at this point. They're scared they think they're going to kill themselves. They think they're going to kill their kid. And I want to read with this woman said she I wish they told us more than don't die advice. That advice that we got a diagnosis from them. We haven't gotten any new information since that quick class we had at the hospital discharge. I've never had any advice about improving time and range. Nothing about Pre-Bolus Sing no one has ever mentioned Pre-Bolus seem to me nothing about how fat and protein affect blood sugar, no guidance on how to exercise or play sports. No guidance on how to adjust insulin to carb ratios, how to adjust long acting insulin. Honestly, I am fairly sure that this don't die plan is the standard of care. And this is forever how they want it to be. And

Jennifer Smith, CDE 40:10
the unfortunate thing about that is what this person is getting to is the in depth what should be being covered in education, This by no means should be coming from a primary care, right? It should not because they don't, there's not a bandwidth there for it at all, unless you found a general practitioner, you know, who is a specialty in diabetes? And then many times it's even just a specialty in type two management, likely not type one. But

Scott Benner 40:39
yeah, but my point is, this is what happened to her. Correct, right. So she went to the hospital even and didn't get anything. This is your responsibility, if you're the doctor like this lady situation, is because of the lack of guidance that she got at the beginning. That's it. So you can say, Oh, this is her endos problem, or the hospital failed her. You can say whatever you want. This is still who she is now. So you know, and she's raising a child with diabetes, that kid is going to his? Well, by the way, nothing bad's gonna happen to this kid, because he found a podcast, like his Mommy found a podcast. So now she understands all these things. But you could. I don't want to out myself here, Jenny. The podcast isn't really that in depth. Like it's it's understanding how to use insulin, understanding the impacts of foods. That's it. Right? You could explain that to somebody, listen, I can explain it to them. Use, you must be smarter than me, you're a doctor, you absolutely could do it. I trust me, I couldn't even barely graduate from high school. So like, I know, you can do this, I figured it out. I figured that out. Because I had to. You need to put yourself in a situation where you feel like you have to, like I have to learn how to talk to these people about these things. Because if I don't, here's what happens next.

Jennifer Smith, CDE 42:01
And especially because you've decided to specialize, you've decided to specialize in something that does encompass diabetes, unless you really are only a thyroid endocrinologist, you're really only a hormone based right then great, you're probably not even taking patients who have diabetes, right? But if you have gone that route, then you're 100% Correct. These are the pieces that should be being discussed. And there should be there should be, I guess, some things that are asked of each person with diabetes in terms of their understanding that then you can dig in with them and say, Okay, well, we need to start here, you want to get here. Let's start here, so that I can get you to playing three hours of soccer on a Saturday, right? The way that you want. I

Scott Benner 42:51
mean, I'll take it further. If you're a GP, type two diabetes is everywhere. You don't when an adult is diagnosed, please, this person asks, please check them for anybody's before telling them they have type two diabetes, you have any idea how many type ones you're sending home on Metformin. And they're not dying through good luck, because they're still in their honeymoon yet, and we're getting very sick because you're like, oh, diabetes, that can't be that's type two, cuz you're fat, or cuz you're old, or whatever the health thing you think that isn't accurate? And, you know, type ones, have this happens to them constantly. Go pick through the podcast, find people living with that with type one diabetes, for years, on the brink of death. And it's because somebody told him they had type two never checked, or who have

Jennifer Smith, CDE 43:39
literally done every single one of the lifestyle changes that you've told them to do. Type Two often gets, you know, I'm gonna give you this medication and oral medication. Let's say you mentioned Metformin. Sure, it might be Metformin, then you're, let's try to get some exercise every day. And let's try to watch what you're eating. Some people will especially again, with the information now online, they will take that to the level of they're now eating lettuce and their blood sugar on you know, they're doing their finger sticks. And it might still be 200 or 300. In the thinking, I can't eat less. I can't walk anymore. My dog doesn't want to walk with me because I walk him eight times a day, right? I mean, and then they go back and they say, I'm doing what you asked me to do. And it's not, it's not better. So at that point, you look and you say, Well, gosh, maybe we should do some testing.

