Seeking stories of misdiagnosis

I came across TUdiabetes about eight months ago when I was looking to understand diabetes and why I had it. With the help of my online friends, I learned that I was right to question my diagnosis. In the end, I was correctly diagnosed with LADA and I’ve been living on insulin happily ever since.

But this story does not have a happy ending because through TU I’ve met so many diabetics from all across the world who have been misdiagnosed or who question their diagnosis and are perhaps not receiving proper treatment.

This phenomenon is something I believe leaders in the diabetes community need to be aware of and need to address. I’m appealing to you to share your stories of misdiagnosis in an effort to show that this problem is widespread.

If you’ve been misdiagnosed or you question your diagnosis, please share your story here. It can be as brief or descriptive as you’d like. You don’t have to identify yourself, but I would like you to at least say what state or province you’re from and what country. If you’ve already told your story on another discussion thread or on your profile, please cut and paste it here. I’m interested in any story of misdiagnosis you’ve had (e.g., Type 2 to LADA, gestational to Type 2, Type 2 to MODY).

I’m hoping to collect at least 50 stories that I can send to these organizations to draw attention to this issue.

I’ll go, as my misdiagnosis is literally 2 weeks old. I started out diagnosed as Type 2 at age 20. I then saw a specialist who diagnosed me as MODY (type 1.5). I then went to a CDE in the same office who told me I was Type 2 and then later said I was Type 1 with Insulin Resistance. I asked for Metformin and after lab work she said I was producing NO insulin and oral medications would do nothing for me. For the last 3 years I’ve been taking over 400 units of Humalog daily by 14-16 shots a day until 2 weeks ago I saw a new endocrinologist, who said I was Type 2 and put me back on Metformin. In 2 weeks I’ve gone from 400 units of insulin DAILY to about 60 units a WEEK. I’m still working this out, but I’d say there is some serious mis-communication going on there.

Have any of these people bothered doing labwork?

I think our bodies change. What may be true at one point is not accurate at another. And they change with management, too.
I diagnosed myself as diabetic with need for insulin (above 350 when I ate a piece of fruit). It was enough of a diagnosis for me to go to the doctor and plead for insulin. The doctor I went to thought I was Type 2 - for a month. Metformin, meanwhile, didn’t work and I had a GI reaction. My initial management diagnosis had been correct. And I had some insulin resistance in there. I had arthritis at the time and a bit of Sjogrens.
I think there are management diagnoses and then there are the physiological diagnoses by which which we try to explain what’s happening. In the beginning of an adult onset, the pancreas can be spitting out spurts of insulin, and the diagnosis is pending.
What works over time and what shows itself over time allows one to say yes, I’m LADA. I have these other manifestations. I’m Type 1 with autoimmunity. But when I get down the carbs so there’s never a spike over 140, for me, there are no more autoimmunity manifestations, no Sjogrens symptoms, and I’m just a regular Type 1. No frills. Ask me next week!!!
And did the doctor do lab work? Only fasting BS and A1c. It was enough for me.


Good on ya!

I have been simply amazed and angered over the number of people on TU that were mis-diagnosed. I wasn’t, but that was almost 37 years ago and I assumed that with the increased #s of diabetics over the years that doctors would have it figured out by now (yeah, I know “assume” makes an ass out of u and me…)

Who are you going to contact once you have your 50?

Fair Winds,

Just call me Miss Misdiagnosis.

33 years as a T2 only to find I’m LADA. Don’t ask how long it took me to get them to test me for LADA. I did, however, get an apology from the Endo, who said I’d been right all along. This was the same one who for 3 years said, “Impossible! You’re a T2!”. All I wanted was an insulin pump with subsidized supplies (Australia), which I got because I’m now classified as T1.

It had been yet another long and frustrating medical adventure to get tested for LADA, and when I got the results, all I wanted to do was to slap someone REALLY hard.

Add another 8 years of “it’s all in your head”, until I got a Lupus & Fibromyalgia diagnosis from a Rheumatologist who said she didn’t understand why the first two didn’t get the Lupus because my blood tests were off from the get go.

I’ve got stories like this that would fill a book!

I truly hate most doctors and rarely bother going these days unless it’s for a script or if I’m half dead from something. Is it any wonder? The hour or so docs get at medical school on diabetes is shameful! On the other hand, my docs now know that when they are absolutely sure it’s T2, it isn’t always!

