LADA Diabetes Misdiagnosed as Type 2

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Hi!

I was diagnosed with diabetes almost a decade ago. I was 31 years old. I got the classic symptoms of being really thirsty and peeing a lot. I didn’t feel well. I had lost weight and was feeling good about that, though. However, my blood sugar was really high. I went to the doctor, and she prescribed Metformin. I went on a low-carb diet, and the Metformin worked ok for a while, but my numbers never were that great. Then the Metformin stopped working, and I was prescribed other oral medications, which didn’t work. Then I saw an endocrinologist who did autoantibody and C-peptide tests and diagnosed me as LADA, to be treated as Type 1, with insulin.

Insulin really worked well. First, just once a day, then also mealtime insulin. I did MDI for several years, then decided to try an insulin pump. I started on the Medtronic 670G and will upgrade to the Medtronic 780G. I am very proud to have learned how to use an insulin pump. I was initially scared about it, but it’s been a great choice.

I learned that my experience is not rare. It’s estimated that up to 20% of people diagnosed with Type 2 may have LADA, also called Type 1.5. Some consider it a subtype of Type 1. It’s a gradual slow-onset form of diabetes caused by an autoimmune condition. I’ve just completed writing a book about LADA diabetes called “Success with LADA Diabetes: Achieving Optimal Health with Diet, Exercise, and Insulin.” I hope that my experience will help others with similar journeys. It can be really frustrating to not get the correct treatment.

Happy to be part of this community!

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Hi and welcome @LinMay . I’m also LADA, diagnosed at age 48. In my case, thanks to regular monitoring by an endocrinologist I knew I was GAD antibody positive and had low C-peptide for about 6 years before I crossed the “official” diagnosis line at A1C 6.6. I had pushed to get the referral when my A1C was still about 5.5 since there was no reason it should have been even that elevated given my diet and lifestyle. Without the monitoring I would have just seen the A1C creeping slowly up and possibly have been misdiagnosed as Type 2 as well.

The last year and a half before my proper diagnosis I had lost a lot of weight and experienced what in retrospect was frequent urination and hyperglycemic symptoms, but they came on so gradually it was hard to see their severity. (Now of course I recognize I had felt like crap for ages.)

When I was at A1C 6.4 I pushed my endo to let me try Metformin on the chance that it would at least help me use the insulin I was making better. I didn’t notice much of a difference, and when starving myself down to 5.9 got too exhausting I gave up and reached for the insulin. I don’t think that I got any wrong treatment, though I wish that I could have started on insulin even earlier; there was no need for me to hover at 6.4 for a year given that the progression was so clear.

Congrats on finishing the book!

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@LinMay Welcome! Our stories are very similar except mine started in my mid-50s, post retirement from the military, civil service, and contractor roles. Sorry you got hit with the same thing, but glad you found this group. We seem to be a mixed bag of types and backgrounds, but share freely our ideas and treatments for dealing with the problems that seem as individual as we are! Hope you can both contribute to help others and learn from our experiences as well!

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I’m not type 1 but 2, but I know what you mean. I didn’t know how crappy I was feeling until my BG got closer to normal. I had no energy and was doing some incredibly stupid stuff.

I was diagnosed with a fBG of 450mg/dl and HbA1c 14%. It was so high I couldn’t focus clearly.

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I was misdiagnosed for over 8 years. The first couple of years it was your blood sugars can fluctuate, keep exercising, lose weight and eat right. But the thing was I ate a very healthy vegan diet and swam 75 laps a day in a Gym pool… and kept getting worse. First it was metformin which partially worked until they tried to up the dose and I started literally vomiting after I took it. Then they tried various drugs, which worked some but not great, made me sick and I was steadily getting worse.

I had asked my GP if I could be a type 1 as I had had an uncle that was type 1 and at the time was told no, and my doctor told me that the drugs wouldn’t work at all if you were a type 1. But the drugs made me ill in one way or another. I have lots of allergies, but it could be I really needed insulin. I was commonly in the 300’s. I asked a couple of times if I could be a type 1. No, you’re not. She did add Lantus, but no information other than up it 2 units every 2 days until it works. Nothing about hypos or even any other information. I had to even ask how to give myself a shot. Lots of hypos at night.

I was then sent to an endo. I asked the endo if I could be a type 1 and was told no, you are a type 2. I believe because I was overweight I was automatically classified as a type 2. He wanted to put me back on the drugs that had made me sick, by the second visit I refused to go back to him. No one even suggested I should be tested, I didn’t even know tests existed. But I wasn’t going to take the drugs that made my legs swell up or a horrible headache and leg cramps.

