Bill of Rights for People with Adult-Onset Type 1 Diabetes or “A Manifesto for the Misdiagnosed”

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There are many names for adult-onset Type 1 diabetes, including latent autoimmune diabetes in adults (LADA)[1], Type 1.5 diabetes, and slow-onset Type 1 diabetes. Although the majority of new-onset Type 1 diabetes always has been seen in adults[2], the myth that Type 1 diabetes is a childhood disease often means adults with Type 1 are misdiagnosed as having Type 2 diabetes and/or given substandard treatment. Here is my manifesto:

· Correct diagnosis: If an adult is diagnosed with diabetes and does not appear to fit a more typical profile for Type 2 diabetes (i.e., the adult is not overweight, does not have abdominal obesity, is not insulin resistant, does not have a family history of Type 2 diabetes, and does not have metabolic syndrome), the person should be tested to see if he/she has Type 1 autoimmune diabetes. The gold-standard test for Type 1 diabetes is antibody testing (glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), and insulinoma-associated (IA-2) autoantibodies), and the c-peptide test is also useful but not definitive. If the person is antibody positive, he/she has Type 1 diabetes.

· Insulin treatment: Intensive insulin therapy should begin as quickly as possible in the newly diagnosed adult with Type 1 diabetes. The correct treatment for Type 1 diabetes, at whatever age it is diagnosed, is exogenous insulin as early as possible, to control glucose levels, prevent further destruction of residual beta cells, reduce the possibility of diabetic complications, and prevent death from diabetic ketoacidosis (DKA). [3]

· Appropriate education: An adult who is newly diagnosed with Type 1 diabetes should receive Type 1 diabetes-specific education, not Type 2 diabetes education. Type 2 diabetes is a different disease with different genetics, causes, treatments, and cures.

· Autoimmune gestational diabetes: Many if not most of the medical profession are not aware that gestational diabetes may be a precursor to Type 1 diabetes, not just Type 2 diabetes. The stress of pregnancy is "the straw that broke the camel's back" for many women who develop Type 1 diabetes during pregnancy (autoimmune gestational diabetes). Again, antibody testing can be used to distinguish autoimmune gestational diabetes, and women with autoimmune gestational diabetes should begin intensive insulin therapy immediately.[4]

· Inclusion in appropriate statistics: People with adult-onset Type 1 diabetes should be included in statistics addressing prevalence and incidence of Type 1 diabetes. At the present time, most adult-onset Type 1s are included in figures for the numbers of Type 2 diabetics. In information distributed to laypeople, the U.S. Centers for Disease Control and Prevention (CDC) and the American Diabetes Association (ADA) consistently say that Type 2 diabetes represents 90-95% of cases of diabetes in America and that Type 1 diabetes represents 5-10% of all cases of diabetes. However, this is incorrect according to ADA’s own peer-reviewed scientific journals. That 90-95% Type 2 statistic includes people with LADA, and according to the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus (as published in ADA journals), "Although the specific etiologies of [Type 2] diabetes are not known, autoimmune destruction of beta-cells does not occur." The National Institutes of Health (NIH (NIDDK)) defines LADA as a condition in which Type 1 diabetes develops in adults. Furthermore, the Expert Committee’s definition of Type 1 diabetes by the clearly encompasses all autoimmune diabetes, regardless of age, which includes LADA (“Type 1 diabetes results from a cellular-mediated autoimmune destruction of the beta-cells of the pancreas. In Type 1 diabetes, the rate of beta-cell destruction is quite variable, being rapid in some individuals (mainly infants and children) and slow in others (mainly adults).”) According to Irl Hirsch M.D., member of the Expert Committee, “The term latent autoimmune diabetes of adults (LADA) as originally described represents perhaps as many as 10­ to 20% of adult-onset patients with diabetes.” Doing the math, Type 1 diabetes represents about 20% of all people with diabetes.

