Why One Diabetes Diagnosis Doesn’t Fit All: Understanding Your Unique Map

So two women came to see me the same week, same age, same A1C, 7.8. One of them needed almost no medication, and the other one was months away from being on insulin and had no idea. Same number on the same lab report and two completely different scenarios or different diseases. One of them had simply been handed a wrong lab, and she had been following it faithfully for years. Your diabetes could be completely different than your neighbor's diabetes. Your diabetes could be completely different even within the family. Your body's biology dictates what kind of diabetes you have to do.

And for our listeners, you already know, but Dr. Rangi is endocrinologist and the author of The Diabetes Blueprint. And going back to that opening, that really kind of gave me chills hearing about this client and two different clients, rather. Because I think most people tend to assume that diabetes is just diabetes. But from what I'm understanding, that's not true. And what we all have been really thinking is wrong. So for that, let's kind of just start at the foundation. And when you mentioned that diabetes is not a disease, what do you actually mean?

Layla, we had this discussion earlier as well, but I want to elaborate on more things this time. Diabetes is not one disease. You know, we normally say, oh, well, I have diabetes or so and so and your diabetes could be completely different than your neighbor's diabetes. Your diabetes could be completely different even within the family, your parents or grandparents. So your body's biology dictates what kind of diabetes you have. There's different kinds of diabetes that we talk about, and those kinds can be depending on what kind of nomenclature you look at. But today we're going to talk about at least six different patterns of diabetes that we normally see. Each is driven by a different biology. You have type 1 diabetes, type 2 diabetes, then there's something called LADA or latent autoimmune diabetes of adults, then there's something called MODI MODY, which is a genetic condition. Then you have gestational diabetes, which happens during pregnancy. And the high-risk profile, some lean and ethnically predisposed adults carry. Okay? Some diabetes don't have a name, but they may present in a certain way, and their response is very different for the treatment plan that we choose for them. So we need to recognize that there's different patterns and different types of diabetes that happen. We have spent decades treating one number and one label. We try to treat type 2 diabetes as if it tells a whole story. And the map is not wrong. You can call it dangerously incomplete. You know, you need to know more to treat that type 2 diabetes. So two people can sit in my office with identical test called A1C and need completely opposite treatments because the force driving the disease is different for each of them.

That's so interesting to hear. I think that, like we spoke about earlier on, is that most people assume diabetes is one disease. But I know in your book you actually talk about a patient named Dorothy. So can you kind of tell us about her and what happened to her?

Yeah, so Dorothy was treated as type 2 diabetes for almost 14 years. 14 years of pills, of being told to lose weight and try harder, and of slowly getting worse. So just imagine you're told you have this condition, you take this pill, and you're not getting better because maybe you're not putting enough effort. When she came, I knew something was different about her. We did some tests, and I'll discuss those tests in a second, but that helped me define what kind of diabetes she has because she did not have that typical type 2 diabetes that we talk about, and hence she was not responding. So eating better and moving more doesn't go wrong. You can still do that, but it's not going to work on your underlying mechanism or the problem that is happening. One simple test called the GAD antibody test revealed the truth. She did not have type 2 diabetes. She had something called Lada or latent autoimmune disease, diabetes of adults. It's an autoimmune condition, but it is a slow autoimmune condition. So it is not like type 1 diabetes where you have sudden drop in the beta cell function where you don't have any insulin production. Here you have very slow decline in beta cell function because of autoimmunity. So her body was not resisting insulin. It was just that it was quietly losing its ability to make insulin. So Dorothy is not rare. You know, a large share of adults who actually have either type 1 diabetes or they have LADA are first diagnosed as type 2 diabetes. And some estimates put it near 40%. And that's a big number. The tragedy is a lost time. The window where you can still protect what is left of that narrow, the beta cell function that it was making. So I may have chosen to start insulin sooner in her case than to continue with the pills. Every year you spend on the wrong plan, it's progressing further.