I switched doctors and chose an internist hopefully thinking she would know about treatment. I had given up asking if I was a type 1. This was 5 years later, luckily she put me on a fast acting insulin. My numbers came down and I felt much better. But still no direction on taking insulin other than 1 unit per every 3 carbs you eat, Lots and lots of hypos. A nurse I ran across told me to keep oj by the bed. I learned to carry candy with me. My numbers still slowly kept creeping up. I thought I was a type 2, that my body could cope if I skipped a dose. That the new insulin I was switched to dropped me even worse at night so I stopped taking a nightly dose for my bowl of soup. Stupid things, but I didn’t know any better.

As soon as the practice hired a new endo my doctor sent me to her and that endo tested me without me even knowing. The second visit she sat me down and told me you are a type1. High on antibodies and no insulin production. I think she thought I would be really upset, I was happy, not because of being a type 1, but because it explained everything. Things made sense immediately. I then knew I had to have insulin all the time.

I am hoping doctors are more informed, but I don’t count on it. I still run across doctors that think I must have got it as a kid. The certified PT that didn’t have a clue recently that you could get it as an adult. That one is significant because she is skinny and is having BG problems and she is of Scandinavian decent. Not that she couldn’t be a type 2, but at least now she has the knowledge.The chiro about 5 years ago that said I could take an herb to help reverse it, and when I told her, no I have type 1, her reply was but you didn’t get it as a kid. She was a RN for years before becoming a chiro.

I learned so much valuable information from this forum especially, and also from other information on the internet. I was never given any instruction on hypos, dosing changes, or even carb counting etc. By the time I hit the 2nd endo I think it was assumed I knew what I was doing as I had already been on insulin for years. I cleaned up my act pretty fast when I knew I was a type 1. The right diagnosis is really so critical.

I was only properly diagnosed right about 8 years ago. I’ve been a type 1 for 20 years, since I was 46. It was a highly traumatic year. A dog almost died, then another dog did die, then my Father Law died and a month later my Mom died. 3 months later my fasting Bg level was high.

Very very frustrating. I am so thankful to that second endo.

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I guess I was lucky! Lucky? At least as far as diagnosis. I recently and for the first time contracted Covid. A month later when it was discovered that my A1C had leapt from 5.6 to 10.9, I was advised I needed immediate insulin to get my BG into a safe range. After running tests, I was advised I had LADA and would need to be on insulin for the rest of my life. My sudden onset LADA was triggered by Covid! I am 75 years of age, I dived into research and have been able to keep 100% within range of time Clearly though, I am still making a considerable amount of insulin as I do not need to bolus until the evening meal - around 3 units of Humalog and then a bedtime 2 units of Lantus.

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Hi! My LADA journey began after a COVID infection too. In fact, I actually thought I had long COVID. It was 3 months of awful symptoms before I got to the primary care for a blood work-up. At that point my A1C was 14.7 and my BG was 580. Where I feel lucky is that - even though I left the hospital with a T2 diagnosis, the endocrinologist who consults with my doctor’s office ordered the antibody tests at my follow-up so I knew I was T1 very quickly. I am still in my honeymoon period and not on insulin yet. Due to my c-peptide levels, my endocrinologist recently prescribed Januvia and I stopped the Metformin.

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Hello. Would love to read your book. Congratulations. I too was misdiagnosed in my early 50’s. Had just graduated nursing school. I knew I was not a type 2. If I had a honeymoon period, I was not even aware. Finally an endocrinologist diagnosed my correctly two years later. Started on MDI went to pumps for years and two years ago went back to MDI which I find much simpler. Easier to travel. But may go back when the new small pump that can be read from phone is available.

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Interesting hearing about the A1C change and gradual onset of symptoms. I also didn’t recognize the symptoms are first. I was thirsty often but that had become normal feeling.

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I appreciate the wonderful responses I’ve received! It’s genuinely intriguing to read about the experiences of individuals who have developed LADA following their bout with Covid.

Your warm congratulations regarding the completion of my book mean a lot. I’m thrilled to announce that the book is now available on Amazon. I would be immensely grateful for your review if you get the chance to delve into its contents. Even just a few sentences would greatly aid in spreading the word. Thank you once again for your support!

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This is, alas, an all-too common story. My own adult-onset T1 experience is a little different. There was nothing slow about it! It came on after a nasty bout with the flu back in October of 1983, and went from zero to acute symptoms over a period of 6-8 weeks, with dx in early December. Dunno what my actual numbers were, but doc told my wife (I was just turned 28) “You probably saved his life bringing him in today–you likely wouldn’t have been able to wake him up tomorrow morning.”

