A Field Guide to Identifying the Misdiagnosed Type 1 Diabetic

They are adults who come in droves to the diabetes online community; they write about how they are puzzled how they got Type 2 diabetes, when they are young and thin and athletic[1]. Sometimes they are middle-aged and no longer at fighting weight. Sometimes they are older. They have been given Type 2 oral medications to control their blood sugar, but the oral meds are not working despite a very low carbohydrate diet and lots of exercise. They may mention that they have autoimmune diseases such as Hashimoto’s Disease (hypothyroidism) or celiac disease, and that autoimmune diseases run in their families, and that their grandmother/fill-in-the-blank had Type 1 diabetes. They may mention that they had gestational diabetes that had to be treated with insulin. Their health is deteriorating, but their doctors just insist that they are not correctly following the doctor’s prescribed program. Before there was a diabetes online community, I met these same people (people with diabetes or PWDs) at other diabetes-related events. Some of them already had serious complications. Who are these people and what is going on?

Who are these people? These people are misdiagnosed Type 1 diabetics. They have been misdiagnosed as having Type 2 diabetes, when in fact they typically have Type 1 autoimmune diabetes (sometimes called LADA (latent autoimmune diabetes in adults) or Type 1.5). But because they are adults, and because doctors have bought into the myth of Type 1 being a childhood disease, they have been given a Type 2 diagnosis strictly because of age not etiology. And it is not just people with slow-onset Type 1 diabetes who are misdiagnosed: even adults with rapid-onset Type 1 diabetes presenting in diabetic ketoacidosis (DKA) get misdiagnosed. Type 1 diabetes and Type 2 diabetes are completely different diseases, with different genetics, causes, treatments, and cures. The high blood sugars that result from trying and failing with pills for Type 2 diabetes, on a person who in fact has Type 1 diabetes, causes agony and suffering, not to mention hastening the complications of diabetes.

What is going on? Against all scientific evidence, many doctors insist on diagnosing an adult as having Type 2 diabetes when simple and relatively inexpensive testing (antibody testing (GADA, ICA, IA-2) at full price $471) could give a definitive diagnosis. We are not talking about one incompetent doctor, one bad seed, who is misdiagnosing PWDs, we are talking about many doctors throughout the world.

Why do doctors and the medical community cling to the myth of Type 1 diabetes being a childhood disease, despite all evidence to the contrary, and despite the fact that misdiagnosis results in horrific suffering and terrible outcomes for human beings who could thrive if given the correct treatment? What happened to the Hippocratic Oath (“First do no harm”)? This is a question for a psychologist to answer, since the doctors are acting in opposition to all scientific and medical evidence. However, we do know that scientific communities can be surprisingly resistant to new ideas or data that do not fit the accepted model, in this case the “juvenile diabetes” model. And here we are not talking about just a few people with adult-onset Type 1 diabetes, we are talking about two to three times the number of people with childhood-onset Type 1 diabetes[2].

Organizations such as the American Diabetes Association (ADA) remain part of the problem of the entrenchment of the myth that Type 1 diabetes is a childhood disease. In the United States, ADA is the "go to" place when people want information on diabetes, including the mainstream media. A prime example of the way that ADA does a terrible disservice to people with adult-onset Type 1 diabetes was the cover story of the September 2006 issue of ADA’s Diabetes Forecast. Grammy award winning guitarist Michael Ward was profiled, diagnosed as an adult with Type 2 diabetes. The article author and the Diabetes Forecast reviewers did not catch the fact that Michael Ward has Type 1 diabetes and was misdiagnosed and was receiving incorrect treatment (it was easy to catch based on things that Michael said in the interview). It took Diabetes Forecast readers, in letters to the editor, to point out the obvious. A person with Type 1 diabetes who worked for ADA for 12 years wrote to me, “Type I diabetes is the same in adults as it is in kids and, because it more commonly occurs in kids, used to be called "juvenile diabetes". In the scheme of things there are relatively few people with adult onset type 1 diabetes. The American Diabetes Association is a very reputable organization and only embraces information and treatments that have been proven by stellar research or have been scrutinized and agreed upon by panels of the country's top diabetes specialists (sometimes including international specialists).”

