The Biggest Myths About Type 1 Diabetes (and the Truth Behind Them)

Type 1 diabetes isn't just a childhood disease, and it isn't caused by sugar, weight, or lifestyle. In this episode, Dr. Komal Patil-Sisodia breaks down why type 1 diabetes is so often missed in adults, especially in people mislabeled as type 2, and introduces LADA (latent autoimmune diabetes in adults), a slow-moving form of type 1 that may account for up to a quarter of adult diagnoses. She walks through the clues that should prompt testing, the two blood tests that can change a diagnosis, and how perimenopause and menopause complicate blood sugar control for women living with type 1. The episode also covers pregnancy planning, the real (and often overstated) genetic risk to children, the underappreciated heart disease risk in women with type 1, and why needing insulin is never a sign of failure.

In This Episode

• Why type 1 diabetes has nothing to do with sugar, weight, or lifestyle
• How adult-onset type 1 gets misdiagnosed as type 2, and why
• LADA (type 1.5): what it is and why it hides in plain sight
• The clues that should prompt a GAD antibody and C-peptide test
• How perimenopause and menopause make blood sugar harder to control
• Pregnancy with type 1 diabetes: what's actually true
• The real genetic risk to children (it's lower than you think)
• Why heart disease risk is elevated and underdiscussed in women with type 1
• Why insulin is not a “last resort” and never a sign you did something wrong
• The technology (CGMs and automated insulin delivery) changing type 1 care

Timestamps:

00:00   Why Type 1 Gets Missed

00:30   A Misdiagnosed Patient Story

02:52   Myth: Sugar Causes Type 1

05:31   Myth: Only Kids Get It

06:29   Adult Onset and the Honeymoon Period

08:41   LADA (Type 1.5) Explained

10:13   Perimenopause Makes It Harder

11:53   When to Test for Type 1

14:34   Pregnancy Myths and Facts

16:41   Heart Risk in Women

18:24   Insulin Shame and Stigma

20:44   Tech That Changed Diabetes Care

22:01   Perimenopause Management Tips

22:49   Key Takeaways and Next Steps

25:14   Final Thoughts and Share

Resources Mentioned:

• GAD antibody test (glutamic acid decarboxylase antibody): the key immune marker for LADA
• C-peptide test: measures how much insulin your body is still producing on its own
• Continuous glucose monitors (CGMs) and automated insulin delivery systems
• Maternal-fetal medicine (perinatology) preconception counseling for planned pregnancies

Disclaimer: 

This podcast is for education, not personalized medical advice. Please discuss anything that resonates with your own healthcare team.

Thanks for listening. Find more info about Clearly Hormonal on the website or Instagram.

