#578 Allergic to Insulin Part II

November 16, 2021Scott Benner

Dr. Bonnie McCann-Crosby, MD is here to talk about a potential work around for severe insulin allergies.

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Scott Benner 0:00
Hello friends, welcome to episode 578 of the Juicebox Podcast.

You may remember episode 504 allergic to insulin where a young girl from cannula came on to talk about how she was really like viciously allergic to her fast acting insulin, her mealtime insulin. And we talked all about how she worked it out. Well, a little later, I heard from a doctor in Texas who had a patient who was also suffering from the same thing. And a lot has happened since I talked to that doctor, I'm going to tell you about it here. And she's going to tell you about what they did, and how they took care of the problem. It's kind of fascinating. You're gonna love it. And I think in a couple of months, I'm going to get this doctor's patient on to talk about what they learned, which is different than what the first person learned for Oh my Wait, do you hear? 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. We're becoming bold with insulin. Hey, so far this month, we've added like 140 people to the T one D exchange registry, have you taken the survey yet have to be a US citizen. But after that, it's T one D exchange.org. Forward slash juicebox take you less than 10 minutes. This episode of The Juicebox Podcast is sponsored by touched by type one, please go check them out at touched by type one.org or on Facebook, and Instagram. Today's show is also sponsored by the Dexcom G six continuous glucose monitor, you're going to want to go to dexcom.com forward slash juicebox to get started today. Head over there right now get the CGM technology that my daughter wears. It's absolutely amazing.

Bonnie M. McCann-Crosby, MD 2:03
Hi, I'm Bonnie McCann Crosby. I'm one of the pediatric endocrinologist at Texas Children's Hospital in Houston, Texas. Thanks for having

Scott Benner 2:12
me. No, thank you for doing this. I appreciate it very much. Let's see if I've got this right. I put up an episode with Stacia, right, and she's allergic to insulin. And I talked to her about like, you know, like, everything she went through, and it was really kind of fascinating. I didn't realize how impactful I mean, I guess I didn't even realize it could happen but but that she's allergic to this insulin couldn't use it had to get this specific kind of, I forget, like injection port or pump site or something like that from Germany, and they weren't gonna make them much longer and the insulins like $14,000 a year, and I think this is a pretty good encapsulation of that. That whole thing, but then I got an email from you. And I don't know how that happened. So you fill that part in for me?

Bonnie M. McCann-Crosby, MD 3:03
Yeah, no. Um, so I obviously see a lot of pediatric patients with type one and get to chatting with the parents, and a lot of them had mentioned your podcast and how they really enjoy it. And so I was like, well, I'll check out an episode. And the episode I first happened to listen to was the one with Sacha and the insulin allergy. And got me to thinking about other cases that I'd seen similarly, which is why I reached out to kind of get more information.

Scott Benner 3:36
Cool. So it is complete happenstance that, so I'm assuming that, you know, some of the people who listen to the show, they hockey a little bit about the podcast, right? And they're just, they, I'm assuming they say you got to listen like they, they give you the wholesale. And then finally you're like, I'm gonna listen. And then you land on an episode. Boom, out of the gate. And you're like, Oh, I've seen this before with some of my other patients.

Bonnie M. McCann-Crosby, MD 4:02
Yeah, it was. It was crazy. Actually. I was like, Wow, I can't I can't believe this is the episode first one I actually listened to.

Scott Benner 4:10
Did it make you wonder what secrets are in the other ones?

Bonnie M. McCann-Crosby, MD 4:14
It has? Definitely.

Scott Benner 4:17
So you listen to that. And you think you have current? I know we can't speak about your patients specifically. Although although it looks like maybe one of them might come on the show. But but so you had somebody who you were thinking up right when you saw this like somebody who you're treating currently,

Bonnie M. McCann-Crosby, MD 4:33
yeah, no, I and, you know, patients with similar reactions to Sasha significant allergic reactions, skin reactions, and things like that and just trying to think about other ways to to treat these patients and because this is very rare, and not a lot is known about what to do in these situations.

Scott Benner 4:57
So So highlighted for me A person who has this allergy injects the insulin what happens? Generally?

Bonnie M. McCann-Crosby, MD 5:04
Yeah, so I mean, in patients with these kind of allergies, you know, they can get significant like skin reactions where it's almost like major hives, you know, huge raised area, red on the skin. Extremely large, extremely painful. And, of course, you know, this is every time you inject, right, and so if you imagine, you know, if you're on multiple injections a day, every single time you give an injection, you've got these huge reactions, and they last for days. So this is not just, you know, it's it's done within a few minutes or an hour, it's it's days later still dealing with these consequences from each shot, so and incredibly painful, incredibly frustrating. And then, you know, what can happen is you're not getting absorption of the insulin, right. And so blood sugars are through the roof high difficult to control, increased risk of DKA, because you're not getting, you know, the life saving drug that you need to keep blood sugars in check.

Scott Benner 6:06
So aside from the fact that they're having a terrible reaction to the insulin, I guess the inflammation is stopping the uptake of the insulin as well. Yes, yes. Okay. So now, so then it, does that force them to use more, which increases the reaction?

Bonnie M. McCann-Crosby, MD 6:21
Absolutely. Absolutely. In You know, oftentimes, you know, we're talking, you know, very, very tight insulin to carb ratios, and just nothing is really working. I mean, we're talking like one to two, one to three, insulin to carb ratio.

Scott Benner 6:36
So what do you do? Like, I mean, kind of walk me through, like, pick any of your patients in your head, I don't need to know their name or their details, but the first time you see this, how do you how do you try to help them?