· Inclusion in clinical trials: People with adult-onset Type 1 diabetes should not be excluded from clinical trials for Type 1 diabetes strictly because of age. For example, Type 1 Diabetes TrialNet excludes many Type 1 diabetics and their families based on age at diagnosis. Type 1 autoimmune diabetes is diagnosed based on epidemiology, not age; therefore, TrialNet is not truly representative of the full scope of Type 1 diabetes. Former acting U.S. Surgeon General Dr. Kenneth Moritsugu, who was diagnosed with Type 1 diabetes at age 49, would be excluded from Type 1 Diabetes TrialNet.

All people with Type 1 diabetes deserve to be correctly diagnosed and be given disease-appropriate treatment, yet for many people with adult-onset Type 1 diabetes that is not happening today.


[1] More recently, diabetes researchers have discouraged the use of the term latent autoimmune diabetes in adults, because LADA is not a latent disease. One group has proposed the term ADASP (autoimmune diabetes in adults with slowly progressive beta cell failure), but this term seems cumbersome.

[2] The U.S. Centers for Disease Control and Prevention’s (CDC’s) most current information on the prevalence and incidence of Type 1 diabetes comes from Diabetes in America, Chapter 3, “Prevalence and Incidence of Insulin-Dependent Diabetes” (Diabetes in America, Second Edition, 1995). Although people who use that reference as a source of incidence statistics state that there are about 30,000 new cases of Type 1 diabetes each year and that half of those cases are children. In fact, that source states that children (<20 years of age) account for 13,171 cases and adults (>20 years of age) account for 16,542 cases, for a total of 29,713 new cases of Type 1 diabetes per year, 56% seen in adults. Furthermore, that source states that there is an “unknown number of adults identified as NIDDM (non-insulin dependent diabetes mellitus, now called Type 2 diabetes) who have slowly progressive IDDM (insulin dependent diabetes mellitus, now called Type 1 diabetes).” In summary, of those new onset Type 1 diabetics who are correctly diagnosed, 56% are adults, and an unknown number of new onset Type 1 diabetics have been misdiagnosed as having Type 2 diabetes and thus the majority of new onset Type 1 diabetes is seen in adults.

[3] In the Diabetes Control and Complications Trial (DCCT), all subjects with adult-onset Type 1 diabetes had some residual beta cell function (Bernard Zinman MD, DCCT). Those who were assigned to the intensive insulin therapy group were slower to lose residual beta cell function than the conventional therapy group (risk reduction 57%). Clearly, early intensive insulin therapy has enormous benefit. As demonstrated in the DCCT, “intensive therapy for Type 1 diabetes helps sustain endogenous insulin secretion, which, in turn, is associated with better metabolic control and lower risk for hyperglycemia and chronic complications.” LADA researchers in Japan (Kobayashi et al, 2002) have conclusively demonstrated that better preservation of beta cell function occurs with exogenous insulin compared to sulfonylureas, and that sulfonylureas hasten beta cell destruction. In other words, doctors may inappropriately use Type 2 therapies in new-onset Type 1 diabetes, but all scientific studies indicate that the correct therapy is intensive insulin therapy.

[4] In Europe, the literature on gestational diabetes mentions autoimmune gestational diabetes, but in North America the layperson literature doesn't mention it. However, the existence of autoimmune gestational diabetes is widely reported in North American scientific literature (for example, a July 2007 "Diabetes Care" article and also an April 2003 "Diabetes Care" article on GDM). The July 2007 issue of "Diabetes Care" indicated that autoimmune gestational diabetes (new onset Type 1 diabetes) accounts for about 10% of all Caucasian women diagnosed with gestational diabetes (Diabetes Care July 2007 vol. 30 no. Supplement 2 S105-S111 ). It says “A small minority (≤10% in most studies) of women with GDM have circulating antibodies to pancreatic islets (anti-islet cell antibodies) or to β-cell antigens such as GAD (anti-GAD antibodies)” and then notes, “They appear to have evolving type 1 diabetes that comes to clinical attention through routine glucose screening during pregnancy. Whether pregnancy can actually initiate or accelerate islet-directed autoimmunity is unknown.”