Transcript

Dr. Komal Patil-Sisodia 0:01

Welcome to Clearly Hormonal, the podcast where we stop googling our symptoms at midnight and actually start understanding what's going on in our bodies. I'm Dr. Komal Patil-Sisodia, an endocrinologist, internist, obesity medicine specialist, and a Menopause Society certified practitioner, which is really just a whole lot of words to say hormones are kind of my jam. I've spent 17 years watching women try to navigate their hormonal health without ever having been taught the language for what's happening in their own bodies, and then meeting clinicians who want nothing more than to help them figure it out, but are up against 10-minute appointments and a system that just wasn't built for it. This podcast is my answer to that gap. We'll cover menopause, metabolism, hormones, and everything in between with real evidence, not trends, and without the overwhelm. A quick disclaimer. I'm a physician, but this is education, not personalized medical advice. Take what resonates and discuss it with your own healthcare team. Now, let's get into it and talk about what's clearly hormonal and what's not. Type one diabetes is one of the most misunderstood diagnoses in medicine. People think it's a childhood disease. Clinicians miss it in adults, and people in midlife that get labeled as type two will spend years on the wrong treatment. This episode covers how type one diabetes actually works, the adult-onset patterns that get missed, what you need to know about pregnancy and heart health, and how menopause makes all of this more complicated in ways that almost no one talks about. First, I want to start with a story. I saw a patient years ago in her mid-40s who was not overweight. She'd had a diagnosis of type two diabetes for 10 years. She was eating well. She was exercising. She really had no family history of diabetes, and then her blood sugar started creeping up. Everything that she was doing, including the medications and exercising and being super restrictive with her diet, was not working. Her doctor told her that she just needed to work harder, and by the time I saw her, she was so incredibly frustrated with not being able to control her diabetes, and there was a lot of shame and blame that she was taking on herself when really a lot of those things were out of her hands This woman was working out one to two hours a day. She was eating a very healthy diet with lots of vegetables and fiber, and was using fruit sparingly. She was eating a lot of protein. She was cutting out all processed carbs, and her A1C kept getting stuck at eight percent. And the message that she kept receiving from her healthcare team was, "You're not working hard enough. You're not doing enough. You must not be telling the truth. There's something that you're not telling us." And the part that breaks my heart is that she just didn't get the help that she needed, and she spent several years with her diabetes uncontrolled by the time she saw me. And when she walked into my office, one of the most striking things about that encounter was that she had brought a friend, her mother, and both her sisters, because she was feeling so badly and felt so much blame about her diagnosis, that she felt she needed people who had seen the inside part of her life to tell her new doctor how hard she was working. And when we sat and chatted, it became very clear to me that she actually had Type 1 diabetes and not Type 2. And the sad thing is, is that this is not a rare story. It happens all the time, and today we're going to talk about why and what you can do if you think it might be happening to you. And while my podcast is geared mostly towards women's health, there are a lot of good lessons in this episode for anyone, any person who has diabetes. The first myth I want to talk about is that type 1 diabetes is caused by consuming sugar or weight gain Let's start with the most fundamental myth, that type one diabetes is caused by what someone ate or how much they weighed. It isn't, not even a little bit. Here's what type one diabetes actually is. Your immune system is supposed to protect you from things like bacteria and viruses, and it finds things that don't belong in your body, and it attacks them. But in type one diabetes, the immune system makes a mistake. It attacks your own pancreas and it specifically destroys the cells that produce insulin. We call those beta cells. Once those cells are gone, your body can't make insulin anymore, and without insulin, your blood sugar can't get into your cells to give them energy, and that's the disease. It's not because of anything you did or any food you ate or what your lifestyle was like. It's truly your immune system malfunction. That's the disease, and it's caused by a combination of your genes and something in the environment, possibly a virus that triggers the immune system to turn on itself. I'll tell you, in my patients that have autoimmune disease, whether it's thyroid or adrenal or related to the pancreas and causing type one diabetes, I see a profound number of people who have a very stressful event or a big illness happen right before they get diagnosed with type one diabetes or autoimmune disease in general And what's not on that list is what you ate, how much you exercised, or how much you weighed when you were diagnosed. And here's a number that I want you to remember, 90% of people diagnosed with type 1 diabetes have no parent, sibling, or child who has the disease, 90%. This is not something that runs neatly through families, and we're doing more research to figure that out. There is a genetic component to some of the cases, but 90% of them don't have it, and most people who get it have had no one in their family who had it before them. The reason the myth of type 1 diabetes being caused by sugar consumption or weight gain persists is that people don't really know the difference between type 1 and type 2 diabetes. They get it mixed up constantly in the news, in casual conversation, sometimes even in clinical settings. Type 2 does have some lifestyle contributors. Type 1 does not. Applying that story to type 1 diabetes causes a lot of harm and it needs to stop. Type 1 diabetes is the immune system attacking the pancreas. There is no eating history that caused it, and there is no diet that will reverse it. The next myth I want to talk about is that type 1 diabetes only affects children. I think most people have a very specific image in their head when they think about type 1 diabetes, a child who's young and thin, maybe ending up in the hospital, and that image is real. Type 1 diabetes does show up most often in