So how do you actually figure out which diabetes someone actually has? Where do you really start that whole process to figure that out?

Yeah, so Layla, there are two forces that are constantly working. Every case has a mix of those. So we really need to find out the big picture is who has insulin resistance and who has insulin deficiency. In other words, where do we have plenty of insulin produced by our body and it's just not working? Or we call it lock and key. There are a lot of keys being produced, but the lock is rusty and you can't open it. Or the keys are not even being made. So you have plenty of locks, but the keys are missing. So that is insulin deficiency. Resistance is when your body makes plenty of insulin and then the cells they stop listening. They're not responding. And deficiency is simply we cannot make enough insulin. So that is very clear, right? So just think about a car that will not move. One reason is your foot is jammed on the brake, right? That is resistance. The moment you take the foot off, you can make it run. So what we do is we have to use any medications or any therapies or any kind of plan for that person to get the foot off the brake. Okay. So to decrease the resistance. The engine is fine, but something is holding it back. The other reason is the tank is empty. Now, no matter what, how much you take your foot off the pedal, it's not going to move. Right? So no amount of pushing the gas will help. If you treat an empty tank like a stuck brake, you fail and you lose the precious time. And that's exactly what was going on with Dorothy. She was not making enough insulin and she needed help with that. So she had insulin deficiency. So in most people, what we understand is one way or the other, they may have complete resistance of insulin where they're not responding, or they have complete deficiency, which is in extreme cases we are calling that type 1 diabetes. And there could be a spectrum in between where they may have some deficiency, some resistance, or they may have more resistance, less deficiency. But in this case, she had Lada, which was deficiency. So the treatment plan would have been completely different compared to the pills that were given to her.

So you mentioned Lada, and the book also talks about Modi. And I don't know what these are. They kind of sound like alphabet soups. So can you tell us what they are in simple terms?

You're so right. And not only are these alphabet soups, the new medications that we're dealing with are also a bunch of alphabet soups. So let's try to uncover this and solve this problem, you know what it is. So Lada, like I said, is is technically type 1 diabetes, but is in slow motion. So it's not happening right away. You slowly have beta cell decline showing up in the adulthood. So it's not in childhood, it is in the adulthood, but it starts slow and progresses slow. It looks like type 2 at first, which is exactly why it gets missed. And MODI is a genetic form, M O D. That is a genetic form of diabetes where you have a single inherited gene that changes how the body handles the sugar. It often runs strongly through the family and it can be confirmed with a genetic test. It can be tough to get the genetic test, but we have another patient in the book that we talk about that is Claudia, who was treated as type 2 for a year before a genetic test revealed that she had Modi, which changed everything, including which medication she needed and which one she could stop. So everything is testable. If your diabetes does not fit the usual story, if you're lean and there's some pattern that we notice and there's no family patterns of obesity or there's sugars went up too quick too fast, or if the medications never worked right, then we should look further and try to understand what could be going on. Could there be some hidden type of diabetes? I'm not trying to scare people here where I'm saying that everybody's diagnosis is wrong. No, that's not the case. The point is that if you're not fitting the picture and your response is not happening the way we expected, then it's time to look into it again. Do I have the right diagnosis?

And I don't know if this is true or if it's a myth. I think that it's a myth, but the myth that I've heard is that diabetes really only happens to people who are overweight or significantly overweight. But I know that your stance is not that, and you push back pretty hard on that. So can you kind of talk about that?

Yeah. So in and again in the book, we talk about that as well. This myth can cost lives, you know. Uh, you do not have to be heavy to be at risk. I write about a patient called Ravi. You know, by the way, all these names that we have used in the book are not true patients. You know, we have masked them. So Ravi was lean, active, he ate well. In fact, he worked as an engineer and he's a South Asian descent. But his body carried a risk. His bathroom scale could never see. So some populations they develop metabolic disease at lower body weight. They don't have to be that obese or overweight, and they get that at younger age because of where the body stores the fat and how the cells behave. A normal weight, even with a normal-looking A1C, can hide the real risk. The scale is one of the most misleading numbers in medicine. I often talk to my patients that diabetes is not a blood sugar problem only. It is a heart disease. It's it affects every organ. So we cannot just say that, well, the blood sugars were high for some time. That could do a lot of damage. So just don't go by the weight. Don't try to minimize a problem. We need to understand the map well. We need to try to get to the bottom of it and understand how to treat that individual person.