Scott Benner 44:37
And if you think Jenny's just making that up as an example out of her head, I've been told that story 50 times. It's incredibly common. This person here says please do not let patients leave your office with insulin and zero education regarding lows Because managing lows without causing fear is really important and it requires a playbook like you don't Just get to do it on like, oh, 15 carbs, 15 minutes. Like, if you're still saying that shame on you, first of all, here's what I think there are, however many people being diagnosed today with type one or type two diabetes, even I mean, we can lump them together to be perfectly honest with you. Each one of those people, if you don't help them has to learn it all by themselves, millions of people having to learn this thing that if you just learned, you could explain to them, right.

Jennifer Smith, CDE 45:26
And if you come back at them, and you say they bring you some results, they bring you some information. And they say, Well, I went online, and I looked up this information, and now look what I've achieved. And then the turnaround ends up being where did you get that information? You got it online? Or what kind of, you know, they're not looking at even what the person actually achieved? They're just looking at the fact that well, this person got it out of like, you know, the back end of somebody's blog about something, something diabetes related. And this person has no information about where that information came from. So they blame you, instead of just saying, Well, gosh, where did you get this? And this looks like you're really what what has made the difference? Because you know what, you as a clinician, you might actually learn something.

Scott Benner 46:13
This by the way, you don't know because you all don't know Jenny as well, as I do in public. This is as angry as Jenny gets, but she's mad. I'll just be mad for her. Yeah, I'll be mad for her. They just made me laugh. They're so mad.

Jennifer Smith, CDE 46:30
Because my my angry doesn't. I don't know that you've ever seen. I tell my kids when I'm angry about something. I'm like, you don't want the dragon lady. And then they're like, Okay, Mom, you're right, we don't

Scott Benner 46:41
make your point one more time very succinctly in one sentence. My

Jennifer Smith, CDE 46:45
point is to take the success of somebody that has come to you and look at where and what they've done. Don't just blame them for getting their information from someplace else. You didn't supply it, they went looking, yep, they have found some success. Help them keep that going.

Scott Benner 47:08
Right. And the reason why that creates anger in genuine in me as well as because I get those people's emails. And those people come to me to tell me, I listened to the podcast, I got my time and range down, my agency started to fall, I was so excited. And then I went to the doctor, they yelled at me for 15 minutes and changed all my settings so that my blood sugars would be higher. And these are not people who walked in there with like 70 blood sugars all day long. And they were walking all precipice between life and death. Like it wasn't it's not that it's just they learned how to Bolus for their food. Right? And then they they understood, I don't know, like simple things that you could understand, too. I mean, you're a freaking doctor, like, learn it or, or leave them alone. Like, you know what I mean? Like, if they're doing well, don't get in their way, for God's sakes, you've gotten in their way twice already now. Like, like, you can do it again, you know, or

Jennifer Smith, CDE 48:00
with their success, say, Well, what are we working on next? And your your job as the person that they're coming to, to share this really awesome, exciting success with is great. How can we move on? Or hey, ask, what did you get this information from? Yeah, maybe I should take a listen. Maybe I should, you know, check into the clinician that you talked with outside of my practice, or whatever, so that you now have more to work with other people who are going to come in, you could get them started in a really good place to begin with.

Scott Benner 48:36
It occurs to me that you have to put your ego aside in that moment. Yeah. And just want to you need to want better for them. Because what's gonna happen next, when someone tells you, I don't know, I listen to this guy. He's got a podcast. Sometimes there's this lady that comes on, she seems like she's from Canada, I can't tell whether accent and like, you know, like, and now they were talking about this thing. Because Jenny, you and I think that people hear every word and remember it like the Torah, which is not how it works, right? Like we have these conversations, and they pick things out of them. Correct. You might have to go listen to that conversation to and trust me, if you feel like well, I'm a doctor, I don't need to do that, then you're never going to help those people. Then I'm telling you that I've spoken to them over and over and over again. So as Jenny, and they are all they're struggling significantly in their lives, and you're not helping them. So