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Thank you for sharing this :slight_smile:

I’ve posted it before but my journey to a correct diagnosis was long and frustrating… during most of which I was told NOT to take insulin - the only thing my body desperately needed!

I have officially been diagnosed with all 3 major types of diabetes (GD, T2, then correctly as a T1) I was never hung up on what “type” I was as much as being allowed access to a more appropriate treatment for myself. During my pregnancy I was put on insulin immediately as my levels were quite high, but afterwards I was referred to a doctor who flat out refused accept that I might not be a T2 based only on a c-peptide result that was still within “normal” (though at the VERY bottom of the lab range), and would not test me for antibodies (at this point I made an appointment for an endo and began the 3 month wait for an appointment), and I would get yelled at during each visit for taking insulin on my own when I was high - because as she said, I wasn’t giving the oral meds “time to work”. She was convinced I was non-compliant… but from my perspective, I was a new mom, and I felt HORRIBLE when I was high (and we’re talking 300+, not just a little high)… insulin was the only thing that helped. I had it and I wasn’t afraid of it, so why not use it?

I still wonder what it would have taken for that first doctor to believe me… I think if I hadn’t been trying to take care of myself the best that I could, I know I would have ended up in DKA.

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It’s wonderful–thank you!

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WOW! Great post.

It’s frightening to me when I read of the large number of “Adult-Onset” T1’s who are mis-diagnosed.

Fair Winds,
Mike

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Wonderful Manifesto, Melitta. I have seen so many misdiagnosed LADA diabetics in the African- American communiuty; so many who tried so hard to follow the ADA type 2 diet AND oral agents that did not work;… and then got blamed for being noin-compliant!! And many of them gradually withered away or are in the process of withering away…Thanks for your commentary and profound prose.

God Bless,
Brunetta

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I’m glad you put this together, but I really wonder, exactly who should be listening? In my view, the clinical guidelines are mired in a corrupt system. We just had the AACE, ADA and WHO collaborate in the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus, all they could come up with was that maybe the HbA1c should be used for screening. Both the ADA and AACE are silent on the use of autoantibody tests to identify patients who are actually what we would now call type 1a, autoimmune diabetes. And as you note, these patients are usually designed t2 and mistreated and if lucky are given the term LADA.

Heck, the standard diagnostic codes are so out of date they only refer to insulin dependent and non-insulin dependent diabetics.

I sure wish somebody were listening. My endo was on the task force that developed the 2007 AACE diabetes guidelines. I’d be happy to send this to him if people generally agree.

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I don’t think it’s endo’s who need to read it, I think it’s all the GP’s (as well as many internists) out there who think they “know it all” and refuse to refer people or run further testing. I would almost bet that in most cases of misdiagnosis, there is a GP or internist to blame… and difficulty getting a referral to an endo.

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Agree, Sarah.

My PCP, who’s an incredible person & a great doctor, told me that over 50% of his patients are diabetics. He has a large practice with two or three other doctors. I don’t know if this is a typical percentage, but if it’s close that’s a lot room for misdiagnosis.

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My Kaiser endo told me that if she is away from the medical center/hospital for just a few days, someone ends up misdiagnosed (new onset Type 1 gets misdiagnosed as Type 2). I do actually think it would be very helpful if BSC were to give this to his endo. I think that “getting the word out there” via many avenues will eventually bring about change. I myself, in my quest to change the U.S. medical community’s perception that Type 1 is a childhood disease, have used many avenues. Progress is glacially slow, but I have seen progress. One huge area where I have made basically no progress is with the American Diabetes Association (ADA), and if ADA were to actually disseminate correct information about Type 1 diabetes, I think we would see much faster and better improvements for adult-onset Type 1s.

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Can we change #1 to All adults. I was (still am) over weight when I was in the ICU with DKA and they never ran a @#$%^ antibody test. A few years later I asked my Endo for one and sure enough I had antibodies.