And so it sounds like you can be thin on the outside, but on fire on the inside. So that's a good way to say. So and it's just so interesting. But so let's kind of like narrow this down and make this concrete. So, what actually goes wrong when someone is on the wrong map?

Yeah, so three things can happen. If they're on a wrong map, they will get basically we're saying wrong diagnosis, right? So if you don't have the right diagnosis, then we may treat them different. We may have wrong treatment for them. We've lost the time, and we may falsely be blaming the patient for not trying enough. So those are the three things that I worry about. The wrong treatment means you take the drugs that cannot work for your biology. It may not cause any problem or the medication may not directly hurt you, but it was not working on the underlying problem. Now, lost time means the disease keeps moving while everyone congratulates themselves for the effort, you know. So they may think, oh well, I'm exercising more and I'm, you know, my diabetes is going to be under control, but it may be a completely different reason. Of course, the exercise is still going to help in a lot of ways, so I'm not minimizing that again. But the lost time is there, the disease may progress in that time. And the false blame means you're told you have failed. When your plan failed you, it's not that you didn't do it. So I see people who have seen five, six, seven doctors. You know, everyone told them to try harder. Not one changed the plan. That is not the willpower problem, you know, that is a map problem, or that's a diagnostic problem. And diabetes does not wait. It's silently working and progressing over time, affecting your heart, your kidneys, your blood vessels, your nerves, and the whole body. So the cost of a wrong map is measured in organs.

Absolutely. And you say that there's three tests that can really change everything. So what are they and what do they reveal?

Layla, the three tests that we talked about are pretty simple tests. They're not that expensive. And I sometimes add more things as well, depending on somebody's risk factors. But the three primarily that we're talking about are C peptide that tells me how much your body making insulin. When our body makes insulin, it makes in a form something called pro-insulin. And pro insulin, when it cleaves part of it, or that's called the C peptide, there's a part of the molecule. And the rest of the pro-insulin is active insulin. So the active insulin stays in your body. So we can measure the C peptide and we can measure that active insulin instead of just measuring the insulin. And the third test we can do is GAD antibodies or GAD. The C peptide and the fasting insulin tell us how much your body is making, how much insulin is your body making. And if it is too much, that means you are capable, your body is able to make enough insulin and it is just flooding the system, and the system is not responding because of resistance. And if it's running very low, that's telling me that you have deficiency. Your body is just not able to make enough. Now the GAD antibodies tell us whether your immune system is attacking your own insulin-making cells. That's a signature of either type 1 or LADA. So either you have type 1 diabetes or LARA. So these are simple blood tests, not exotic ones, and you know they just often never order. There are some other situations where your these tests may be altered because of certain situations, and that's why it's not something that we ask patients to just get their tests done and diagnose themselves. So you need to know what you're doing, but these relatively give us good answers to understand what could be going on somebody's body for in regards to their diagnosis.

Absolutely. So once someone does know their type and you talk about three windows, what does that mean for someone's future?