Bonnie M. McCann-Crosby, MD 6:48
Well, um, you know, we try different types of insulins, obviously, if one is not working, you want to kind of go through all the other options. So if Humalog is not working, okay, let's try Novolog. Let's try a pea dry, let's try, you know, fiasco, let's try any different type of insulin, to see if that will work and create a similar or less, you know, less similar response, you know, and that can even prove challenging as they're going through this. And so, you know, oftentimes, we'll get our allergy and immunology colleagues involved as well to see if there's anything we can do, potentially topically, like, like a steroid cream, or even orally, like anti histamine, anything that can kind of mitigate the reaction, minimize it. And so that's kind of the starting place for these type of cases.

Scott Benner 7:42
So there are there are different levels, like are there some people who you can treat like with a topical, something that that keeps it reasonable? Or, but we're not talking about that right now? We're talking about, like, really extreme cases?

Bonnie M. McCann-Crosby, MD 7:55
Yeah. You know, and, of course, you know, there's a lot of people that do have like skin sensitivity to, you know, maybe a little bit of an air area around the injection. And it's more common, of course, with like adhesives, with pumps and things like that. And then, you know, yes, you can do topical things. But when you get to the level where, you know, you've got significant, you know, inflammation and a reaction to that level, you know, you got to start thinking, Okay, what, what else are we going to do long term, right? Because even if a person were to become, you know, tolerating a new insulin for a little while, that doesn't necessarily mean they're not going to develop a new reaction, right? So you still have to monitor and maybe they're doing okay for a little bit, and then potentially, they could have another reaction later on to a new insulin. So it's definitely a challenge to try to figure out like, what's the long term game plan for this these cases?

Scott Benner 8:49
What are the most extreme things that you've seen happen to people's like day to day life because of this?

Bonnie M. McCann-Crosby, MD 8:57
I mean, you know, DKA is obviously the most extreme, right, because, you know, they're not getting absorption, they're in the hospital multiple times, in, you know, blood sugar's run in three hundreds plus all the time, and you don't have a lot of reserve, right. So, you know, if you are missing, at least even like a fraction of absorption, you're going to be at higher risk to go into decay. And then, you know, just on a day to day basis, I mean, you know, think about it, if you are having pain every single time you inject insulin you become maybe you don't want to inject your insulin, right, maybe you become kind of depressed because every single time you do this, it's causing excruciating pain over and over and over and over again, and there's not really a good, you know, other solution for you. And so that, I mean, that's the worst part of it, I think, is a psychological aspect.

Scott Benner 9:55
I would imagine too, it could lead to eating issues like oh yeah, refuse Right. And so

Bonnie M. McCann-Crosby, MD 10:02
it may you know it, you know, patients may choose to kind of carb restrict or you know, more keto, but that, you know, in growing children is obviously a concern, right, they need, you know, certain amount of carbs to grow and so that that definitely becomes challenging.

Scott Benner 10:21
So, I want to just be clear, like stopping here for a second for people listening, like my daughter doesn't like vs burns her right? Like if she wears a pump with the Aspen and for a couple days, she says the spot is sore, like so we just say okay, like she doesn't her body doesn't tolerate something about vs very well. But that's that's not what we're talking about, like, about like, significant severe things to the point where if you go back to Episode 504, and listen to the conversation with Sasha, like, she's having all of the issues that that Bonnie's describing now, like, and I feel like I should be calling you Dr. McCann Crosby. How do you want me to talk to you? What do you want me to does? Either way, it doesn't matter. I'm gonna go with Bonnie. So I hear just enough Texas and you're you're making me feel very comfortable. So this is a big deal. And and the stuff that that that Bonnie is describing here is super real, like people not eating there. It can't get their blood sugar's down, ending up in DKA. Like and not in, there's no end of it. Not going to stop for them. I don't want to give the whole thing away about 504 in case people want to listen to it, but oh god, Bonnie, this isn't Can you hold on one second? Um, so yeah, this never happens. But hold on, yeah. Are you using insulin? If you are, wouldn't it be great to see what it's doing. And I mean, by what it's doing, I mean, what it's doing to your blood sugar. Don't you want to know how quickly your blood sugar is moving. And in what direction? You can you know, with the Dexcom, G six continuous glucose modeler, speed, direction, and number, all at the touch of a button, really, you could just open up your Dexcom receiver and there's the information you need, or you can use your phone as a receiver. My daughter uses her iPhone. Let me pull up her blood sugar for you right now. Interesting. 123 is her blood sugar. And I can see it starting to come down. Right, so she's eaten recently, a higher carb meal. That's kind of sticking to her a little bit. But I can see the insulin working. And I can see it's crazy. I'm just looking at the graph. And I can see her blood sugar kind of bending, right, like it's a little stable. And now it's sort of curving down. It's it's telling me that the Bolus we use this working and you can see all this as well on your Android or Apple phone. I'm a follower of my daughter, she can have up to 10 My wife is also following that would leave eight more nurses family members well meeting people on the block. I don't know you whoever you want, you can let whoever you want follow. You also don't have to let anyone follow it's completely up to you. Dexcom is going to tell you the things that you need to know to make great decisions with insulin, speed direction and location of your blood sugar are you 88 unstable for 88 and falling big difference right 88 and stable Whoo, all good falling might need some carbs going up might need some insulin. All right in front of you on this easy to understand graph. It's just a line it kind of just just flows into the future up down stable and soon after using it you just get a vibe for it. You know how it works and you can kind of be ahead of the diabetes roller coaster instead of you know hair back and screaming and always riding it dexcom.com Ford slash juicebox I can't I cannot I cannot tell you properly I don't think what a big, big big impact it's made on my daughter's health and mine. Before I go I want to remind you to check out touched by type one.org It's a wonderful organization doing things for people living with type one diabetes that are just so heartwarming, you have to see them yourself and you can at touched by type one.org also on their Facebook and Instagram pages Alright, now we'll get back to Bonnie I know I was the one that interrupt this episode. I'll tell you guys when it's appropriate why I've been getting a lot of calls. While I've been making the podcast lately but not right now. For now let's get back to Bonnie she's going to explain how they took care of this problem for her patient. It's legit amazing.