Here’s the thing: this was back when they hadn’t changed the nomenclature yet, but my doc told me about it. Specifically “they’re going to start calling it Type 1 instead of juvenile because you can get it at any age.” So it says “juvenile type” on my record. But the whole POINT of the new terminology was to break the age-of-onset association for the auto-immune kind. And yet you still get medicos saying “Oh, you can’t have Type 1, you’re too old”!!! Which ends up with people being misdiagnosed and going for years sometimes getting the wrong treatment.

Which again raises the question, Why aren’t GAD/C-peptide testing just a routine part of any diagnosis of an adult presenting with diabetic symptoms? Are they too expensive? Maybe it’s only like 10% of cases but it matters! And given how common these stories are, it’s clear doctors aren’t sufficiently aware that age isn’t determinative for T1 (the whole point of calling it that!), so it shouldn’t be eliminated from consideration when it’s easy enough to test for it. Plus isn’t there evidence that early diagnosis and getting patients on exogenous insulin can slow the progress of beta cell destruction?

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Does anyone know what % of newly diagnosed diabetes patients over 30 turn out to be type 1? My guess is that ti’s a lot less than 10 %, because so many of us late Type 1 folks have the misdiagnosis story.

eta – by which I mean, if it was as much as 10% I would expect that the medical establishment would do what you suggest and automatically have the peptide test. I think I had a peptide test when I was first diagnosed in 2010 and it was inconclusive - and I also had an initial diagnosis of type 2 with rx of metformin + insulin.

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According to this article, nearly 40 percent of adult onset T1s are misdiagnosed and overall adult onset is more common than childhood onset.

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Not only are 40% misdiagnosed at first, I ran across an article that theorizes that there are probably some cases of “type 2’s” for years on insulin that are really type 1’s. Given what I went through and the fact that so many medical personal still think it’s childhood onset I completely believe that.

Given some numbers, 37.3 mil type 2 diabetics in the US. 1.84 mil type 1’s. That means around 736,000 type 1’s (40%) were misdiagnosed at first. If I round out numbers it means roughly 2% of type 2’s turned out to be type 1’s and are misdiagnosed. Correct me if I’m wrong!

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When in doubt, request a c-peptide test. That will identify if someone is a T1D or a T2D.

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this happened to me. the misdiagnosis. why wouldnt this be a routine test before diagnosis?

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It should be, a C-Peptide should be done at the minimum if a fast BG is in the diabetic range. If high would show high insulin resistance (T2DM) if low possible (T1DM) calling for an antibody panel test.

The problem is as I posted above, that many doctors assume that T1DM begins in childhood/youth while T2DM is adult onset. It is hard to get them to let go of old outdated training.

And the early stages of LADA T1DM can look a lot like T2DM.

Part of the problem may be insurance coverage of the needed tests.

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Could it be that the GP that most people see are terrible at Diabetes in general. Not just whether a adult is type 1 or 2. I never see the same GP more than s couple times anyway. In my neck of the woods they move jobs often. I’ve had 4 in 5 years.

I have a couple type 2 friends that are not as fortunate as I am to have a endo. When they describe how high their A1Cs are allowed to get with only being prescribed metformin I am scared for their health. I think maybe everyone is getting poor treatment not just us.

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@Josie I think the problem is trying to maintain currency in an age of exponential knowledge/treatment growth. While I bemoan the “specialization” of doctors, the reality is it’s hard to keep up with the growth factor. I liken it to my own experience with computers, 30 years ago, I was the goto guy for questions on the topic; 10 years later it got hard to stay up to speed, I found myself saying “I don’t know” or having to look things up, these days its almost impossible. I think doctors have the same issue and a PCP/GP, like most people, fall back on what they learned 10-30+ years ago (hardly current) or what they’ve run into recently. So my PCP (GP), not having experienced a T1 (LADA), relied on his training and knowledge that an old person with high BG was T2, not T1, and I (others) pay the consequences. He now knows and will not likely make the same error again. YES, there should be and is required annual update training, but they fit the required “hours” of training in to the rest of their life with a spouse, two kids, their dog, their house work, etc., etc. I don’t say this to EXCUSE the lack of knowledge (it took 8 years for my PCP to say “Hey, you might be one of these T1(LADA) types…” when oral meds quit working), rather we need to frame the problem so a reasonable solution can be found. Perhaps if the medical community were faster to adopt “current” thought it would be better, but that has its downside risk of being wrong as well.

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BTW, I should also say I’m thankful for groups like FUD that don’t hesitate to explore the “bleeding edge” of an issue and at least discuss, if not practice, what’s possible! Thanks to all the folks here that have shared, questioned, and answered the questions of the day…both the mundane and experimental.

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