I was misdiagnosed as having Type 2 diabetes, when in fact I have Type 1 diabetes. In early 1995, I had two back-to-back colds and never really recovered. I was 35 years old, and a life-long athlete. I was losing weight, eating a lot, peeing a lot, and was extraordinarily fatigued. I tried to make an appointment with my doctor and the earliest appointment they would give me was one month out. I kept calling to see if I could be fit in, if there was a cancellation, to no avail. Finally, my weight loss was so extreme (I was losing 3 pounds a day at that point) that a co-worker insisted I get help immediately. I went to my doctor without an appointment, and my doctor’s nurse told me I had diabetes and told me about the progress in the treatment of Type 1 diabetes. When my blood test results came in, 619 mg/dl, I was told to go to the hospital immediately (in Walnut Creek, California, USA). It was there that my problems with misdiagnosis began. After hydration, I was given IV insulin. My blood sugar came down so quickly (I am and always have been extremely insulin sensitive) that they had to give me IV glucose. I briefly went into DKA in the hospital. I was seen by an endocrinologist who was a medical school professor at University of California San Francisco. Although he said I was in the “gray area” of diabetes type, in my chart he put NIDDM (non insulin dependent diabetes mellitus, now called Type 2 diabetes), took me off of exogenous insulin, and discharged me from the hospital with a prescription for glyburide. I was sent to Type 2 diabetes education classes. The nutritionist I saw said that glyburide didn’t usually work on someone as thin as me, but she didn’t explain why not. I read everything I could about diabetes, and it was very clear that I didn’t fit the description for someone with Type 2 diabetes but that I did fit the description for Type 1 diabetes. I spoke with the endo about it. The glyburide had no effect and my blood sugar was extremely high. One week after I was hospitalized, I had an appointment with my endo and angrily confronted him and told him I believed I had been misdiagnosed. After some heated discussion, he agreed that in fact I did have Type 1 diabetes and he prescribed insulin therapy. I later confronted the CDE and nutritionist that I had seen during the week of misdiagnosis, and they basically said they knew I had Type 1 but wouldn’t disagree with the endo. I was upset that I had not been given appropriate treatment, but thankful that it was only one week that I was misdiagnosed. Since that time, I have met MANY MANY people in the same situation–they were misdiagnosed as having Type 2 strictly because they were adults, when in fact they had Type 1. For a number of the people I have met, the misdiagnosis had severe impacts on their health and resulted in rapid onset of complications. The diabetes medical community clings to the myth that Type 1 diabetes is a childhood disease, and many people are misdiagnosed as a result of the medical community’s deeply flawed approach to diagnosing and treating those with adult-onset Type 1 diabetes.

From the moment I stepped in the door with a fasting of 353 the physician’s assistant kept saying “You don’t fit the profile for Type 2 but that’s what we will call you for now.” Took Metformin over the week-end and by Monday was put on Lantus and Humalog. I was of course extremely sensitive to insulin. After 6 weeks I took myself off Metformin with no difference in Bgs. Shortly after that the doc got my CPeptide and GAD results and I was rediagnosed as a Type 1. Which I knew I was all along.

I’m a LADA, just diagnosed a little over a year ago at age 42. My fasting glucose levels (140) tipped off my general practitioner in a routine checkup. I was in the normal weight range, but have a family history of type 2, so he made the reasonable assumption that I was type 2. To his great credit, however, he referred me on to a endocrinologist to confirm an actual diagnosis based on GAD-A antibody and c-peptide lab tests before prescribing any medications. High antibodies and low c-peptides confirmed that I was actually a LADA type 1 rather than type 2, and I started on insulin right away.

Thirteen months later I am still only injecting a single 18 unit dose of Lantus, eating a low-carb diet, and getting regular excercise to maintain an A1C of 6.3. My “honeymoon” period has been so long and so stable that I am beginning to wonder if I was really misdiagnosed the other way - but then again, the lab test results were very conclusive.

Anyway, I have learned from this website that I am truly one of the fortunate ones in getting the correct diagnosis right out of the gate. It is absolutely infuriating that people have to beg, pleed, and cajole their doctors into giving them a simple lab test to confirm a diagnosis. I am amazed that it isn’t a standard practice to administer lab tests for antibodies on every newly diagnosed hyper-glycemic in order to get the treatment to match the actual problem.


Thank you for doing this!!! I think its awful that so many people are misdiagnosed!!! I have met so many other people in these last few months that have the SAME story!!! I wish more people would challenge their doctors…GO with your GUT I say!!!