I'm really sorry Bonnie, I had take a phone call, which I apologize for. Okay, so we now understand completely like what this the impact of this is, and that you really don't have any recourse or you didn't you thought had any recourse as a physician, these people still need insulin, they're going to have these reactions like trying to, you know, treat what happens next isn't fixing the problem. It's just kind of quelling, you know, symptoms that as bad as they are, right. And so, when you contacted me, you were just looking to speak to Sasha's family, right?

Bonnie M. McCann-Crosby, MD 15:33
Yeah, just to kind of hear their experience and kind of different things that they had tried in the past and how things were going for them currently.

Scott Benner 15:44
And after speaking with them, what did anything strike you to try? Or where did you think you were left?

Bonnie M. McCann-Crosby, MD 15:50
Well, you know, her case is, is certainly very unique. And you know, in her case, they ended up with the the Daya port system, which required a lot of planning and time invested, because it is only available in Europe. And apparently, they had to fly this German surgeon over to Canada, and you know, he had to train them how to put this thing in, and then the upkeep and everything like that is is quite expensive for the ongoing supplies and the insulin. And, you know, it's it's definitely a lot and you know, you know, reaching out, I did reach out about diapers in the US, but that is, you know, very, very complicated and requires FDA approval, which of course, takes a lot of time, right. And so, just kind of thinking about other ways for these patients. In one, one thing came to mind, which is technically not FDA approved for people younger than 18. But is the inhaled insulin, a Frezza? And yeah, so that's kind of, you know, honestly, your podcast was kind of just opened my mind into thinking about different ways to treat patients with these insulin allergies. And, and that kind of led me down towards the Frezza pathway.

Scott Benner 17:19
When you thought that, did you then think I'm a genius, afterwards? Because that's what

Bonnie M. McCann-Crosby, MD 17:23
No, no, this was actually, you know, you know, these, these discussions are never made, you know, just with one with me, right? So it was kind of my whole, my whole team, were kind of talking about these situations, and what else could we try? And so it was a team.

Scott Benner 17:37
All right. Okay, Bonnie, everybody's hurt. Yes, man. Okay, everybody helped. I understand, like, yeah, fake credit from anybody. But I'm just saying, I would have been like, Oh, my God, I'm a genius. So to kind of, like, tease this out a little further to make sense of it. If if a person who's allergic to their injected insulin, gets it through this port, it magically doesn't, it doesn't bother them anymore, right? It becomes then the problem of the expense and the difficulty, right, and that there's a certain kind of insulin that you use with the port. That's not it's very expensive and not covered by insurance, etc. So right, right, right. But but the takeaway from that should be if you can bypass the subcutaneous delivery, somehow, they're not having a reaction. Right? So when you think a Frezza is, is the molecule sold, so different, that it doesn't make you think, Oh, God, what if we spray insulin in their throat? And they have a reaction in their throat?

Bonnie M. McCann-Crosby, MD 18:37
No, that's, that's a definite concern. And so, um, yeah, because it, you know, it is, it is human insulin, right? It's the same and it's just not being injected into subcutaneous tissue, obviously, it's inhaled, which is, you know, brings about its own concerns, which we can kind of get into, when we talk about how one would kind of initiate this in a patient with a concern for insulin allergy,

Scott Benner 19:01
I would imagine you find the flesh on them that is most likely inside of their mouth and spray it on it and see what happens. Is that what you did, yeah, so

Bonnie M. McCann-Crosby, MD 19:09
um, you know, in these cases, you would definitely want to get allergy and immunology Doctor involved, to be able to kind of help monitor for reactions. And so I think, you know, first would be to kind of try a little bit of a local area in the mouth and just kind of see like, how that goes. And then, when you're really going to do first dose, true inhalation you really need it monitored, right, in a clinic, with an allergist who can be prepared with, you know, epinephrine, and anything that is needed in case we have an anaphylactic reaction in the lungs, right like that. So that's, that's the big concern, obviously. So it needs to be done in a very carefully monitored situation.

Scott Benner 20:00
Were you there when it happened?

Bonnie M. McCann-Crosby, MD 20:02
I was there. Not in the, you know, not in the room. But, you know, I'm there in the clinic when when these things are done. So yes.

Scott Benner 20:12
What was the story? was the concern? All was it as great as what if we have to like, tube this person? Like couldn't have gotten that bad? Like it was at your expectation that it could have went anywhere from Hey, this could work? Yeah, we might have to assist them in breathing.

Bonnie M. McCann-Crosby, MD 20:27
Yeah, I mean, you have to, you have to plan for the worst, right? Like hope for the best plan for the worst in these cases, because you just you don't know what's gonna happen. And so, you know, and, again, has to be very closely monitored.

