As some of you know, I do advocacy on behalf of people with adult-onset Type 1 diabetes, to get a correct diagnosis and treatment. Sadly, many if not most people with adult-onset Type 1 diabetes are misdiagnosed as having Type 2 diabetes, based on age not etiology (I was misdiagnosed myself). I have been helping a journalist with an article on misdiagnosis, and it has just been published in Slate. Here is a link to the article.
Excellent article, @Melitta. The incidence of this misdisagnosis of T1Ds as T2Ds amazes me. From the Slate article:
Exactly how many adults with Type 1 diabetes are misdiagnosed each year in the United States is hard to track. Regina Castro, an endocrinologist at the Mayo Clinic, estimates that anywhere between 10 to 30 percent of adults diagnosed with Type 2 each year may in fact have Type 1.
As your many years of writing about this attest to clinicians as a group who just donât seem to be able to get this right. The article quotes Dr. Irl Hirsch, University of Washington professor and T1D himself, about his propensity to order the suite of antibody tests if he has any doubt:
âI have an extremely short fuse for measuring for antibodies when Iâm not sureâ Hirsch said.
Iâve read many comments of this site that report the physician reluctance to order the antibody blood tests. Some here even report that their doctors skeptically ordered the antibody tests only to humor their patients, and then, to the doctorsâ chagrin are surprised with positive results leading to the correct and unexpected T1D diagnosis.
Thank-you for your dedication to this worthy cause. Iâm sure there are many people living with diabetes who are not aware of this issue either.
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Shortly after my diagnosis I got into a fight on the phone with a nurse who kept saying something like, âyouâre 40, so youâre Type 2.â Some people only have one box, and if you donât fit into that box they donât know what to do with you.
Luckily my doctor ordered all the antibody test on our first meeting and the result was clear: Type 1, or Type 1.5, or LADA, orâŚpretty much anything BUT Type 2.
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My aunt was diagnosed as a Type 2. Her GP made the diagnosis and spent at least a year or two trying to treat her with diet, exercise, and T2 pills of various sorts. It all failed badly.
My aunt was at or near retirement age when she was diagnosed. She was a physical education professor at a state university, so she was no stranger to proper diet and exercise. She was in better shape at age 55 than I probably was at age 20. So the whole âdiet and exerciseâ mantra was not the right angle for her at all.
It took a long time of her talking about bad blood sugar numbers and me saying âyou need to see an endocrinologistâ before she finally agreed and did so. They immediately put her on insulin.
She still struggles â she never senses when her blood sugar is dropping, and it drops fast and hard and often. But she is doing so much better now that sheâs on insulin instead of trying to fight the wrong disease.
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The VA diagnosed me as Type 2. For over a year and a half they gave me all kinds of pills. Some of which really screwed with me.
I had asked for a few tests a number of times while at the VA, and they just said 'Oh, you donât have to worry about those tests, those are not for youâŚ"
I finally found a way for the VA to pay for me to see a private endo.
Within 5 minutes of my seeing my new endo, she said I was Type 1.
Of course my endo is a Type 1 with a Type 1 daughter, so she is more then just a little bit âinvolvedâ with management and care.
If I hadnât fought to see a private Dr, I know that I would have had to be hospitalized before (maybe) the VA would do something more.
During my last appointment, back in February, my endo had a med student observer sitting in on the session. I assumed it was someone planning to specialize in endocrinology as well, but at the end of the appt. I asked, and she told me, No, she was going into general practice; she just wanted to know more about D patients and treatment. I highly commended her for it, and gave her the whole spiel about how many T1âs I know of who were misdiagnosed because of their age. I could tell it made an impressionâfelt like making a difference, one (potential) GP at a time!
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Not only are new-onset type 1 patients misdiagnosed as type 2 because they are older, but even longstanding type 1s are often assumed to be type 2s because they have not died before they have gotten to their forties. This leads to foolishness like doctors in the hospital setting telling me I should probably go off insulin because my results the day before were so low.
Iâve run into that one myself. âI thought only kids had that!â UmâŚ
a) No.
b) You donât grow out of it.
c) Kids grow up; then theyâre not kids anymore.