kids and teenagers, but that's not the whole picture. Type 1 diabetes can develop at any age, including your forties or your fifties or older than that. And it's estimated that twenty to twenty-five percent of people who are diagnosed with diabetes in adulthood may actually have type 1 diabetes that is just progressing more slowly. And here's the thing that usually surprises people. More adults are living with type 1 diabetes than children, And that's because people who were diagnosed as kids are now adults living full, long lives with this disease. The majority of people with type 1 now are grown-ups, and we just don't talk about it that way. We still, in our head, try and categorize it as a childhood illness. And when adults develop type 1, it gets misdiagnosed as type 2 all the time. In adults, the immune system sometimes destroys the insulin-producing cells more slowly over months or years instead of weeks. We call that a honeymoon period, where the beta cells in the pancreas are just kinda humming along but slowly declining. And when they stop working to the point where your body can't keep up with keeping your blood sugars normal, that's when it goes into full-blown type 1 diabetes. So it will start with a slowly rising hemoglobin A1c. I see people getting started on diabetes pills that are not really helping their blood sugars, and everyone assumes it's type 2. But the autoimmune attack is still kind of happening the whole time in the background. Clues that you may actually have type 1 diabetes and not type 2 are if you have a normal body weight, meaning you're not struggling with overweight or obesity. If you have another autoimmune condition, that can often be overlooked. The main clues that I see that a person may actually have type 1 instead of type 2 diabetes is if they're not struggling with overweight or obesity and they're diagnosed with diabetes or if they have another autoimmune condition. When you have one autoimmune condition, it increases your lifetime risk of developing another one. And those things often get overlooked, right? Because we're so focused on the glucose levels and the A1C and thinking that everything is lifestyle in adults, we don't sometimes apply that information that it could be type 1 And some of the medications that we use for type 2 diabetes can actually be very harmful for people with type 1, and they can end up in the hospital if they're put on the wrong one So here's what I see. The child with type 1 diabetes is the patient that we were all trained to think has type 1 diabetes. I remember in medical school, that was the thing. Kids get type 1, adults get type 2. But the longer I've practiced and the more data's come out, we know that's not true. The sad part is the middle-aged woman or person with type 1 is the patient we keep missing because we just haven't changed our mindset around that Next, I want to talk about a form of Type 1 diabetes that shows up in adults and moves slowly. It's called LADA, or latent autoimmune diabetes in adults. You might also hear it called type 1.5. And the way it works is the immune system is still attacking the insulin-producing cells, just at a slower pace than in classic type 1. So at first, the blood sugar isn't high enough to need insulin. Pills might even work for a while. But eventually, the immune system wins, the cells are gone, and the person needs insulin, often years after a diagnosis that's said to be type 2, just like the patient I talked about in the intro of this episode. And they say that LADA accounts for somewhere between 2 to 12% of all adult diagnoses, so that's not rare. I've seen studies, that quote it as higher, between 20 to 25%. That's actually a pretty significant number of people, and most of them are currently in a chart somewhere labeled as type 2. And here's why this matters specifically for this audience. LADA will often show up between the ages of 30 and 60, which is exactly the perimenopause window in women. Women with LADA are often at a normal body weight, and they often have other autoimmune conditions. An autoimmune thyroid condition is extremely common in midlife. That combination, a woman in her 40s, normal weight, a history of Hashimoto's thyroiditis, and rising hemoglobin A1c that isn't responding to treatment, that should be like a flashing signal to us all that we need to work people up for type 1 diabetes. And as the hormonal changes of perimenopause start happening, it can make it harder to catch because we know that when estrogen levels drop, estrogen keeps our body sensitive to insulin, so when that goes away, there's a natural insulin resistance that starts developing in women in midlife, and blood sugars can get harder to control, sleep will get disrupted, cortisol will go up, blood sugars get even more hard to control. And a woman who has LADA who was previously managing fine might suddenly seem to get significantly worse, and it gets blamed on menopause or lifestyle when the real issue is her immune system. Interestingly, the patient that I talked about at the beginning of the episode, I caught her before she hit perimenopause, and we got her dialed in on her insulin pump and her CGM, and her blood sugars were very well controlled. She felt like she had control back over her life. But once she hit menopause and her hormone levels dropped significantly, her insulin resistance went through the roof, and everything that we were doing with the insulin pump, it was like history repeating itself for her. She was like, "I swear I'm doing everything, and my sugars are going crazy." She was having very significant hot flashes and night sweats, and her sleep was extremely disrupted. We got her on hormone therapy and saw that her blood sugars came back down very close to what her baseline was. We still had to make some adjustments with her insulin, but the hormone therapy made a pretty significant difference in helping curb her insulin resistance, and also just help her get better sleep and make her cortisol levels probably normalize. So here are signs that we should think about immune testing in adults with diabetes. If there's a normal weight at diagnosis, meaning somebody's BMI, body mass index, is in the normal range, we should think about testing them for type 1, especially if there's no family history. Most people with type 2 diabetes will carry some extra weight, especially around the middle, and if you don't see that in your patient, they deserve a second look to make sure that it's not type 1. The second clue that I see is that diabetes stops responding to pills. All of a sudden, somebody's just trucking along on metformin, and