Scott Benner 20:40
You just described being married. I don't know if you're married or not. But oh, I am. Yeah. For the worst hope for the best. It also applies to raising children and buying a dog. So it really does. It applies to everything. So I'm like, I'm so I'm fascinated. So this patient, you had one in mind that you were going to try it with first, I imagine. Right? Okay, this person comes in. And what happens? I mean, you they have, I mean, do you have it? Is that how they like What's the word for how Yeah,

Bonnie M. McCann-Crosby, MD 21:11
it's inhaled? Yeah. I mean, it's like, like an asthma inhaler. So you know, you can kind of have a device, kind of, just breathe it in your mouth, right? Just inhale it. That's how it works

Scott Benner 21:23
for they took in some carbs. And then you were like, Alright, here we go.

Bonnie M. McCann-Crosby, MD 21:26
Yeah, that's how it how it's done. Wow.

Scott Benner 21:29
Like the almost like a last meal situation. would have been like, yeah, this goes upside down. I want to have something really good. So okay, I mean, like, what happened?

Bonnie M. McCann-Crosby, MD 21:45
I mean, you know, again, I can't I can't say specific details, of course, but, you know, overall, good response. And no emergencies occurred. So

Scott Benner 21:57
yeah. So they were able to inhale the phrase, is it a phrase or a phrase? It's a Frezza. And they did not have any like, but like pain, bumpy bumps, bubbling, anything that was happening on the on their skin with the other insulin just didn't know. Wow, that must have felt amazing. For them to you for I mean, I would imagine everybody's just running around thrilled. Yeah. Can you has this made a significant impact on this specific person's life?

Bonnie M. McCann-Crosby, MD 22:27
I mean, again, I can't really speak to

Scott Benner 22:30
tell me where was it a was it a improvement? Yes. I

Bonnie M. McCann-Crosby, MD 22:35
mean, overall, yes. Okay.

Scott Benner 22:36
Are there still issues? No, no. Wow, you were just being very careful to protect people's information. Okay. Excellent. So Wow. So you fixed it, Bonnie? And your friends, everybody who helped? I understand. Don't worry. Yeah, yeah. Wow. So then do you look back at other people, like you start going through records and finding other people this has happened to in the past? And like, what's your next feeling after you accomplish that?

Bonnie M. McCann-Crosby, MD 23:01
No, definitely. I mean, if there, you know, Are there cases that come up? We're gonna keep this kind of treatment in mind? Because, you know, I think it's a viable option. Now, of course, you know, this does not replace long acting, right, this is only short acting therapy here. So you have to make sure that, you know, these patients can be on a long acting, of course, so whether that be Lantus, Joseba, Basal, or like whatever, but you have to make sure that they can also tolerate a long acting that we don't have a reaction to, you know, obviously,

Scott Benner 23:35
in this very, in this specific situation that we're not being very specific about, could that person tolerate along I think insulin? Yes. So what do you think it is about the shorter acting insulin that they can't take? Do you think it's a preservative or something? They have you ever looked into what what they're allergic to?

Bonnie M. McCann-Crosby, MD 23:52
Yeah, I mean, it's possible it is a preservative and I and we haven't tested you know, specifically but it there's got to be something in in that short acting that that these these patients are obviously reacting to, but because maybe it's just something some reaction, you know, within the skin, but yeah.

Scott Benner 24:18
And it doesn't matter like like you said, a PG or Novolog, fiasco, whatever, you tried the same reaction. Wow, that's crazy. So but that thing doesn't exist in even in the modern Basal lecture Seba.

Bonnie M. McCann-Crosby, MD 24:37
You're not sure you know, everyone is there. Yeah. I mean, I think there's different ones that are there different preservatives and each one so I mean, I think you just you have to try each one to see which one they're not reacting to. So, you know, we were able to find one long acting that did work without any issues.

Scott Benner 24:56
Would you share that or can you know, okay, Well, if I get the person on it, I'm sure they'll be able to tell me. I'm sure they will. That's amazing. Oh, wow. Like seriously? Like, is this one of those like, this is what I became a doctor for moments. I like to think so. Yeah, no kidding. I mean, that's just such a big shift for someone like me really, like, just boil it down to it's, it's, oh my gosh, you have diabetes, you're gonna have to take insulin every day for the rest of your life ups. You're allergic to insulin, sorry. Like, where do you like there's nowhere to go? Like, so there's people are torturing, they're torturing themselves with this insulin because it's their only option. How many people do you think you've seen with this issue? Well, first of all, how long you've been practicing? And then how long do you think you've seen? How many people do you think you've seen?

Bonnie M. McCann-Crosby, MD 25:44
So I've been practicing for six and a half years now. I mean, this is extremely rare. You don't? This is not this is not common. I mean, this is like a I mean, it's it's like you're lucky if you see a case in your lifetime, probably.

Scott Benner 26:02
It's not or unlucky, I guess I should say, it's not even a thing like like, since then when you when you meet a person who's newly diagnosed, you don't think in the back of your mind? And I hope you're not allergic to it just right.

Bonnie M. McCann-Crosby, MD 26:14
It's just it's not really, it's just not these are not common things, of course.

Scott Benner 26:19
Okay. Wow. And so do you? Do you know of a handful of patients like this? Or? Not even? Not even? So are you on here today hoping that people will hear about this? And in case it's they've been touched by this problem?