I am going to be 35 in a month and in Nov. 09 I decided it was time to go to doctor because I lost a lot of weight and was thirsty all the time, and I had gestational diabetes. I new something was wrong. I had strips and a meter from my pregnancy 3 years ago. So, early in Nov. I did a fasting test and it was 351. I called my GP, he made me come in that day. He diagnosed me with diabetes. Gave me info on type 2, but did not classify me. Had my blood work done, and had and A1C of 12.8. My triglycerides were right below normal…I have a family history of high cholesterol, and my GP kept saying…YOUR triglycerides are soo low…hmmm, my blood pressure is perfect. I have a family history of type 2…pasta and bread eating Italian father.
When I was in for my test results, I told my doctor I wanted to know my type…so he said type 2! So I went to the internet and began my research on type 2. I just DID NOT fit that profile. I had heard and been told by many people on Diabetic forums that “type 2’s CAN be THIN”…it just did not add up. I did not have poor blood pressure, or high triglycerides and I was not overweight…I have been thin my whole life except during my child bearing years( I only have 2 kids). The metformin did NOT work. I was put on Lantus with a hope from my doctor I could be on it for a month!!! Well I found out through my D research about Lada or type 1.5, and saw I needed a GAD test to prove my own diagnosis. SO…I asked my doctor for it…he refused. Then and there I decided I needed to go see another doctor. I could not get into the endo until a month later. I NEEDED to KNOW if my GAD test was positive and if I WAS RIGHT…so I ordered the test online and went to a local labcorp . I tested HIGH positive at 84.5 for it…
My endo is wonderful. She listened to me…she diagnosed me with type 1.5 or even type 1…it does not matter if it 1 or 1.5 because the treatments are the same. I am now on humalog so I can EAT again…I am not happy eating protein and veggies for the rest of my life…I like a little more variety!!

Please feel free to use my story and contact me if you need other info…

Korinne from NC

I was diagnosed 3 years ago. I had been hypothyroid for a couple of years. After my meds were adjusted correctly I still felt tired all the time. Then I suddenly developed high blood pressure and my doctor ordered a bunch of tests. My A1C was 7.2. She told me I had Type 2 diabetes and I started testing and counting carbs. The dietician told me to do 16 carb exchanges a day and test after 2 hours and my numbers were great. The endo I saw told me I didn’t have diabetes, or even impaired glucose tolerance because my fasting and 2 hour numbers were really low. But I still felt terrible, had no energy and was thirsty all the time. I started testing at an hour and found that my BG would shoot up to 200 and then crash back down to 80 and it was the spiking that was making me feel bad. Extreme low carb dieting kept my numbers steady but I kept losing more and more weight. My doctor wanted me to take Januvia, but I did my own research online and persuaded her to order the antibody tests. She had never heard of LADA but sure enough, I was positive for islet cell antibodies. I found a new endo and started on insulin. I still have a good second phase release, still honeymooning after 3 years. But if I had not found tudiabetes I don’t think I would have ended up with the correct diagnosis of LADA.

I’ve been waivering on telling my story. The reason? I still don’t have a diagnosis. Here is my saga.

Diagnosed t2 in 2005, I had a HbA1c of 8% and had apparently had blood sugars (for several years) above 126 mg/dl. I had always been thin, weighing 150-160 at 5’11" in college. I had crept up to 205 lbs by the time I was diagnosed. Through changes in diet, exercise and metformin I was able to bring my HbA1c down to an amazing 5.7%. I weighed 175lbs and I started weight training. My fasting numbers were still elevated and about 6-9 months after diagnosis, I started Dr. B’s diet. Those days, were essentially the best blood sugars I would see. My HbA1c crept up into the 6s. I stopped metformin in the next year and restarted 6 months later. Metformin had no effect on my blood sugar, either HbA1c or readings. I continued weight training, gaining muscle and losing fat. In 2008, with my HbA1c still in the low 6s, I did the metformin experiment again, 6 months on, then going off. Metformin had no effect. I started asking for tests. I asked for c-peptide and I asked for antibody tests. I then tried Byetta alone, same thing, no improvement. Repeating my requests for tests at every visit after about a year I was granted a c-peptide. My c-peptide came in at 1.8 ng/ml, within reference range, but low and coupled with my fasting blood sugar of 130 mg/dl, a sign that even I knew signaled insulin deficiency. I was told the test said nothing. Despite my efforts, I also started to have a some emerging complications, particularly some peripheral neuropathy in my hands. I started asking for antibody tests and insulin. After the third visit with my repeated requests my doctor finally told me to either go see another endo or a psychiatrist (did I mention I am a difficult patient).

