A Field Guide to Identifying the Misdiagnosed Person with Type 1 Diabetes

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 [Footnote 1]. Sometimes they are middle-aged and no longer at fighting weight. Sometimes they are older or elderly. 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. 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 slowly progressive 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 altogether different diseases, with different genetics, causes, treatments, and potential 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 and potentially death due to DKA (diabetic ketoacidosis). Another very dangerous situation is when the stress of pregnancy is “the straw that broke the camel’s back” and pushes a woman over the edge into overt Type 1 diabetes. Most medical literature only associates gestational diabetes with Type 2 diabetes, yet fully 10% of women with GDM have the autoimmune markers for Type 1 diabetes. Misdiagnosis can lead to fetal death.

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 (autoantibody testing (GADA, ICA, IA-2, IAA, ZnT8) at full price less than $1000) 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, 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 three times [or more] the number of people with childhood-onset Type 1 diabetes [Footnote 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 is on their website, where ADA states, “Type 1 diabetes is usually diagnosed in children and young adults, and was previously known as juvenile diabetes. Only 5% of people with diabetes have this form of the disease.” Yet ADA’s “Diabetes Forecast” magazine had a recent article in which they discussed adult-onset Type 1 diabetes and the problem of misdiagnosis as Type 2 diabetes [Footnote 3] and “The Type 1 Diabetes Sourcebook” published by ADA and JDRF in 2013 says that adult-onset Type 1 diabetes is more common than childhood-onset Type 1 diabetes, and says that about 10% of people with “Type 2” diabetes are misdiagnosed and have Type 1 diabetes.

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?

[Updated from a circa 2010 post]

Footnote 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.
Footnote 2: Type 1 Diabetes in Adults: Principles and Practice (Informa Healthcare, 2008), page 27.
Footnote 3: “Diagnosing Type 1 in Adults: Why Type 2 Misdiagnoses Abound, and What You Can Do About It” Diabetes Forecast, September 2015.


Hmmm … if 10% of T2Ds are actually T1D and T2D makes up 95% of all cases, then 9.5% of T2Ds are T1 in addition to the 5% that are “correctly” diagnosed. That places T1Ds @ nearly 15% of the diabetic population.

“There are three types of lies: lies, damned lies and statistics!”


I’m very curious about this because there seem to be a couple of different presentations at work here. I was dx’d with T1 in 1983 just after turning 28. I had all the classic T1 symptoms, which came on rapidly after a pretty nasty case of flu. I had no idea what was wrong–I was in grad school and I thought a) there was something wrong with my bladder (peeing! thirsty! why???), and b) “it’s just exam/seminar paper anxiety, no wonder you’re feeling nauseous, confused, headachy… but WTF is up with my eyesight getting all funky?” It was about 2-3 weeks between Something Is Just Not Right Here and my mother-in-law (an occ. therapist in an elder care facility) saying “that boy’s got diabetes, get him to the doctor.” My PCP, after testing my BG immediately gave me a shot of R insulin, told my wife “If you hadn’t brought him in this afternoon you probably wouldn’t have been able to wake him up in the morning.”

So that seems really different from the stories I hear from other adult-onset T1s, where they get misdiagnosed T2 at 30-ish (or later) years old and they go on for months (even years, in some cases) with Metformin/diet & exercise advice etc., until finally getting correctly dx’d. As I understand it after just a couple of weeks I was on the verge of DKA and wouldn’t have lasted another few days, much less months and months if my PCP hadn’t got it right to begin with. Was I just “lucky” or are there two different versions of what ever it is that we’re being hit with?


@DrBB, I would say that you are lucky. I was 35 when diagnosed in 1995, also rapid onset, hospitalized in DKA, and still misdiagnosed as having Type 2 diabetes. Many of the people that I know who were misdiagnosed as having Type 2 actually soon after went into DKA, then their diagnosis was changed to T1D. And many of the people that I know who were misdiagnosed have severe complications–if they had received a correct diagnosis and correct treatment, those complications could have been avoided. I would say that there is a continuum, not two different versions: on the one end the rapid-onset Type 1s, to the people with slowly progressive Type 1 who go for many years before needing insulin. And lots of variability in between. What is clear is that correct diagnosis and treatment prevents complications and saves lives.


Point taken. I wonder if my “luck” had to do with being in a university environment where there must have been others my age or younger getting dx’d, and the “juvenile” diagnosis–which is what my actual dx said–being less of a stretch than “adult onset” which was still distinctly associated with people in their 50’s, minimum. I remember that age distinction being featured in what I was told at the time and the educational materials I was given. Maybe I benefited from the more modern T1/T2 labelling not having fully penetrated yet. I certainly never heard of it until years later, even though I gather it was starting to come into use around then. So many arbitrary factors…

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This information is very helpful. It is clear that I need to be tested for the LADA antibodies. I’ll be making a phone call to my doctor on Monday. Thank you for such a thorough explaination of how a misdiagnosis can occur.


@Melitta, thanks so much for all the time and research you’ve put into this issue. I was a lucky one who was diagnosed by a nurse practitioner who knew his stuff and immediately had the GAD test done, but there are so many insane stories out there of T1s suffering because their docs refuse to reconsider the T2 diagnosis. I wish there was a way to send you to every public meeting of doctors in the country to give a presentation on this issue!