Yeah, so when when we talk about diabetes, there are a few things that I'm looking at. Number one, do I have the right diagnosis? You know, do they have what we are thinking they have? So we need to confirm it. Once I confirm it, I try to put the pieces together and I try to understand how long somebody had the diabetes, what is their family history, what are their environmental factors, what else is going on that can help me along with these tests to understand can this person reverse diabetes? You know, and we talk about that in the book as well. Reversal is only possible when you are in pre-diabetes age. So that's I call that as a last exit. So if you have pre-diabetes, work harder, don't ignore it. That's a time you can reverse things. Once you develop diabetes, that's when you can go into remission, but you cannot reverse it. Now that is something very clearly said by ADA and other guidelines as well. So the three windows that I talk about in the book are reversal, remission, and protection. So if you are too late, where the remission is not possible either, in other words, you can manage your condition without medications. So you must have heard a lot of people saying, Well, I changed my diet and exercise and I'm not on any medications. And if your blood sugar is completely normal or if your A1C is less than 6.5 for at least three months, that means you are in remission because you have no medications and you're doing really well. But if you're continuing to be on need for medication because you need better control at the end of the day, it's not proving how much your body can heal. Yes, you want to be on minimal amount of medications, but at the same time, you don't want to fight medications if you truly need it. So if you are in a certain window where we cannot reverse it, you cannot go into remission, then we call that window as protection window. And that is when we need to do everything we can to keep the diabetes under excellent control. And that control is defined in very different ways, depends on what you look at. If you're looking at A1C, which is a test everybody does, then we're looking at that control to be less than 6.5, which one guidelines say. The other guidelines ADA say is less than 7%. So as long as you're less than 7%, I'm okay with that. But I try to individualize care and I try to do personalized care, and in that case, I try to make it less than 6.5 if I can. And some people I might even keep it at 7.5 because they're at a high risk for hypoglycemia. And then if somebody's on continuous glucose monitor, we try to keep their time and range to be more than 70% and their GMI or glucose management indicator to be less than 7%. So what is tight control is what I'm sharing here. But in the protection window, we want to make sure everybody's following that plan and path at least. In the other two windows that we're talking about, you've been able to do whatever you could best do just with diet and exercise. There's no medications involved. So again, once again, the three windows we talk about are reversal, remission, and protection.

And you can't know which window is open until you know which disease you have. So the map really determines the destination in this case. And for someone listening now who has already been diagnosed and they're wondering if maybe they're on the wrong map, what should they do this week? What do you recommend?

I would suggest at your next appointment or when you see your doctor, ask them, Do I have the right diagnosis? You know, am I on the right map? You know, a single question changes a conversation. And then get specific. Have we ever checked which type I really have? Do we know if my body can make insulin? And if it can, is it making too much? Is it not making at all? Or is it making too little? You know, obviously, if you have not at all, you'll be symptomatic. If you're making less, you may still be able to keep up, but your numbers are running higher, your medication is not working. So the presentation tells us too. So I'm not saying that the doctors don't know what they're doing. All I'm saying is if you are in that zone where you're uncontrolled and we don't have good answers, it's time to maybe do the testing and understand better if you're on the right map.

Well, thank you so much, Dr. Rengi. I think that this really completely reframes how I think about a diagnosis overall. And I think that one main key takeaway from this episode is that diabetes isn't just one disease and you deserve to know which one is yours and to map what is hidden, and also you can finally treat what is actually there. So I think this is such an important conversation. Again, it reframes how I think about it. I'm sure a lot of listeners can relate to that as well. And for everyone, make sure that for any questions you actually have, make sure you bring them to your next visit. And the diabetes blueprint tool is on www.rangymd.com. And please make sure you check that out. And for everyone listening, make sure you follow, subscribe, and share the show so you don't miss more valuable content and information. And before we wrap up, is there anything else you wanted to say, Dr. Rangi?

Yeah, I would like to say, Leila, that the book is coming out in July and sometime in mid to late July, I would think. Keep a lookout. If you go and sign up for our book, it's rangemd.com slash blueprint. So you can sign up for the update so you'll know exactly what date it's coming out. So you can learn and understand and maybe take the book with you for your appointments.

That's actually a great idea to take the book to your appointments for sure. It was nice speaking to you as always. And again, make sure you follow and subscribe and share the show. And I will see you next time.

Sounds good. Thank you, Leila. Take care.