Bonnie M. McCann-Crosby, MD 26:35
Yeah, I mean, I think the big thing is that, you know, this is an option, right? And, and if we are stuck in a position where we can't really get the diapers, or that's not really a feasible option, then this may be an alternative. That is a lot cheaper. And, you know, potentially, you know, life saving, honestly, it's less

Scott Benner 26:56
and less, just less of an encumbrance. Which right, you don't need an extra thing when you like, you already have diabetes, you don't need more stuff, you know, right. I, so I have to ask you, because that's just how it occurs to me. I mean, I remember when I first came on the market, and people said, Are you gonna try this with your daughter? And I said, I'm not real comfortable with her inhaling something and putting it into her lungs? And I don't know anything about it. I want to be clear. I couldn't, you know, and I'm not I'm not making a judgment. I'm not saying that. There's any studies, I'm just saying that from a knee jerk reaction as a parent, I was like, No, thanks. But do you prescribe it? Generally speaking, in your practice? No, you don't

Bonnie M. McCann-Crosby, MD 27:36
know. Well, and I think, you know, to kind of explain, there are some limitations with it, right. So it only comes in certain unit cartridges, there's a four unit, an eight unit and a 12 unit cartridge. So in littles, you know, who are on I don't know, half a unit with meals, or you're really trying to get precise with the dosing, you can't like, you have to be on a high enough dose that you're on able to take at least four as a minimum, right. And the other issue is that it does not last as long, as you know, say homolog, Novolog. And so they may need in between meals, potentially a correction dose to, you know, to bring down potentially a high postprandial and the dosing, it is different, slightly different. So usually, when you go from human log, or Novolog are one of the other injectables to a Frezza, you're going to be on 20% Higher, potentially dosing on a Frezza than you were on short acting. So it does have some limitations. And then, of course, it's not really, it's not studied in kids. So it's not FDA approved in kids less than 18. So you do have to get, you know, special approval, if you do have a patient with an insulin allergy. And then the other thing to keep in mind is just, you know, you can't use it in a person that has an underlying lung issues such as asthma, right? That could be a bad thing, right? So they have to have healthy lungs, and then you do have to monitor lung function over time to make sure that it doesn't change once you're doing an inhaled drug like this for a period of time. So that's recommendations to get, you know, lung function studies, when you're on this medication.

Scott Benner 29:36
Gotcha. Did you do one initially, so you had a baseline? Cannot say, oh, but would be a good idea, right? Yes. Yeah, just say, I gotcha. I will tell you that I know of a handful of adults who listen to the podcast who use it and really like it. So I'm not I'm not unaware of it. And I just, I don't know, it seems like did you have well, I guess you didn't have that polling the side of you because this was it right. You were down? Yeah, this was the option. Yeah. Wow. It's just amazing that it worked.

Bonnie M. McCann-Crosby, MD 30:08
Yes, absolutely. Yeah.

Scott Benner 30:09
I mean, just it's i It's miraculous, you know what I mean, there's, I think it's because I have the experience of having talked to Sasha for an hour and listening, you know, from like, a young girl, and she, you know, explaining how it's impacted her life. And I follow her on. I think I follow her on social media now. And just to see kind of the lightness that exists in her life now, like, she acts, she's acting her age, and she looks happy and everything. And it's just a really kind of amazing idea. So are you worried about it? lung function wise? Like, take up? Take out for a second? This is what had to be done? Are you concerned?

Bonnie M. McCann-Crosby, MD 30:48
No, I mean, I think as long as you're monitoring, you know, if any changes come up there, I mean, we're gonna you know, you'd have to kind of figure out what's, what's the next plan, but I'm in a, you know, people with healthy lungs going forward? I think. I'm not I'm not super concerned.

Scott Benner 31:08
Hey, I have a question. I didn't ask. Not that you would want to do this. But you try regular an MPH. When you are going through all the different?

Bonnie M. McCann-Crosby, MD 31:16
I mean, yeah, you have I mean, if you're gonna go to a Frezza, you have to try the other ones. Everything you little

Scott Benner 31:20
You tried. Okay, I just went, Yeah, did everything. Yeah. Wow. Oh, my God, I am not asking you anything. I should be asking you because I'm a little overwhelmed how excited I am about this. I didn't expect I'd be so elated by the conversation. But is there anything I'm not asking that you think should be added here?

Bonnie M. McCann-Crosby, MD 31:40
No. I mean, I think I think it's really important, especially, you know, if if someone comes in and does have an allergy, a true allergy, I mean, you have to think about this as a viable option. And I, and I'm glad that you know, it is right, in anything that can be life changing and, and help people not be in pain all the time. Like, this is huge. So

Scott Benner 32:06
So is it. Is it fair to say, Bonnie, that if if somehow magically, five people walk into your office today, they all had that level of allergic reaction to injected insulin? You would say, Well, let's try this. That seems like the viable and maybe only next step?

Bonnie M. McCann-Crosby, MD 32:22
Yeah. I mean, I think it is, I think it is, I mean, short of, you know, going to Germany and getting a diet for right now. I mean, I think that's probably the best best option. If you've exhausted all the other, you know, short acting insulins, I mean, this is a this is definitely an option. But of course, you know, it does, like I said, require getting a prior authorization just in kids. Right. But, but yeah, definitely

Scott Benner 32:50
remind me, and I went over it real quickly at the beginning, but part of the problem with the port was that the company might not be making it anymore, or is that correct? And then, and they insulin was like, literally like 14,000 in cash a year.

Bonnie M. McCann-Crosby, MD 33:02
I don't remember how much it was, but it was, it was very expensive. And even, you know, the, the maintenance of the diapers itself, like all the supplies that you need, and things have to be replaced every year, and it is costly.

Scott Benner 33:15
What is the what is the port do? How does it? Is it like a metal spike? Oh, you know,

Bonnie M. McCann-Crosby, MD 33:22
I don't know exactly what it I don't know, it kind of it looks, it's hard to hard to describe, you can look at the website and see like in a better picture than probably what I can describe. But it basically, you have this little port that goes into the peritoneal cavity, like in your, you know, in your abdomen, and, and then you've got a connection that connects from that port on the inside, to the outside where you've got an insulin pump running and, and pumping insulin. And it's an older version of an insulin pump. I can't honestly cannot remember the name of the company that makes it but they don't make that pump anymore. So but but that's the one that connects with the diet board.