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Thank you for this!

I would like to add under the correct diagnosis that Type 1 is not always “idiopathic”. This is the problem I’m having with the Canadian Diabetes Association and those who follow it. My family doctor believed, up until my endo proved I’m Type 1, that you have to become very sick very quickly in order to have autoimmune diabetes. This was not the case with me at all.

My diabetes was not idiopathic, I am not insulin resistant and I don’t have MODY. So to the CDA, I don’t exist.

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Sarah – glad to hear I’m not the only one who’s taken insulin behind my doctor’s back! Sad isn’t it?

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Sarah and Kelly, I am sure that you aren’t the only ones sneaking insulin! It really is a sad commentary. And Kelly, I completely agree about the “idiopathic.” Of course, the reality is that rapid-onset autoimmune diabetes is the MINORITY, with slow onset Type 1 autoimmune diabetes being about 75% of all Type 1. All the scientific literature on LADA mentions the slow autoimmune attack. And Matthew, I’ll have to work on rewriting #1, because you are SO correct that LADAs (or in your case rapid onset Type 1) can be overweight. Thanks everyone for your feedback.

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Thanks Melitta You Rock! I appreciate your research and this knowledgeable “Bill of Rights” with citations! We need doctors to acknowledge this condition and treat it correctly! It shouldn’t be such a battle to get the correct treatments when all this info. is out there. Your efforts here are recognized and appreciated and I will copy and paste this for my Endo. and OB and others I want to know this! Maybe just maybe it will help someone or plant a seed! Share this message all you can fellow LADAs!

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Hello again. I’ve decided to write lobby letters to the CDA and the Alberta Diabetes Foundation. How did you find these studies that you’ve quoted? What are the best sources for information/clinical trials?

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Hi,
“A Manifesto for the Misdiagnosed”- I am new to this LADA group, and I really like the work that you are doing. I am Type 1 LADA…I was totally misdiagnosed as Type 2 for 1 1/2 years… I was diagnosed in an Emergency room in a state of DKA on 12/24/07, I had blood glucose of 365 and an A1C of 15. They told me I was Type 2. After 1 1/2 years of trying to live on diabetic pills and i also added Lantus, I was still really really sick from a lack of insulin. Anyway, I finally met a doctor 1 yr. ago from Harvard and he did a GAD 65 test on me and it was very positive. As I was instructed to add mealtime insulin, I began to rash over and itch like I had the measles. I kept telling everyone that I was allergic to the insulin and everyone told me that it was impossible. After being on the waiting list for 4 months, I finally got to see the top Insulin drug allergist at Johns Hopkins. Turns out I tested positive to all insulins at Johns Hopkins. I am actually allergic to the insulin molecule itself. Hopkins says that they have not seen anyone like me in over a decade. Needless to say, I am living a challenge. I am allergic to the drug that is saving my life. I would like to set up a national effort to have our own classification of Diabetes for us LADA folks. There has been some talk of either Type 1.5 or Type 3. When you tell some doctors that you are Type 1.5 they tell you that there is no such thing. I was recently told that when you are admitted to a hospital in a state of DKA (and I was hospitalized for 4 days), that the hospitals don’t do any of the antibody testing. I was on insulin in the hospital and was sent home only on Metformin pills. The hospitals are triage and they focus on saving your life, Then the doctor took the diagnosis from the hospital as Type 2. Big clue that was missed, I live with two other Auto Immune conditions: Graves-Auto Immune Thyroid and Auto Immune Chronic Hives. Many people totally missed the boat on my misdiagnosis. I would love to do work in this area to help other people, so that they will not have to suffer for years like I did. Any ideas on how we can get a formal medical classification for LADA? Thanks for your group. Sincerely, Nance

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Hi Nance: I am glad you like this manifesto! You and I both had rapid-onset Type 1 diabetes (I was also hospitalized in DKA, and initially misdiagnosed as Type 2), and what I am actually trying to do is get the recognition within the medical community that new-onset Type 1 diabetes is far more common in adults than children and deserves appropriate treatment. Kelly is collecting stories of misdiagnosis like yours, and she has put together an incredible letter to one of the major Canadian diabetes initiatives, so it would be great if you could contribute your story. Also, take a look at my post “LADA is Dead: Long Live Autoimmune Diabetes” about what some forward thinking researchers are suggesting, which is eliminating the term LADA.

