Onset of Type 1 Diabetes In Adults: The Need For Correct Diagnosis And Treatment

Type 1 or autoimmune diabetes has for some time been thought of as a disease of childhood and was previously called juvenile diabetes. But the myth that Type 1 diabetes is a childhood disease is a relatively new-on-the-scene myth. In 1934 Dr. Elliot Joslin noted that the incidence of diabetes in lean individuals was relatively constant in each decade of life, but that diabetes in the obese was related to older age. A book published in 1958 (“How to Live with Diabetes” by Henry Dolger, M.D. and Bernard Seeman) that states that “[Type 1] diabetes is almost three times more frequent among young adults than among youngsters.” Since the 1980s the autoimmune nature of Type 1a diabetes has been known, and autoantibody testing (glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), insulinoma-associated (IA-2) autoantibodies, and zinc transporter (ZnT8)) has been the gold standard for the diagnosis of Type 1a diabetes. In numerous scientific studies, approximately 10% of people diagnosed with Type 2 diabetes were found to be autoantibody positive and in fact had Type 1a diabetes, sometimes called latent autoimmune diabetes in adults (LADA) or Type 1.5. An article in 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. However, the medical community has been slow to abandon the myth of Type 1 diabetes as a childhood disease, and Type 1 diabetics diagnosed as adults are still treated as abnormalities and frequently given inappropriate treatment for the disease they have. All too often, they are diagnosed with Type 2 diabetes, which is a fundamentally different disease not only clinically but genetically, and the methods of treatment for the two diseases are also different. The misdiagnosis typically results in undertreatment, and causes needless suffering, the hastening of complications, and sometimes even death. In a recent survey conducted by Australia’s Type 1 Diabetes Network, one third of all Australians with Type 1 diabetes reported being initially misdiagnosed as having the more common Type 2 diabetes. In a recent dLife poll (dlife.com), 13% of respondents said that they initially had been misdiagnosed as having Type 2 diabetes when in fact they have Type 1 diabetes.

People with adult-onset Type 1 diabetes who initially were misdiagnosed as having Type 2 diabetes, strictly due to age not etiology, include Manny Hernandez (founder of TuDiabetes.org), Amy Tenderich (diabetesmine.com), professional surfer Rob Blase, author June Biermann, actress Elizabeth Perkins, and prima ballerina Zippora Karz. People who were correctly diagnosed as adults include Mary Tyler Moore (33), author Anne Rice, swimmer Gary Hall Jr. (24), pro football player Jay Cutler (25), and former acting US Surgeon General Ken Moritsugu (49).

It is well-known that the symptoms of Type 1 diabetes develop slightly more slowly in adults than in children. Unfortunately, because an adult with Type 1 diabetes typically has some functioning beta cells for some time after diagnosis, oral medications for Type 2 diabetes may to some degree control glucose levels right after diagnosis. However, 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, and reduce the possibility of diabetic 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.

However, these are very clinical outcomes that fail to address the “human side” of misdiagnosis. Those of us who have Type 1 diabetes but were initially diagnosed with Type 2 diabetes often suffered needlessly while on oral medications for Type 2 diabetes until we received appropriate treatment for the disease that we have (exogenous insulin). The following example describes the human impact of misdiagnosis.

June Biermann, prolific author of books on diabetes including The Diabetic’s Sports and Exercise Book, was diagnosed with Type 2 diabetes in 1967 at age 45, even though she failed to meet the criteria associated with Type 2 diabetes. June was prescribed various oral medications for Type 2 diabetes, which did not adequately control her blood sugars, and after one year of much suffering and further weight loss (and several doctors), June was treated with exogenous insulin. The standard for that time was one injection per day of NPH insulin. Although for many years June referred to herself as a Type 1.5 diabetic, today she probably would be called a late-onset Type 1 diabetic. June says, “The medical profession wanted to believe that I did not exist and that the problem was with me, when in fact it was the medical profession that ignored Type 1 diabetes in adults” and that she “has always felt misunderstood and ignored, and that [she] was a freak to the medical profession.”