So in mid 2009, I started visiting a new endo. I selected one who seemed to have good credentials. At my first visit it seemed encouraging. He did agree that my blood sugars were too high (fasting 120-140 mg/dl). and my medications were not working. He did not feel that my c-peptide meant anything and was reluctant to conduct further tests. So we started escalating my medications. First adding back metformin to my Byetta. I had some initial success, for about 2-3 weeks my blood sugars improved. Then about a month later I had another bout of improved blood sugars again for about 2 weeks. This was enough to drop my HbA1c 0.4% at my next visit. Seemingly happy days. But except for those two short “honeymoons” my blood sugar was unchanged. On my next visit, no honeymoons, my HbA1c was right back where we started. So we increased my medication and finally after two years, my endo has requested a GAD. The increased medication has improved my blood sugars. I have the GAD test taken in two weeks and we shall see.

In my case, I had always been thin. I had gained weight before my formal diagnosis, but since then I have made major changes. I have lost significant fat and gained more than 40lbs of muscle. My waist is actually smaller than when I weighed 175, but I now weigh 202 at about 15% bodyfat. In truth, some of my adventures have been complicated by my actions, following a very strict diet and being aggressive about exercise have problably masked my condition, kept me from losing control and ending up in the ER in DKA.

I accepted my condition a long time ago. Whether or not I end up antibody positive and a T1, I’ll be going on insulin in not too long and that is fine. Perhaps I should have taken control of the situation some time ago, ordered my own test (I can do that) and just marched right down to Walmart and gotten my own insulin. But this has become more than just a question of my treatment. I want my doctors to do their d*mn job. They have displayed continued incompetence and it really irks me. I want to make force them do their job so that others don’t have to spend years like I have.

bsc-- thanks for sharing your story. I’m glad that someone pointed out that our pancreas can work in spurts or “honeymoons” and it often masks our true condition. I understand the catch you’re in: you want to help yourself but you need to show your doctors how bad you are. I think you made a good decision to take care of yourself first.

I think this has been said before, but for other TUers who are curious – Metformin reaches its peak effectiveness in two weeks. It is not something that needs to build up in your body.

I’ve often wondered if one of the reasons they don’t do these necessary tests, is because of insurance company constraints – now telling doctors ‘you can’t do test such and such’ and limiting what they can and cannot order, without huge justifications. There was a story on this, on 60 Minutes, I think… Doctors pissed because they were having a hard time doing tests for people, because of insurance companies curtailing everything… and making them have to call, all the time, asking for permission, before they do anything…

I don’t have insurance and my first doctor still refused the GAD 65 test!!! That was what ultimately diagnosed me with LADA!!! I understand the insurance company thing…but it still lies in the hands of the doc’s. I would have paid for it out of pocket if I had insurance and they denied it…I think we each need to FIGHT for what we need…whether its fighting your doctor or insurance companies!!!

Yes, I agree… I don’t have insurance either, and the volunteer medical clinic I visit, gets donations… so they really argue with me a lot over any exams… :confused: It’s rough.

I’m sure you are right, Lizmari about tests and insurance companies. This is one of the examples of health care craziness in the U.S.

My story: I had been treated for hyperthyroidism for 13 years (had my thyroid destroyed by radiation and took thyroid replacement meds). I started having diabetes symptoms in 2007 when I was 58: Increased thirst and urination especially at night, fatigue and weight loss. Weight loss was something I couldn’t achieve for the life of me at my age by dieting so I knew something was up with that. I knew the other things were sx of diabetes so I called my dr and asked for a glucose test; my grandmother had had diabetes (I assume type 2 but don’t know for sure, she died many years ago). My fasting blood sugar was 325 and I was diagnosed with diabetes. I’m not sure if they actually said “type 2” but that is what they treated me for. It was a bit of a blur because I was retiring and moving to Guatemala in two months. (I was diagnosed in Redding, California). I started on oral meds and my numbers came down. I didn’t change my diet because I am in recovery from an eating disorder and figured I ate pretty healthy, but I am a vegetarian and ate a lot of pasta. I was on, I believe three different meds and tested twice a day and my numbers were good. After diagnosis I continued to lose weight, about 2 pounds a week despite eating normally. I had been about 40 pounds overweight initially, maybe down to 20 overweight at diagnosis; I lost the full 40 pounds to get to an ideal weight for me.