If the diabetes online community can figure out what is going on and can help get people correctly diagnosed and correctly treated with insulin therapy, why can’t the medical community? What is holding doctors back?

[1] Not all people with adult-onset Type 1 diabetes are young adults, Caucasian, thin, and athletic. Those are just the people that are easier to identify. Adult-onset Type 1 diabetes affects people of all ages, ethnicities, weights, and athletic abilities.

[2] Type 1 Diabetes in Adults: Principles and Practice (Informa Healthcare, 2008), page 27.

I was diagnosed as a T2 at 26 I had a beer gut for a while but had burned that off by running and by the time I was diagnosed I could run fast enough to match my times from high school. I’ve been on oral meds for about 10 years and my a1cs have been below 7.5 for most of that time and for the last 3-4years it has been below 7.0. I still believe I’m a T2 - you;re thouhts?

While I think the ADA certainly could do better, given the ADA’s rather dismal track record, I don’t have very high expectations. I do however expect better from endochronologists, and in particular from the American Association of Endochronologists (AACE). They certainly should be able to get it right (http://www.aace.com/pub/pdf/guidelines/DMGuidelines2007.pdf). And while they do recognize that the autoantibody tests you highlight (GADA, ICA, IA-2) are part of the classification of type 1, the guidelines are an utter failure in terms of helping diagnosis. In fact, if you look closely, the AACE DOES NOT DEFINE ANY diagnostic criteria for type 1 diabetes. So I guess they just drop out of the sky full formed. Only the ER has the expertise to diagnose them.

What it will really take is a champion from the inside. I don’t know if you have ever visited endotext.org, but it has some really good information. If you read the section on Classification and Diagnosis of DM by Reasner and DeFronzo, you will clearly see that they suggest the use of antibodies for diagnosis. DeFronzo also in particular is an advocate of early insulin use in to preserve beta cell function.

Part of what would really help is assembling a diagnostic guideline that is based on the medical authorities. The pieces are all there, but none of the groups has bellied up to the bar to say it all in one place.

But we must understand, that while the antibody tests (GADA, ICA, IA-2) do indicate an autoimmunity issue, the occurence of a single antibody represents only a 20% risk of progressing to diabetes. So the progression to type 1 involves certain loss of insulin production as well. And I have also had great difficulty in getting appropriate insulin measurements. What does a low c-peptide mean? And how do you interpret it in light of a blood sugar value? How do you estimate remaining beta cell function? Do you use a HOMA calculator?

Like you, I have been woefully dissappointed in the medical system. It is very clear that I have never seen a Dr. House. My doctors for the most part have been barely competent enough to properly interpret a blood sugar reading. My endos while seemingly competent, only want to deal with extremes. You only get action if you present with a serious case. In my ideal world, every GP and internist would understand the basics of performing at least a triage to identify patients with suspected diabetes who may have type 1 and to either diagnose them properly or refer them to medical specialists who can. I am certainly not going to hold my breath.

Hi Brian–I did not know about endotext.org, thank you for pointing me to that. A lot of that website’s information comes from the Barbara Davis Center, and they have an online diabetes book that is excellent (Chapter 11 is the reference I use). AACE’s guidelines are shockingly deficient. No mention of autoimmune gestational diabetes, same old 5-10% are Type 1s (oops, forgot all those adults, we just aren’t cute), and as you say, no criteria for diagnosing Type 1 and distinguishing it from Type 2. Although antibodies can be useful prior to diagnosis, I always suggest people get tested after they have been diagnosed because if you are antibody-positive you have T1, and GADA especially persists. As for a champion on the inside, I just don’t know one. I have been trying several avenues, and Steve Edelman of TCOYD is an advocate. Dr. Edelman helped JDRF with the new toolkit for adult T1s. With doctors, I have been more fortunate than you. My first endo, who diagnosed me in the hospital, did initially misdiagnose but had the guts to apologize one week later and correctly diagnose me. He actually is a talented UCSF prof. My current endo is great. But I am pretty low maintenance, as I am diligent with my self-care and oh I am grateful to be a scientist because this is a live experiment.