Why is there a tendency to misdiagnose adults who have Type 1 as Type 2 diabetics? I believe that there are several factors, the primary one being the emphasis by the diabetes medical community that Type 1 diabetes is a childhood disease. I also think that doctors want to keep people off of insulin injections as long as possible, not realizing that for Type 1 diabetics there are significant short- and long-term benefits to beginning exogenous insulin at diagnosis. The two principal organizations that address diabetes in the United States are the American Diabetes Association (ADA) and the Juvenile Diabetes Research Foundation (JDRF). A common theme in materials published by both organizations is using diabetic children to garner more sympathy, and therefore more funding; thus, adults with Type 1 tend to be ignored because they do not garner as much sympathy. The ADA’s emphasis is on Type 2 diabetes, and ADA puts a lot of emphasis on the rarity of Type 1 diabetes (if people with adult-onset Type 1 diabetes are appropriately included in the statistics for Type 1 diabetes, it is not so rare). ADA has published a position paper on Type 2 diabetes in children, even though Type 2 diabetes affects a significantly smaller number of children than the number of adults who acquire Type 1 diabetes. JDRF was founded in 1970 by parents of children with diabetes. JDRF appears to use children, again for sympathy, but also to distance JDRF’s mission from Type 2 diabetes, which often is a lifestyle-related, preventable disease that typically occurs in older adults. Thankfully, just recently JDRF has begun to acknowledge adult-onset Type 1 diabetes and reach out to adults with Type 1. Mary Tyler Moore, International Chair of JDRF, was diagnosed with Type 1 diabetes at age 33. Arnold Donald, President and CEO for JDRF in 2007 said, “Many people don't realize that you can develop type 1 diabetes, have your first onset, in your 20s and 30s or even 40s or later, and that there are a lot of adults who have it, who didn't have it expressed as a child. And so I would say that's probably the most misunderstood thing.”

If you are newly diagnosed, and unsure if you have Type 1 or Type 2 diabetes, you can request autoantibody testing (GADA, ICA, IA-2, ZnT8). Although many doctors say the test is too expensive and not necessary, the full suite of antibody testing is only $479 (full cost out-of-pocket), it is a definitive test that means a person correctly diagnosed can receive appropriate treatment, and any diabetic complication or hospital visit will greatly exceed that small cost. A positive autoantibody test confirms a diagnosis of Type 1 diabetes. Also, the C-peptide test, which is a measurement of the body’s natural production of insulin, can be a way to gauge whether you have Type 1 or Type 2 diabetes, although it is not a definitive test.

All people deserve appropriate medical care for the disease that they have. It is imperative that the true incidence of Type 1 diabetes in adults be known, and that the diabetes medical community recognizes us, so that we who acquire the disease as adults can live the best lives possible.

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This an important topic, Melitta. I am thankful that you have expressed the realities of under- and mis-diagnoses of Type 1 in adults. The Medical community needs to be better informed so that patients can be properly educated, and will not have to suffer needlessly.

God Bless,

Whenever someone finds out I’m a type 1, they always ask how young I was when I was diagnosed. When I answer 28, I get surprised looks. I was shocked too, but it happens. I think the incidence of adults developing type 1 will continue to rise, unfortunately. I also think its due to our environmental changes.

While I love the work JDRF does for diabetes, the focus on the children needs to change. Those children grow up to be type 1 adults. What about the adults who are diagnosed as adults. The prior “rules” of type 1 diabetes have been changed.

Thanks for bringing this up.

Thanks for the facts and history of the problem of misdiagnosed type 1 diabetes. My diagnosis changed after 14 years of being misdiagnosed as a type 2. In my opinion it is bordering on malpractice. As far as I know I don’t have any long term effects of the type 2 treatment, but something may come up before it’s all said and done.

Thanks again, more light needs to be shed on this problem.

Great. First we had juvenile and adult onset diabetes, then we had the totally meaningless t1 and t2, and now we have the so called autoimmune. There is a lot of indications that actually all the major forms of diabetes may actually be all the same thing, just manifesting in different ways. And what about Halle Berry? That poor girl has been vilified in the D community as a not knowing the difference between t1 and t2. But I frankly refuse to believe that a smart woman like that with good medical care could actually have a totally bingled diagnosis. It is more likely she was diagnosed with autoantibodies and just is not requiring insulin. I’ve been askin for autoantibody testing for two years and have finally gotten approved. I was finally given a c-peptide which came in low normal and I was told it was not a useful test. What does that mean? I found you can order a full autoantibody panel including Antipancreatic islet cells; IA 2 autoantibodies; Insulin autoantibodies; GAD autoantibodies.
from privatemedlabs for $300. My expenses for virtually useless medications cost much more for a single month alone. But of course, exactly how much money would big pharma make off me if I moved to insulin?

This is an important topic, thanks for talking about it.

Hi Melitta:

Great write-up. The question is, how to make a big enough splash that neither the medical community nor general public can ignore what seems to be a rapidly escalating incidence? Do you think it’s time for a revolution?

If so, I’m in!