they're doing great, but then their sugar shoots up for no reason. They haven't changed their lifestyle. They haven't changed how much they're moving their body or what they're eating. If that A1C keeps rising, and the pills aren't able to keep it in check, it might be because the insulin-producing cells are being destroyed. I also have patients who are struggling with overweight and obesity and fall into this pattern, right? If someone has other autoimmune conditions like Hashimoto's, rheumatoid arthritis, celiac disease, then your spidey sense needs to go off that, hey, maybe there's type 1 diabetes as well, because autoimmune diseases tend to occur together. And there are two tests that you can do for a patient to help figure out what is going on. One is a C-peptide test. This blood test measures how much insulin your body is still making on its own, and a low or a falling result means that your insulin-producing cells are disappearing, which is pointing towards an autoimmune process. And the way to measure whether there is something autoimmune going on, there is a test called a GAD antibody, glutamic acid decarboxylase antibody, and that is the main immune marker for LADA, or latent autoimmune diabetes of adulthood. It detects whether the immune system has been attacking the pancreas. It's not routinely ordered, but in the scenarios above, it absolutely should be. One more point I want to make is that even if somebody is struggling with overweight or obesity, but they have diabetes that's not responding to pills or autoimmune conditions, they still deserve to be tested for type one diabetes with that C-peptide and GAD antibody. I have seen it affect people who don't fall in that stereotypical normal weight categorization. So keep that in mind. And if you see a woman in her late forties who has Hashimoto's, a rising A1C despite doing everything right, and a normal weight or not a normal weight, someone needs to check a GAD antibody. That is not a complicated ask. That is just pattern recognition There are two things I hear all the time from women with type 1 diabetes, and both of them affect their decisions about having children. First, that it's too dangerous to get pregnant if you have type 1 diabetes. That is not true. With planning, good blood glucose sugar control before and during pregnancy, and a care team that knows what they're doing, women with type 1 can have healthy pregnancies and healthy babies. The technology's also gotten dramatically better. There are now insulin delivery systems that consist of an insulin pump and a continuous glucose monitor. They will detect the blood sugar and adjust insulin automatically, so it's less work burden on the patient, and these have changed what pregnancy with Type 1 diabetes looks like. So the message here isn't, "Don't get pregnant," it's, "Find the right team before you try." I will often send my patients to maternal fetal medicine, which is also known as perinatology, for a preconception counseling visit. They will work very hard with my patients to make sure their blood sugars are at a good preconception goal. It's important to remember that the target ranges for blood sugar control in pregnancy are different and more stringent than in patients who are not pregnant. Having all the help that we can get, getting the right team on board is going to be the most important. The second myth that I hear around having children is that your children will definitely get Type 1 diabetes if you have it. There is a risk, but it's a lot lower than people think. If a parent has Type 1 diabetes, each child has roughly a three to eight percent chance of developing it, compared to less than half a percent in the general population. So that is higher, but it's still a low probability. And remember, ninety percent of people with Type 1 diabetes have no parent or sibling with the disease. The genetic piece is real, but it's complicated, and it's not a predetermined thing for your child if you have Type 1 diabetes. So having Type 1 diabetes does not disqualify you from pregnancy. It means you need a care team that knows what they're doing, and increasingly, a continuous glucose monitor and a good endocrinologist and perinatologist Next, I want to talk about heart disease in type 1 diabetes because I think this risk is seriously underappreciated, especially in women. Adults with type 1 diabetes have two to four times the risk of heart disease compared to people without diabetes, and this isn't something that just shows up in older age. It actually starts building in young adulthood, and it compounds over time. Here's the part that matters specifically for women. In general, women tend to have some natural protection against heart disease before menopause. The hormonal environment of the reproductive years seems to offer some sort of buffer, and for women with type 1 diabetes, that buffer is largely gone. So their risk of heart disease is elevated even in their thirties and forties, decades before most women start thinking about cardiovascular health, and that is due to the higher blood sugars and the effects that they have on the blood vessels over time. But then menopause arrives, and the drop in estrogen that comes with menopause independently raises heart disease risk. So for a woman who's already been living with type 1 for years, these two things stack on top of each other, and we don't have nearly enough research specifically on this combination, but the biology isn't hard to work your way through. What this means in all practical terms is that if you have type 1 diabetes, the conversation about your heart health should not wait until something goes wrong. It should be happening now with your care team, regardless of how young you are and how good you feel. For women with type 1 diabetes entering menopause, the heart health conversation cannot wait. It needs to start now. I want to address one more thing. The idea that needing insulin means your diabetes is severe or that you let things go out of control. This comes up in type two diabetes conversations, but it gets applied to type one diabetes as well, and it doesn't really belong in either place. In type one diabetes, insulin is not a last resort. Insulin is really the only option. The cells your body uses to make insulin are gone, and there's no pill that is going to do what the insulin does. There's no food that replaces it. Insulin is not a sign that things went wrong. It's simply what type one diabetes requires from day one. There's no food plan that replaces it. I hear from so many of my patients who have type one diabetes that they get judged when they