Scott Benner 34:10
It's a ton of hurdles. And I guess if there's, I mean, if you've only seen one in your six year career, and I've had people reach out to me, I have not having a lot of luck getting them scheduled on the show for some reason. But there's like a handful of people who all know each other who have this happening with their kids. And I think they heard episode 504. And then they reached out I have been trying to book them, but I'm not having a ton of success. But I mean, even at that I reach a fair amount of people and that I only heard back from four people was is pretty telling, you know, oh, yeah, yeah, yeah. So companies aren't in the business of I mean, I know it sounds harsh, but companies aren't in the business of making things that four people can use.

Bonnie M. McCann-Crosby, MD 34:50
You know, right. Right. It's

Scott Benner 34:51
true becomes a comes in an issue. Can I ask you a couple of other questions before I let you Yeah, cool. Absolutely. How do you handle I like this You're I was looking at you online. It's not creepy at all. It was just to get ready for this. Do you see yourself as a person who treats thyroid disorders in and out of the box? Way? Are you? Are you very by the book?

Bonnie M. McCann-Crosby, MD 35:14
I mean, I think we have obviously, like evidence based guidelines that we follow, right? And you know, sometimes you, you know, every case is unique, right? So if a patient has a specific need, you may have to kind of think outside the box, potentially, I would say that, in general, I follow the the guidelines, and if there's something that is an outlier, then you have to kind of alter and kind of figure out what's best for that patient.

Scott Benner 35:40
So like, if I came in, and I was like, Hey, here's my nine year old, we'll call him Jimmy, and Jimmy's tired all the time and can't pick his head up off the floor. He's like a puddle. But it's TSH is two and a half, you give you give him a thyroid replacement hormone?

Bonnie M. McCann-Crosby, MD 35:54
Probably not.

Scott Benner 35:55
Okay, what's the number you're looking for?

Bonnie M. McCann-Crosby, MD 35:58
So, I mean, in general, we, you know, my practice is if the TSH is above 10, or the free T four is below the normal reference range, those are my now everybody's different. So right, like if I've started a little bit lower TSH levels, but those are the kind of the general guidelines

Scott Benner 36:19
when that happens. And I don't I'm not setting this up to be an indictment of you. I'm trying to understand the bigger picture if the if the practice or the hospital if that's the the treating rule, then did the physicians not have a lot of autonomy?

Bonnie M. McCann-Crosby, MD 36:32
Oh, no, they

Scott Benner 36:33
do. They do. Thank you. Yeah. All right. I just I was wondering, I, we have a really popular episode with a with a fibroid doctor, who, you know, talks about treating the symptoms, not the number. And, and then a lot of people run into trouble when they go back to their doctors, and they're like, Hey, this is my kid, His hair's falling out, and he can't stand up and be like, oh, is TSH is only five. And then eventually, they get to somebody who gives them the, the hormone and the kid pops back up like a fresh flower afterwards. So I was just, I was just wanting, I was looking for, like a real like, like, outside of the I know, that's not what we're talking about. I just wanted to like have like a top line reaction from you so that people could understand what's happening when they go to the to the doctor?

Bonnie M. McCann-Crosby, MD 37:19
Yeah, I mean, I think you've got guidelines for a reason. Right? But then, you know, every case is different, right? It's, I think you have to look at it on a case by case basis, and then, you know, come up with an individualized treatment plan. So I mean, you know, I would say those are my usual guiding numbers. Right. But, you know, there have been times where things you start at a slightly lower TSH level, you know, so, you know, you just have to kind of take each case individually.

Scott Benner 37:45
Can I ask you what made you want to be an endocrinologist? Oh,

Bonnie M. McCann-Crosby, MD 37:48
man, yeah. Um, I was a biochemistry major, in undergrad, and endocrine, to me, there's a lot of biochemistry involved. And there's a lot of, I love the feedback loops. And, you know, from the hormones, and I loved also just the continuity. You know, you're seeing patients from sometimes, you know, itty bitty all the way through graduating high school, and I loved being a part of their lives for that long, and the subject matter was just super interesting to me. And I liked the fact that, you know, if you were missing a hormone, I could give it back to you. Right, I could treat it and I felt like it was actually making a difference.

Scott Benner 38:32
That's excellent. So no, there's no type one in the family or anything like that. You just know, you're just a science based person to decide. Yeah, that's, that's really cool. Okay, I have a question that maybe you can uniquely answer. Sure. You're in your position, and you're helping a person, and they get up the nerve to say to you, hey, I don't know what happens. They get this like Rocky in a one scene, you go, this is amazing. You're doing great. And they say, I listened to a podcast. What's your first reaction the first time you hear that?

Bonnie M. McCann-Crosby, MD 39:04
I mean, I'm pretty open minded when it comes to that. So I'd say Okay, tell me what podcast you're listening to. And, you know, so I would be interested to know, like, what they learned, and maybe I can learn something

Scott Benner 39:18
that is very progressive. You Thank you. I just I would assume that the I mean, I'm putting myself in my shoes. I know, this is crazy. But I would if I was you. I'd be like, Oh my God, these people on the internet. And so, but I mean, so it happens once you're interested. How many times do you think somebody has brought it up to you

Bonnie M. McCann-Crosby, MD 39:41
has brought up what sorry?

Scott Benner 39:43
No, no, I'm so sorry. Like, how many different families do you think have said, I listened to this podcast?