Actually, I’m amazed that Type 2 research does get so much attention and funding since a disproportionate number of T2s are from communities of color (the dispensibles). I recall the first days of what was then known as GRID (now HIV), when funding was almost non-existent; it wasn’t until HIV began affecting Caucasians that government funding became available.


So true E V.

Both my doctor and my endo say that I don’t need the GADA test and the C-Peptide test even though I’ve asked for them. I’ll keep pushing…

My doctor didn’t know about the GADA test either when I asked for it, she had to consult an Endo to find out what it was… The Diabetes educational person also said that GADA tests were not reliable… I don’t know why they just don’t do it and then there would be no mystery.

They might not need proof what type I am, but I do!

I think we need to make more noise about the LADA condition so that we get diagnosed properly and so there isn’t so much ignorance about it. x

Great write up Melitta! I guess that I was lucky…so to speak. I was diagnosed in my early 20’s. Tested on a Thursday and in the hospital the next morning. Put on insulin straight away. It was never questioned that I was Type 2. Type 1 from the get go. I started seeing and Endo. immediately.

As one of the many misdiagnosed as T2, I especially appreciate this blog. At 25 years old, I spent nearly six months (and 40 pounds) on oral meds before someone figured out that I was really a T1. It’s sad that the (old) labels are still influencing the current diagnoses.

As for EV’s comments . . . seriously? Does everything have to have some political agenda? Not only is your position incredibly insulting and RACIST, it’s also incorrect and not relevant to this blog. I’m so unbelievably tired of every comment being about how awful Caucasians are or how everyone is against gays and lesbians, or any of the other comments about how white/straight people are evil. The pharma industry is driven by profits not race/gender/sexuality. /rant

As always, another great blog, Melitta!

Great post Melitta! Thanks for taking the time to write this. Such an important message.

I was diagnosed correctly with type 1 diabetes at the age of 21, but I was diagnosed in the ER in DKA after about 30 pounds of sudden weight loss.

If you were assumed as type 2, get tested! There’s nothing to lose. Just confirm it!

I was diagnosed with type 1 in 2005 aged 54. I was feeling very tired and had lost over 10lb and was thirsty all the time. Went to my doctor who took a blood test and told me my blood glucose was very high and I might have type 2 diabetes which could be controlled with diet and exercise. He sent me home and told me not to have any sugar for two weeks and return. (no mention of carbs) I lasted a week and felt so terrible that when I went back he sent me to hospital immediately. I was kept in for a week and diagnosed type 1. The hospital were great. Most people I meet assume I’m type 2 as I was diagnosed so late in life.

I was amazed that doctors could be so ignorant about this - I ended up in the ER 2 years ago with crazy high blood sugars; the ER doctors stablized me and then my primary care doctor diagnosed T2 and set me up with a treatment regimen. The nutritionist, of all people, was skeptical (I had nearly zero insulin production, yet when they finally started me on some Lantus “temporarily” had quite high insulin sensitivity) and she finally convinced my PCP to send me to an endocrinologist for a second opinion. He took about 10 seconds to say that I didn’t have Type 2 diabetes, I had Type 1. Put me on insulin therapy and I got much better within days. Followed up later with antibodies tests, which were positive, of course. But I had spent 6 weeks getting sicker and sicker, being terrified to eat anything because my blood sugars would shoot up over 400 no matter how much metformin I was prescribed, and my PCP had to be talked into even considering another possibility. Scary.

You know, my endo kept saying I was type 2 like over and over for a couple of years. I was diagnosed at 17 with a blood sugar of 722. Right, type 2. Anyway, this new endo was just adamant about it and i finally said look I am type 1. He says well your chart says type 2, I said look dude, its says type 2 because your wrote it. Well he says look lets settle this we will do a Cpeptide test and I said bring it on. Well the C peptide showed no activity i mean none. So i go see the doc and he says has anyone ever told you might be type 1? I said look I am, I have been, I will be like forever. So he says, well even if you weren’t you are. So we agreed I am type 1 now, but he holds on to the idea, I was a type 2 who burned out my iselets because I dis not pay attention to my diet. Which brings up an interesting point, type 1, type 2, if the cpepetide shows zero, what the heck does it matter? If the cpepetide is zero, aren’t you type 1? i mean give me a break, it is less important hwo one gets it, and more important what you have. Grrrrrrrrr

rick phillips

No misdx with me. All the classic problems, weight loss, blurry vision, going to the bathroom A LOT, etc… After getting a thought popped into my mind(test your bs was the thought) I tested at HI 600+. I was dx’ed in ICU,DKA at age 52.