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There are a couple of errors in your post.

You stated that …
Type 2 diabetes is a different disease with different genetics, causes, treatments, and cures.

Type 2 has no cure, neither does type 1 or LADA. Therefore, there aren’t different cures.

There are different treatments early in type 2, however, as the disease progresses, type 2’s need insulin, just like type 1s.
In fact, the best treatment for type 2’s is to go on insulin early to prevent total loss of beta cells from the toxicity of excess blood glucose.

The causes of Type 2 are not clearly known, although there are several possible contributing factors.
For more info check out …
http://www.phlaunt.com/diabetes/14046739.php

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Hi Emmy: The potential cures for Type 2 diabetes focus on overcoming insulin resistance; the potential cures for Type 1 diabetes (including LADA) focus on replacement of the beta cells lost to immune-mediated destruction, and overcoming the autoimmune attack. The vast majority of Type 1 diabetes (and all LADA) is autoimmune in nature; Type 2 diabetes is not (according to the World Health Organization and the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus:“Type 1 diabetes results from a cellular-mediated autoimmune destruction of the beta-cells of the pancreas. Although the specific etiologies of Type 2 diabetes are not known, autoimmune destruction of beta-cells does not occur.") hence the different potential cures for the two different diseases that are presently being researched. So yes, the potential cures are different because the underlying disease processes are different.

The statistics for the number of Type 2s that are on exogenous insulin therapy are skewed because LADAs are at present included in the stats for Type 2 (another reason we need LADA awareness week). All people with Type 1 autoimmune diabetes require exogenous insulin to survive due to the autoimmune destruction of their beta cells; the same is not true for all people with T2 (especially when you remove the LADAs from the T2 stats–the usual quote is “40% of Type 2 diabetics eventually require insulin.” Yet if people with LADA (autoimmune diabetes requiring exogenous insulin treatment) are removed from this statistic, about 25% of Type 2 diabetics eventually require insulin, far less than the 100% of those with Type 1 autoimmune diabetes who require exogenous insulin.). As you point out, recent researchers have shown that early use of exogenous insulin is often the preferred approach for those with Type 2 diabetes.

The one item I wish I had corrected before this blog was re-posted is weight at diagnosis: as Matthew points out, people with LADA can be overweight at diagnosis.

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This is the first time that I’ve seen a link with Gestational Diabetes and T1. I was hypoglycemic through high school and college, but even before I knew I was pregnant I wasn’t having the lows that I would normally expect. It was great - I thought! However, I knew something wasn’t right and I asked my doctor to test for gestational diabetes around 15 weeks or so. Totally failed the glucose tolerance test - Both times I was over 300’s and got into the 400’s.

I have a long family history of type 1 and 2’s in my family - my mom (T2 on insulin), her brother (my uncle - T2 on insulin), his son (my 1st cousin - T1, diagnosed when he was 9), and a great aunt (T1). We tried diet and exercise first, but that didn’t work and I went on insulin. I knew that it wasn’t going to go away after I had my son, and sure enough the pills did nothing to bring down my BG’s and went back on insulin shortly after having my son. I tested positive for the antibodies. I was an athletic, 23 year old when I got pregnant. I’ve always been athletic and slender (never “skinny”). I knew I was most likely going to be a diabetic like the rest of my family, but not until at least my mid 40’s. But God has a plan, and He’s not going to give me more than I can handle. Through this I’ve met so many awesome people through the DOC (diabetic online community).
You all rock and we can do this together. :o)

Praying for a cure!