Jennifer Smith, CDE 49:28
and I think that from a clinical perspective, too, you have to you have to find a comfort level and working as a team. I mean, there's a saying that's been there forever, right? It takes a village to raise a child, right? It takes a really significant good care team to navigate managing life with diabetes. A lot of the people that come in to our practice, you know that work with me or one of the other clinicians in the practice. We are very happy in fact When there are other clinical participants in that, you know, some people come to us and they're like, We have a phenomenal endocrine team. We love them. But this is the piece that I'm missing. And they haven't gotten as in depth about it, as I think that you can, can you help me with this? Can you help me understand, but I'm getting this, this and this from my tear team. So I don't need that from you. Fantastic. From a clinical perspective, you have to be able to say, You know what, I don't know everything, because I'm very happy myself to say, you know, what, I don't know anything, everything. If there's somebody that comes to us and is like, hey, I want to work with Jenny. And I'm like, that's not my wheelhouse, though, you would be much better working with this person. That's the same approach that I have with other clinicians. I'm like, You know what, you take care of this, and I've got this.

Scott Benner 50:50
So I had to make this leap. I'm just gonna be completely honest. I know. I've always known that community around diabetes was important. I never knew exactly how important it was. I heard other people say that it was important. One day, I got so much pressure from listeners to the podcast about making a Facebook group that I just did it. And I want you to know, it was not a thing I was excited about at the time. I thought, Oh, God, I'm gonna have to moderate a Facebook group. I pull Jesus, that sounds terrible. But here I am. They asked for it. I did it right. Now, that's, I think three years ago, now, maybe a little less. There are now over 42,000 people in the Facebook group. In the beginning, I it was me going, that sounds like this. Show me your graph, I think. I think that like, you know, because doctors frequently mess things up. Even graph reading. Here's the thing you guys do all the time, people come in with a low, and you take away their Basal. Like that somehow is the fix for a low blood sugar instead of looking and saying, Hey, you had a meal here, right? And then you spiked up and crashed down? When did you give yourself the insulin. And if you by the way, if I'm now talking, and you don't understand what I'm saying, You have no chance of helping people with diabetes, okay? Because where you time that meal, insulin stops that spike from happening. And more importantly, it uses up the meal insulin to combat the carbohydrates. So the meal insulins not leftover to cause a low later, if you don't know that you are doing people a disservice. So anyway, I used to have to go through over and over and over again, like I said, I learned once like so I could tell other people. At some point, I thought I can't do this. Like I cannot keep up with us. And then I realized I didn't have to. Because so many other people heard me say it. They were helping other people. And before I knew it, I was watching people respond thinking, holy, they're using my words, like they're talking to that person the way I spoke to them. It's a beautiful moment, a beautiful moment, when you see that you you put something out into the world. And it's it's being redistributed by other people. So I understand if you're the doctor, you can't say these things a million times a day, there's not even enough time. But you can't just make that be the the end of it. Like you have to find a place to send them off to I'm not saying your doctor's office should start a Facebook group because the truth is mine only accomplished this level of proficiency for people because it's so big and far reaching. Because when someone asks a question, there's at least three or four or five people in there to answer,

Jennifer Smith, CDE 53:37
you know, and what do you have backing it up? There are episodes backing it up, to be able to point people to for a broader understanding or like you said, maybe some people take one snippet out of one whole episode. And that's what really made the difference for them. And in that same episode, there might be one or two other snippets that really hit or resonate with another person. They're both improving, but because they heard the information that they needed, right about the same topic.