I too was diagnosed as type 2 since I was 50 yrs. old at the time. My nurse practitioner also had the anti GAD test ordered. I was very positive for auto antibodies! The problem with mine is that no one will say I’m type 1!!! I’m still labeled as a type 2. I only take metformin 2x’s a day. No insulin. It is SO hard to keep my numbers down to somewhat normal. I do have a reasonable A1c at about 6.5 but I have to only ear a few foods! Even beans make sugar raise a lot so I only eat a smaller amount. I’m tired of having to starve to keep my numbers so called normal. I do get numbers over 200 so I must be getting lower ones at night. I know I’m getting worse because it’s getting harder to control. I don’t want to have to make my numbers out the roof and ruin myself to get insulin!

@tucsonmo, I am sorry to say, in this situation IMO you must be your own best advocate and insist on a correct diagnosis and correct treatment (exogenous insulin). You do not have Type 2 diabetes and you should not be treated as if you have Type 2 diabetes. You have Type 1 autoimmune diabetes based on being diagnosed with diabetes and being autoantibody positive. Some helpful information for you, that you can share with your medical providers, comes from “The Type 1 Diabetes Sourcebook,” 2013. Anne Peters, MD, and Lori Laffel, MD, MPH, Editors. JDRF and American Diabetes Association. They say:

• Adults developing T1D may follow a less precipitous course with few or no symptoms and an elevated glucose level identified incidentally on routine blood work. These individuals may be treated (unsuccessfully) with oral agents before it is determined that they are actually patients with evolving T1D who need treatment with insulin. Page 3.
• Initial Treatment for Adults: Adult patients can vary greatly at presentation, from a more acute picture, with DKA and marked hyperglycemia, to a more gradual course such as is often seen in LADA. For those presenting acutely as well as those presenting more indolently, starting insulin is the mainstay of therapy. Page 79.
• We consider all patients with evidence of autoimmunity to have T1D. Page 5.

Finally, The Expert Committee on the Diagnosis and Classification of Diabetes Mellitus (ADA/WHO), as published in American Diabetes Association medical journals, says, “Although the specific etiologies of [Type 2] diabetes are not known, autoimmune destruction of beta-cells does not occur.” Meaning, if you are autoantibody positive you don’t have Type 2 diabetes.

For your health, I would suggest that you speak with your health care professionals, and insist that your records be corrected to Type 1 and that you be given insulin, which is the correct treatment for Type 1 diabetes. I know that it can be difficult, but it is your health and your life. Best of luck to you!


Thank you, It’s been so crazy trying to convince the medical doctors that I am a type 1 because my A1c has been 6.5 I still produce insulin. It is really hard because I can barely eat at times. About 6 months after I was diagnosed I was feeling really sick to my stomach and actually threw up. My friend brought me to a local medical facility and they said I must have the flu or something. I asked if they would do a urinalysis to make sure I didn’t have keytones. They weren’t going to do it! She said I didn’t need it. I told her my sister is a type 1 diabetic and I have seen her when she had keytones. I insisted she do a urinalysis. Reluctantly she finally did. I’m glad she did too! It was 3+++! She just gave me the result sheet and sent me on my way. I didn’t really know what keytone level was bad so the next day I called my sister and told her the story and she about came unglued! She asked if I went to to hospital after that. I told her no. I felt fine and didn’t think I needed to. Anyway, I just hate that no one thinks I’m a type 1 and I don’t think anyone ever will at this rate! The odd thing to me is I can’t believe people would even think I am a type 2 since I am 5’ 6" tall and weigh 106 lbs! Do you know any type 2 diabetics that have anything close to that? Most I would think are overweight! I’m tired of getting things in the mail and online telling me ideas of how to lose weight to help my diabetes! Sorry for complaining so much. It’s just so frustrating!!!

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You even have a family history of type 1. Can you change drs? Go see your sister’s dr. Honestly you are Type 1. You need to insist on the right treatment now. Your current medical team are doing their best to try to kill you.

My sister lives in another state, she’s been type 1 since she was 12 so no one has any issues with hers. She hates how doctors don’t recognize I am a type 1 late onset! The anti-GAD should say it all! I am going to shop around to see if I can find one that is more educated on this subject. I really like my doctor. As a person he is the nicest! I can’t put my life on the line for niceness though. Thank you for your interest in my situation.

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I think they don’t care enough. That’s what I suspect anyway. There seems to be some kind of mental block in society towards diabetes. When I remember my doctors’ words at the time she diagnosed me, it makes me a little angry. I didn’t know much about diabetes at that time, but I was aware there was type 1 and 2. So when she said I was type 2, I asked her how she knew. Her answer was, “because that’s what most people are.” Gee thanks doc. If I was her daughter, I bet she would’ve checked to make sure, wouldn’t she.

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Hi @Maria32: Here is a quote from a blog on my adult-onset Type 1 website: ‘The Hippocratic Oath says, “First do no harm.” Medical doctors already know how to effectively treat Type 1 diabetes in children and teenagers; that excellence in care should also be applied to adults with new-onset Type 1 diabetes. When a child is diagnosed with Type 1 diabetes, the medical community springs to action on the child’s behalf, because Type 1 diabetes is a serious, life-threatening disease. Kids who are diagnosed with Type 1 diabetes are shown great compassion, and the disease is acknowledged to be profoundly life-altering. Yet often it appears that adults are not shown the same respect. For patients with adult-onset Type 1 diabetes, the person should be correctly diagnosed, treated with exogenous insulin, acknowledged as having a life-threatening disease, and treated with compassion.’ [Adult Type 1 Diabetes Blog] It is truly strange that many doctors don’t care to make a correct diagnosis, but certainly that is common. Best of luck to you! I am glad you are on the right track.


I totally agree! Here in Canada where I am, I think people are covered for a pump up to age 25. Apparently anyone beyond that age is not important. :confused: Not to say that I wanted a pump, but, it’s just one of the many things that prove this to be right.