order a plate of french fries, and somebody will make some comment that, "Oh, do you really think you should be eating that?" Or cutting them a smaller slice of cake from a birthday cake because they feel like they're helping them by not giving them as much sugar. But the reality is that insulin isn't a sign that things went wrong for this person. It's simply what type one diabetes requires from day one. Patients with type one diabetes need to take insulin in order to cover the carbs that they're eating. Their carbs shouldn't be restricted because that's not really how that disease works. It's a little different from type two, where insulin is one choice among several different treatment options and often comes later in the process. But even with type 2 diabetes, for somebody who gets diagnosed with type 2 diabetes in their thirties or forties and they're now in their eighties, over time, their beta cells are declining. So that's just the nature of the disease. If they need insulin by the time they're eighty, it's because over time, those beta cells have declined. So I think that stereotype around why insulin is needed in type 2 has some unfair assumptions that are made about it. The shame around using insulin in Type 2 diabetes gets unfairly layered onto people with Type 1 diabetes who've never had any other option, and is also unfair to people with Type 2 diabetes because eventually, if they live long enough, their beta cells are going to stop working, and they're going to need insulin. That's just the nature of the disease. Now, on the technology side, there are a few things that I want you to know about because I think they have revolutionized how we treat and manage diabetes. The first is continuous glucose monitors. A continuous glucose monitor is a small sensor that's worn on your body that reads your blood sugar in real time every few minutes and shows you a graph on your phone or a device. So you don't have to check your finger sticks every time you want to know your blood sugars, and you can see how your blood sugar is doing over time, not just where it is right now. And the second thing is an automated insulin delivery system. So this will pair a continuous glucose monitor with an insulin pump. That system reads your blood sugar and automatically adjusts how much insulin you're getting on its own, kind of around the clock, and that's that baseline insulin that we get. You still have to put in how many carbs you're eating and give yourself some insulin for food. But even that is done through pushing buttons on the insulin pump and not actually having to give an additional shot. It's not a perfect replacement for a functioning pancreas, but it's the closest thing we have right now. One thing I want to call out is that access to this technology is sadly not equal across the board. That is a real problem and an advocacy issue that I feel very strongly about and I talk about all the time. And for women who have Type 1 diabetes navigating perimenopause, the hormonal swings of this transition make blood sugar harder to predict and manage. Hot flashes and night sweats will disrupt the sleep, which throws blood sugar off further. Day to day, even hour to hour, things that worked before may stop working the way that they used to. And if that's happening to you, know that is not a failure of your effort, it's your hormones, and your care team needs to know that's part of what you're dealing with. In Type 1 diabetes, insulin is not the last resort treatment. It is the only treatment. And for women who are navigating perimenopause with Type 1, hormonal changes are real, they affect your blood sugar, and your care team needs to understand both sides of that Okay, let's recap for today. Type 1 diabetes is not caused by sugar, food, or weight. It is an immune system disease. The body attacks its own insulin-producing cells. No eating habit caused it, and no diet will fix it. Next, it is not a childhood disease. It can start at any age, including your forties and fifties. More adults are living with type 1 than children, and when it shows up in adults, it gets mistaken for type 2 far more often than most people know. LADA, which is latent autoimmune diabetes in adults, is type 1 that is moving slowly. It may account for twelve percent of all adult diabetes, though I've seen other data that suggests twenty to twenty-five percent. And the signals to look for are normal weight, another autoimmune condition like Hashimoto's, diabetes pills that aren't working the way they should. And if that sounds familiar, ask your doctor for a GAD antibody test and a C-peptide test. Those two tests can change the entire picture. For people considering pregnancy If you have type 1, you can have healthy pregnancies. The technology to support this has never been better. Having type 1 does not mean your children will get it. The chance is 3% to 8%, and that's worth knowing, but it's not a reason to avoid having kids. And lastly Heart health. The risk is real for heart disease. It starts early, and for women with type 1 with natural protection that most women have before menopause Number five, heart health. The risk of heart disease is real, and it starts early. And for women who have type 1, the natural protection that most women have before menopause is mostly gone. The heart health conversation needs to be a key part of your diabetes visits now, not later. And then on insulin, in type 1 diabetes, insulin is not a last resort. It's the only option. It has been the only option since the moment of diagnosis, and there's no failing into insulin in type 1. It's just simply what the disease requires. If you've been told you have type 2 diabetes, but your blood sugar isn't responding the way it should to medications, especially if you're at a normal weight, have a history of autoimmune disease, or just have a feeling that something doesn't quite fit, please ask your doctor for a GAD antibody test and a C-peptide test. It's a reasonable question, and the answer could change everything. And if you have type 1 and you're heading into perimenopause, find an endocrinologist who understands both. That combination of expertise does exist. You deserve to have access to it. If this episode resonated, please share it with someone who has type 1 diabetes and needs to help their friends and family understand what the disease is like. If you know a person in perimenopause who has type 1 diabetes and needs some help navigating that and having that conversation with their healthcare provider, forward them the episode as well thank you so much for joining me, and I will see you all on the next episode