Bonnie M. McCann-Crosby, MD 39:48
Your podcast? Yeah. Gosh, I want to say I mean, a handful, probably. Four or five? Yeah, I mean, it's definitely I hear about it on a regular basis.

Scott Benner 40:02
That's so cool. Do you have any questions? For me? Do you have like, do you want to know anything? Like why? Like you? I don't know. Maybe you might be like, No, Scott, I'm done. Now I've talked about the thing, we're finished. But no, no thing that like springs to mind. Like,

Bonnie M. McCann-Crosby, MD 40:19
No, I'm just, I'm super, you know, I hear really good things about about your podcasts. And I'm really glad that you're doing what you're doing. And I think, you know, being an advocate for families, for for kiddos with type one, and you know, I think it's great. I don't know that I didn't prepare any specific questions. So,

Scott Benner 40:42
so my thought I'm sorry, I have caught you off guard. It's, uh, but my my thought like, I'm trying to imagine you in that situation where somebody comes in, like literally says, like, I mean, I get my correspondence is pretty consistent. It happens constantly, all day long. So I've gotten three today that almost if you if you read them quickly, you think they were the same note, you know, my son's nine years old. My endo says they've only ever had three people with an N A one C and the fives, it's the stable. You know, I told him about the podcast, blah, blah, blah. Like, I just like, I would wonder like, what is the person saying, dude, like, like, what is like they're listening to this like, like, voice come through their earphones. They're coming back to me with a five, five a one. See the kids eaten whatever he wants. There's not a bunch of lows. Like what? Like, do you wonder if we're like doing like, you know, like, satanic chants on the podcast or stuff like, like the like, what is it? You don't mean? Like, what? What does that make you feel? Like? Like, even now? Like, how does that? Like,

Bonnie M. McCann-Crosby, MD 41:49
I definitely am not concerned that you're

Scott Benner 41:53
the most ridiculous thing I can think of? I'm sorry.

Bonnie M. McCann-Crosby, MD 41:56
No, I mean, I guess Yeah. I mean, what, um, and I honestly, I, you know, I have only listened to one of your podcasts. So I mean, I'm, I am actually kind of curious. Now. You know, what, what kind of things do you tell families with type one,

Scott Benner 42:13
I feel like I've bullied you into this body, but I'm doing it anyway. Okay, let's do it. Let's go there. So, to me, it's a it's, it's very simple and very complex at the same time. So the simple part is this. You have to get your Basal right first, then you have to learn how to Pre-Bolus insulin. And then you have to learn the different impacts of foods and be flexible about their dosing. And then after that, that's it. It's just flexibility. It's not staring at high blood sugar's it's, you know, it's just then that gets into the bigger thing, like the simplicity is right there. It's, it's Basal Pre-Bolus glycemic load index. And, and then it's bigger picture stuff. So that you begin to have these moments where things happen, and you can react so quickly to them, because you just know, and I think that's why a podcast format works. Because you just keep listening, and things just get in your head. And then suddenly, instead of like, Oh, God, I don't know what to do. You just do this thing. You take this step without almost without even thinking about it. And I think that it's, I've seen, the feedback that I've gotten is so consistent, that I would tell you that most of the people who've been listening to this show for more than six months, are probably with very little effort have a n a one C in the sixes and the ones that really like kind of pay a little extra attention or in the fives, no diet restrictions, no problem. And it's awesome. Yeah, and it really is just so anyway, I realized at one point that we were having these big conversations, and you'd have to listen to this hour to pull out like three nuggets which, which actually works, it's a great way for people to, like you don't mean like when you sit people down you go, here's 20 bullet points, and we're gonna learn them all. Like, that's nobody does that. Right? Right. So they absorb all these ideas. But eventually, I realized that like, there's a whole system here. So I contacted a friend of mine, who is I mean, she's had diabetes for well over 30 years, she's a CTE, which I know they don't call themselves CDs anymore. There's something else. And she she came on and helped me do specific drill down episodes on ideas. So now there's like this 20 episode series called diabetes pro tip. It kind of lives inside of the podcast. I would tell you, you listen to that. You're a one season the fives. Nice. That's it. And it's nice, absolutely free. I would never charge money for it. So that's awesome ads on the podcast, but I would never ask anybody to I just don't think the learning how to use insulin should cost you money. You don't I mean, so. Yeah. I love that. Yeah. i That to me, like that's the it's the whole thing. It's giving people it's giving people kind of, I don't know, agency over themselves right now. The the feeling that they can make a change instead of waiting three months, and then putting you in the unfair position of going here, look at all these graphs, what do you think is wrong? Like? Right, that kind of thing?

Bonnie M. McCann-Crosby, MD 45:13
Right. And I think I mean, that's that's the, you know, I love what you said about giving agency. I mean, I think we want to empower our families, our patients, and I think, you know, we want them to be successful. And I hate for them to sorry. I don't know I, I hate you know, this idea when you come in to see your endo and and you get kind of beat down for your agency. It's just a number, right? Like, but I love that you're empowering them to be successful. Right? And it's not as complex as it seems to be.

Scott Benner 45:51
Yeah, it's, it's actually, once you see the big picture, it's kind of like the I know, we're so I'm old at this point. But it's like The Matrix, like it's the spot. It's the point where you're like, oh, I can just stop these bullets in the air. Like, none of this is real, you know, you have that vibe that I think you come into diabetes. And the game is moving so much more quickly than you can follow it. You look like a high school quarterback in a professional football game. Right, right. And then all of a sudden, just like they talk about what some of the greats like the game slows down, and you can suddenly see the whole field and your decision making is just ahead of the game. Right. And I just think so much about I think that being ahead of diabetes is important. Like I think that playing from behind or chasing blood sugars is a fool's errand, like you need to write make a decision that impacts something so that at least you know that what happened next, you did. In fact, instead of having that feeling of like, I have no idea what's happening here. Like, like, and you get lost,

Bonnie M. McCann-Crosby, MD 46:54
right. And I mean, so often, you know, I always, you know, I feel like, you know, people are chasing their tails with blood sugars and all this, but no, and I think if you're proactive about it, I mean, that just sets you up for success. Absolutely. Yeah.