Melitta, I thank you for your efforts. Although I know we have been generally pleased with the JDRF, even they are still sort of stumbling. The guest post by Marie Nierras of JDRF over at diabetesmine (http://www.diabetesmine.com/2010/03/clarifying-lada-type-1-diabetes-in-adults.html) supports appropriate diagnosis and treatment of LADA and certain supports our position, is still a bit confusing on the whole issue. I am torn between quibbling with the article, supporting it or letting it sit. For now, I’ll let it sit.

I know in my case my self-care has hindered a quick diagnosis even if it has prolonged my poor pooped out beta cells. What doctor would think a HbA1c of 6.5% is bad (except I eat Bernsteins 6-12-12, oral meds like metformin have no effect and I am lean and muscular)?

Hi Brian: I actually have been displeased with JDRF for years, and it is only recently that they have begun making changes and acknowledging the prevalence of T1 in adults and that my attitude towards them has improved. I had not read that DiabetesMine post. You are right, there is good stuff there about how to get an appropriate diagnosis and treatment. However, I do really get tired of this “oh LADA is different than T1 because of the slower onset.” But they don’t mention that a 1-year-old has a MUCH more rapid onset than a 15 year old. People just get irrational and apoplectic when you suggest that LADAs are T1s (let’s see, immune-mediated diabetes = immune-mediated diabetes). I had rapid onset, so that wasn’t really an issue. As for your situation, it really is sad that your excellent self-care has resulted in poor quality health care. As for my efforts, they aren’t as skilled and systematic as they could be–I just haven’t been able to get any “insider” (who could really effect change) to seriously care. I just figure this will take the rest of my life, and I can outlast the bas****s.

Melitta – have you sent letters to these organizations? I’ve been writing to the Canadian Diabetes Association and the Alberta Diabetes Research Foundation. I’m willing to support your efforts to get the message in the United States as well if you’d like.

btw – I’m really happy with the story by Marie Nierras. It hit all of my points, except that I was 29 when I was diagnosed.

From what I've read in various places, a certain percentage of people (not blacks or Asians with Type 1b) who present in DKA and have a history of symptoms and weight loss do NOT have positive antibody tests. Where do they fit into the picture?

Hi Natalie: That is a very good question that you raise. The commonly seen stats for children and young adults with a Type 1 diagnosis is that 15 to 20% are not antibody positive. So I would surmise the same would be true of adults. Sometimes the problem is that doctors only order the GAD test for adults with suspected T1/LADA, and you really need to do the full suite of antibody testing.

The other thing I wanted to mention is that some adult Type 1's, whether diagnosed in childhood or adulthood, DO have metabolic syndrome -- there is nothing in the one that prevents the other. It makes diagnosis based on appearance alone very inaccurate. But that is what some (or many!) docs do. When the sulfs didn't work for me, my doc didn't hesitate to put me on insulin (although I was the one who asked for it), but still held to the Type 2 idea of NPH at night only, which didn't work, either. I was overweight, but not obese, did have metabolic syndrome, and yet did not respond to Type 2 protocols. I do have Hashimoto's Thyroidis (or did, I've had a thyroidectomy), and that was confirmed by antibody tests, but at the time I was diagnosed, c-peptide or antibody tests were not being used, and I have never actually been tested. My coma confirmed that I do indeed need insulin, and my new endo has me down as a Type 1, but I'm not, really -- I'm a mixed, bag, Type Weird, and am intensely interested in both types of diabetes -- wouldn't wish either kind on anyone!