Scott Benner 54:08
Yeah. So what Jenny's kind of alluding to in the first part there is that if someone asks a specific question, at some point, I have moderators or I will jump in and say, here's a link to an episode you should listen to to get more information about this. Now you think, Oh, I'm only helping one person. You're helping everybody who read that thread. And it's way more people than likes and hearts would indicate to you. So that's another thing you don't know is that you think oh, only one person asked this question and only five people got attracted to answering it. This is a six person situation. Now what you can see is that this thing's been through 1000s and 1000s of people's like feeds and they're taking time to look at it, which means a lot of people have those questions. They're too scared to even ask them out loud, right? So if they won't ask them online, what do you think they're going to do when they get in the doctor's office

Jennifer Smith, CDE 54:54
or they don't know how to ask ask them. They don't exactly quite know what the issue is. They have have maybe like a subconscious level of considering, but they don't know how to voice it. They don't know how to bring it up and they need somebody to sit down. And as you said before that one example of, oh, now you're low, I think what I've seen so many times over and over is that you go into a visit, all prepared as the person with diabetes, you brought in all of your documentation, you brought in all of your logs, and, you know, the printouts from let's say, you're using a continuous monitor, whatever it is. And clinically, you may sit down as, as, you know, the doctor, and you might say, Oh, what happened here? You can you pinpoint one, most often it's lows, or it's the extreme highs, what happened here, and the person with diabetes is honestly thinking, Well, I don't know. I was like, four weeks ago, and I've got three kids, and I truck them all over the sick. I don't know what happened at that point in time as a clinician, it's the bigger picture of a trend. You're not looking to pick apart the data, and picking it apart also makes the person with diabetes feel judged.

Scott Benner 56:09
don't frustrate them and judge them. Like that's correct. What what happened here means What did you do wrong? Right. And by the way, if I knew I would stop doing it, because so like, now you're asking me the question, like you said, bring all these logs in, I did it. It's a pain in the ass. I brought you all this stuff. I handed it to you. And you sit. And instead of telling me, here's an answer, you said, what happened here? Are you kidding me? Like that's your plan. And by the way, if people come in the office and don't ask any questions, do not sit there smugly thinking, Oh, I'm so good at this. They don't have any questions. They don't know how to ask their question. They're embarrassed. They don't want to be judged again, you're an asshole. And you don't realize it, which happens. Sometimes some of you are assholes, and you yell at people and talk down to them, and then they don't come back. And then you think, Oh, they're non compliant. They're not non compliant. They don't want to be near you. Right. You know, like, that happens. I'm not saying everybody. But if you're wondering, does, it happens, you know? Yeah, it's, I

Jennifer Smith, CDE 57:10
mean, from the that standpoint, too, you know, remembering that the person coming into your office is, they're a human, they're a person, they are just like you when you go home, you've got a life right outside of your office, when they come in. The first things should really be more personal questions, you know, how are you doing? How are things going? You know, what are your concerns today? What? What is on your list of what's working really well, please tell me or what's not? What What can I help you with today? Yeah, right, because it opens a door of personal connection. That isn't white coat.

Scott Benner 57:53
This is just very important. And, you know, I watched my mom live with cancer for a couple of years. And the truth is, every day of her life was about that cancer, like a lot of other things get swept under the rug, right? diabetes isn't like that. Like those, these people are not at home, like 24/7, like mired down, like they're trying to continue living, they think they either believe there's a way out of this. And they're looking for it in the time they have available to them, or the situation and the lack of information has beaten them into believing that they get a lesser life than everybody else. And they're just going to push on. Right? And I'm just going to live my lesser life now. That's not true. Right? Like, I just, I mean, take it from me. You can. Jenny, I know you could do this too. And I know you're probably getting low on time. But if you put me in a room for one hour with a person who is newly diagnosed, I can put them on a good path. And then I could speak to them again a couple of times over the next six months, and they'd be okay. Right? If I could do that, and you can do that, then doctors can do that. Yeah. Don't tell me the system's wrong or you don't understand how many people I have to see or the insurance figure out something. Don't just say don't wash your hands up and go Oh, this isn't my fault that this is happening right? You might not be your fault but you're the last year what we have so

Jennifer Smith, CDE 59:18
right trying to get a connection and yeah, yeah,

Scott Benner 59:22
try harder. It would be nice anyway, I didn't expect to get upset but here we go. Thank you for doing this with me here welcome. Any doctor still listening to this episode right now that like those people yelled at me for a while.