Scott Benner 47:08
No, it really is a, it. It's not I don't think diabetes ever is easy. No, I think you can get so good at it that it could feel easy. And I think that's an important distinction, like it is a really difficult thing. But you know, just, sometimes you have to look at it very micro. And sometimes you have to look at it macro. And a lot of times people get it flip flopped. I'll tell you one thing that I see super common is that people will have, I don't know, say they need a Basal rate of a unit an hour, but their doctor has them at point six. So then they make these aggressive Bolus is at meals because these meals are always spiking. Right? They don't Pre-Bolus Because nobody tells them to so they're there. They put in too much insulin for the meal at the wrong time. They spike way up and an hour and a half or two hours later, they crash down they get low and they have to correct it. Correct. Then they bring a coaster. Yeah. And you bring that graph to your doctor, your CD or whomever and you say, Look, I'm getting low after meals, and they always take away the Basal instead of looking and saying well, I bet you like look overnight here. Your blood sugar's one. It's pretty stable overnight. It's yeah, 170. If we made your Basal higher, I wonder if we could find stability at 90. And if great if we did that, I wonder how much easier it would be to Bolus for the Beals, right? And then we would balance the meal insulin better not find a low later. But somehow just seeing low to them means take away insulin. And it's backwards. It's sometimes backwards. But

Bonnie M. McCann-Crosby, MD 48:38
I agree. I mean, I think if you don't know. And that's why you like for me, I have to know like, what is the pattern? Like? When are you dosing? What are you? I mean, it's everything right? But if you don't understand the pattern, you're just looking at numbers. Yeah, it's up to you. You may say, okay, oh my gosh, the mealtime coverage is too much and back off, but that's not the right answer. So, no, you're absolutely right. You have to know what is the backstory, right? What's happening.

Scott Benner 49:07
There's a tug of war that happens in meals between the carbs and the insulin. And the biggest mistake I think we let people make is we we yell go when we when we push the button, you know, on the on the on the insulin at the same time we start eating which was extensively gives the carbs a head start. Oh, yeah. And then everything's just a mess, right? It doesn't matter if you use the right amount of insulin, if you use it at the wrong time. It's not going to work.

Bonnie M. McCann-Crosby, MD 49:32
That's 100% True. And I you know, Pre-Bolus Singh, is huge. And you know, it's something that I definitely stress in my practice is realist Pre-Bolus and they come back and they start doing it and you see the difference on the Dexcom and you're like, oh, wow, look, you're not spiking after meals anymore. It's amazing. It makes a huge difference.

Scott Benner 49:53
That's it's such a nice feeling to see people when they when they kind of crest that hill and they get it all of a sudden had a an episode go up actually, I had an episode go up today from a lady from Texas. Her episode is called crazy mom from Texas, which is just a name she gave herself. So I'm in the clear. But she's a person who reached out to me through social media and I ended up helping her kind of privately like just texting with her once in a while and asking her questions. That's about a year ago now. So, six months after I spoke to her, we recorded the episode and now six months later, the episodes up. And she texted me today. And she's like, look at my graph. And she sent me a 24 hour graph that's never below 80 or above 130. Amazing. She's like you, like, taught me how to do all this? And like, oh, my gosh, your text messages? Wow. So I just think it's, I think it's infinitely doable. And I I hope that the people that people count on have the nerve to tell them about the tools that they need instead of, you know, and and don't chastise them when they figure something out, because that is a big problem. People figure out on their own, they go back to their doctor, their doctor is like, you can't do that. Like, dude, it works look great. You know, they're like, oh, you can't do that. Like, I can't do like, and then they take their pumps from they change all their settings, and they walk out in the parking lot and put them all back again. Like yeah, yeah. What are we doing?

Bonnie M. McCann-Crosby, MD 51:16
Right? No, I hear you. I hear you.

Scott Benner 51:18
Where are you from originally? Because you're not from Texas originally. Right?

Bonnie M. McCann-Crosby, MD 51:22
You know that you notice that? No, I'm from Michigan originally. Yeah,

Scott Benner 51:25
you have like that upper midwest thing. But you you've you've used like one or two colloquialisms that told me you've been in Texas for a little bit. Really? Well. I

Bonnie M. McCann-Crosby, MD 51:35
have been here since I've been here since I was 12. And that was a long time ago. So yeah,

Scott Benner 51:39
you felt real mix like your your your accents. Cool. So that's it, Bonnie, we did it. Awesome. There's nothing I didn't forget to ask you are that you didn't forget to say then you can go back to your life.

Bonnie M. McCann-Crosby, MD 51:52
I think we're good.

Scott Benner 51:59
I want to thank Bonnie for coming on and sharing all of this. I also want to thank touched by type one for sponsoring the episode and you know what else Dexcom are also sponsors and they deserve a thank you as well. You can head over to dexcom.com forward slash juice box to find out more about the Dexcom G six continuous glucose monitor and get started today and learn more about touched by type one on their website touched by type one.org. They're also right there on your Instagram and Facebook feeds. Check them out, give him a follow. I want to thank you all for listening and let you know that I'll be back very soon with another episode of The Juicebox Podcast