Fast forward to about September 2008. My numbers started going up, slowly but steadily. I ignored it for a couple months but then they started getting quite high. My Guatemalan PCP tried me on different oral meds (I spent a fortune because living out of country my insurance didn’t pay for it all). My numbers still went up. Around January 2009 I realized I needed to go on insulin. What I didn’t get was WHY! I had read it took 10-15 years for a type 2 diabetic to progress to needing insulin. Why was it happening to me after a year and a half? My doctor started me on what he thought was a good dosage of Lantus for a Type 2, 25 units at night and it was a disaster. I would be low in the morning and before meals (as low as 30s and 40s), then still high post prandial.

Something was not making sense. At first I thought my thyroid was affecting my diabetes, but after some research learned it would only do this if it was unstable and my TSH was fine. I had a diabetes book that was about 15 years old. It didn’t mention LADA at all, but did have a chart listing characteristics of Type 1 and Type 2. I was astonished to see I sounded more like type 1. It mentioned some people were diagnosed Type 1 as adults. I got online and started to do LOTS of research including joining this and another site. I read about LADA and little by little became absolutely convinced I was LADA. I did a C-peptide (in Guatemala you can just go to a lab and request any test they know how to do). It was .38…very low. They didn’t do GAD in Guatemala. I finally went to see an endo in Guatemala City, really just to confirm what I already knew. She had never heard of LADA (but was very interested!). I presented her with a list I’d made of five factors I knew made me LADA: 1) Weight Loss, 2) Another autoimmune condition (thyroid), 3) Needing insulin in such a short time, 4) Insulin sensitive, 5) Low c-peptide. She simply said, “You are Type 1” and started me on the right basal/bolus regimen. In the year since then I have had to increase my insulin a bit and my numbers are good.

I have insurance and actually researched the policy guidelines for my carrier. My carrier considers it covered: “Aetna considers measurement of autoantibodies to GAD medically necessary for distinguishing type 1 from type 2 diabetes when the clinical history is ambiguous and the results of testing will influence patient management.” In truth, there have been two things fighting against proper diagnosis. First, many, if not most doctors are not competent to use c-peptide and antibodies to differentially diagnose t1 and t2. Second, most doctors don’t actually want to be the deciding authority for prescribing insulin, it places them in a position or liability risk if something goes wrong. If you come back a couple years later with complications, nobody can “blame” them for a bad medical decision. So they just play it safe.

Way to go Kady on ordering your own test. Myself, I know I can do the same, but I want rub my doctors nose in it and make them eat their words.

I guess… I’m kind of a mean woman. Hot tempered latina. lol I would’ve taken that tidbit of information, marched to my doctors office, and armed with it… demanded testing. heh lol

I think it’s the case in other countries, where insurance isn’t such a problem, that doctors are just beginning to see that LADA isn’t all that rare. Generally I’m led to believe that there has been a dramatic increase in autoimmune diseases of all sorts, as well as asthmas and allergies. On top of genetics, it’s the belief that we also need some trigger for an autoimmune disease. We don’t exactly know what that trigger is for most autoimmune conditions.

I’m not so sure that 50 years ago, adults being diagnosed with T1 wasn’t much more rare than it is today. Has that trigger somehow increased over the years? Have genetics played a part - parents with those genes having children with those genes - an exponential growth?

I think the medical community, especially older doctors, are only beginning to come to terms with this increase of certain conditions. It used to be so cut and dried, If you were a kid you had T1, if you were over 40 you had T2, and there wasn’t much in between other than gestational diabetes. When I was diagnosed in 1978, LADA hadn’t been ‘discovered’ and there wasn’t a test for it. I was T2 and that’s all there was to it. My question was always - T2 at 25? No one could explain it. Yet it looked a little like T2 back then.

I honeymooned for nearly 20 years (other than during my one pregnancy) before needing oral meds. Then it took another 8 years to need insulin.

There was even a time after the first year, that I was on no medication, ate whatever I wanted and had no measurable diabetes for several years until I fell pregnant. Far as I know, that’s pretty unusual. Even the first year after pregnancy, the diabetes appeared to go away. During that time I got Lupus (autoimmune). Who knows what I had all those years! Who knows whether LADA appeared the same time as Lupus or had always been there. And even then, It was one very long honeymoon before insulin! My c-peptide remained in the normal range for a very long time.

Considering there are now so many variants of diabetes, maybe one day I’ll fall into yet another new category of diabetes.

As far as doctors are concerned, Kelly is right in wanting to raise awareness. I really believe that what has happened to all of us is that doctors just don’t know how common LADA is. Couple that with the old fashioned “kid=T1, over 40=T2”, and you have exactly what we have here - lots of resistance by some of the medical community to consider the ‘new’ possibilities of diagnosis.