Jennifer Smith, CDE 59:34
So well, they you know, I think in in a really big way. It's It's hard because you don't want to call out like as a listener if I was a doctor and I was hearing it I'd feel very like singled out but you have to have a wider view. It's not have to have a wide view and say, you know, but I'm not doing that you have to remember and say but you know what, I learned something. I could do this better. I could pass this on better, I could hand them off like a gentle handoff to another, another practitioner that can get them to help. The other thing I think I wish could be heard here is behind the scenes. What it really calls for is a very specific medical protocol of when you come in, this is the checkoff of what you do flu symptoms. You do a urinalysis, you do a finger stick, that's the protocol, you will do it whether the person is two minutes old, or you're they're 98 years old. This is the protocol that you will do. I think it begs a broader change to our medical system, for sure. It really does. Yeah,

Scott Benner 1:00:42
I mean, hearts and minds is only going to take you so far like the system has to, here's a good example, when the system gets in the way, not overblowing this a half a dozen times a year, I get contacted to come to a facility and explain how I talk to people about diabetes, to hospitals, to doctors offices to big practices, you know how many times I've actually done it? None? Never. Because by the time it goes up the chain, somebody squashes it.

Jennifer Smith, CDE 1:01:08
Somebody says no, yeah. And do you know, do you know why? I know, you know, I'm not a doctor. So they don't want me to have you have no initials behind your name. Right. So my

Scott Benner 1:01:17
point is, is that even? Yeah, and sometimes people get good ideas, and they are motivated, and they want to help people. And then the system squashes that, I understand that, I guess I don't know what to do with that. And that's why I'm hoping that just this conversation leaks into people's minds. So that at least what they have control over. Right, they can maybe make more purposeful decisions with

Jennifer Smith, CDE 1:01:41
Well, I think even if they wanted truly just the educational pieces that you've put together, I think, again, from a protocol standpoint, I mean, my like end all would be that they all just get a little handout pamphlet in every single medical practice that's like, hey, you know what, this is your new diagnosis. If you want the right place to look for information to begin with, because I know you're gonna go on whatever internet doctor visit, you know, a site you're looking at, this is the right place to find this, this and this bit of information. So

Scott Benner 1:02:15
when people come into that Facebook group, they answer a few questions. One of them is Where did you hear about this 40% of them from my doctor. So it is good. I mean, it is getting better, but it's just the ones that slipped through the cracks. I can't I can't state firmly enough, that the ones that slipped through the initial cracks very frequently don't get back out. Like that's, that's the part that I'm upset by. Like, if somebody's got to struggle for six months to figure out the truth. That's, I mean, not preferable, but okay. But like, there are so many people who just never leave or never look again, or they're disoriented or they're, they're overmatched or whatever. They don't have the time all the things we've mentioned, they never get out their whole life like this. So it doesn't need to be that way is my only point. No, I completely agree. Okay, thank you. I appreciate it. Absolutely. Talk to you next time. We'll try to have a more upbeat one next time. Thanks, bye

if you're enjoying the Grand Rounds series, good news, there's much more to come. Don't forget to share it with somebody who you think might also enjoy it. Even a doctor. A huge thank you to one of today's sponsors, G Vogue glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com Ford slash juicebox. You spell that? G VOKEGLUC. Ag o n.com. Forward slash juice box. A huge thanks to Dexcom for supporting the podcast and for sponsoring this episode dexcom.com/juice box go get yourself a Dexcom g7 right now using my link. A huge thanks to a longtime sponsor touched by type one please check them out on Facebook, Instagram, and at touched by type one.org. If you're looking to support an organization that's supporting people with type one diabetes, check out touched by type one. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome. Type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. The episode you just heard was professionally edited by wrong way recording. Wrong way record korting.com Thank you so much for listening I'll be back soon with another episode of The Juicebox Podcast.