Hi Natalie: You are so right, some Type 1s (autoimmune) have insulin resistance, even some kids! And some have other elements of metabolic syndrome. I always appreciate people's comments on my blogs because I want to improve them, so thanks for the excellent input. Another point for you: one stat I saw said that 80% of women with Type 1 who are over age 40 have Hashimoto's Disease. Type 1 and Hashimoto's are really closely linked autoimmune diseases, especially in women. Over the age of 40--like you and me!

I don’t know what I am.

Went to doctor with hellish yeast infection (took triple treatment to get rid of it) and sugars were over 300 (hadn’t eaten yet that day.) A1c of 10.6. Got put on metformin ER, 2000 mg/day. Exercised every day, ate carefully, three months later an A1c of 10.4 (doctor coos, “it’s coming down.”) Got put on Lantus.

Brought my morning sugars into range for about a week and a half (meanwhile, sugars exploding whenever I ate anything. Going to bed with sugars of 300 because even if I didn’t eat anything else for 10 hours, they stayed elevated.) Suddenly, my morning sugars are 170. I can’t increase Lantus fast enough to keep up with jumps like that!

And now I can’t exercise any more because I developed an incredible pain in my feet and walking is agony.

I probably had gestational diabetes. I didn’t get diagnosed – probably because I’m on medicaid so I “don’t matter.” When I changed doctors during my pregnancy, my doctor wouldn’t give me my files. I brought someone else in with me and they must have thought he was a lawyer because he started talking about how I have a right to my own medical records and they quickly said they’d go get my file. I looked into the back room and there were four nurses there, frantically scribbling information in my file – they hadn’t been keeping records on me!! So whatever data is in that file, I can’t trust because a bunch of nurses just sat there making it all up on the spot.

I got so big that people asked me if I were having twins. I was normal weight before - I’ve been obese ever after. Something “broke” when I was pregnant. My daughter was stillborn because she weighed 11 pounds and got stuck coming out and oxygen deprived and died before they could get her out of me.

Both my parents have thyroid issues and have to take synthroid pills. I keep thinking I must have thyroid problems, too, because my hair is falling out (I have to hide a big bald spot on the top front of my head now) and I only have half-eyebrows and I am obese even though I don’t eat sweets and don’t overeat. But when I ask for my thyroid to be checked, they run a TSH and tell me I’m in the normal range.

I feel like my body is a traitor. I try so hard to do everything right and I’m watching it fall apart in front of my eyes.

I was promised a CDE and every time I called the nurse to ask where my CDE was, they said she was supposed to call me and that they’ll call her again. Still no call. I have been calling every day now about my high sugars and how I think I need to add a prandial insulin. No call back. I’m supposed to wait another month and come in for my next A1c, but I’m afraid of all the damage that is being done by sitting at 300 all day. I can’t go walking any more and I’m afraid that I might be permanently crippled if something isn’t done fast. When I called the nurse today, I was crying as I left a message on the machine.

I’ve increased my Lantus again and I’m not going to eat anything until my blood sugars come down to a not-so-scary range, however long that takes. I’m not hungry anyway and I’ve been having stomach cramps for several days. I’m just angry and sad and scared and wondering what I have to do to get medical attention. Now I read that lots of diabetics don’t get proper attention. You mean this isn’t just because I’m impoverished? This is just what they do to diabetics? It makes me so angry!

Hi Sparrowrose: I am so sorry for all that you are going through. I really believe that you need to be on rapid-acting insulin in addition to the Lantus. And yes, based on your description, you may have been misdiagnosed (I am not an M.D., I am just expressing my opinion based on what you write). Yes, misdiagnosis happens to those of us with excellent medical coverage. Doctors have the mindset that adult = Type 2, despite all evidence to the contrary. Check out the group hypothyroid diabetics, and check out Gerri’s posts where she describes the more extensive testing that should be done to evaluate your thyroid. Again, I am very sorry for this horrible situation you are in. TuD is a good place to get support and understanding.