We had a thread here a while back about all the Type 1s who had been misdiagnosed because of age of onset. I think every Type 1 who got the disease in mid-life was initially misdiagnosed. I know I was - although not for 8 years….
Initially, I was treated at Cambridge City hospital. They are good, but not diabetes specialists, and in Boston we have the Joslin clinic. Once I went there, they gave me the correct diagnosis.
@bostrav59 The thing that was astounding was I ate really well and swam 75 laps at least 5 days a week at a gym pool. But I have always been overweight and so they assumed no matter what I had to be a type 2. When I first had sugar issues I asked my doctor if I could be a type 1 as I had had an uncle who had been a type 1 and was told by my pcp that drugs wouldn’t work at all if I was a type 1. Because I kept getting worse, and the drugs kept giving me side effects she sent me to an endo. The 2 times I saw him I asked if I could be a type 1 as I had an uncle that had been a type 1 and he said no and never tested me. He just wanted to try the drugs again that had made me sick and I refused to go back to him.
The time frame all took years and I had been put on a basal insulin since I was having issues with all the diabetic drugs, besides the fact they weren’t working well. I switched doctors who immediately added a fast acting and I felt so much better. As soon as the group hired a new endo she sent me to her and that is the endo that automatically tested me for type 1 and I was finally diagnosed right. An endo, 2 pcp’s, and a family history of type 1 and I still couldn’t get a proper diagnosis. Over 8 years is from the point of being improperly diagnosed a type 2.
It is ridiculous; @mohe0001 you might want to think about the issues here. I get a “complete metabolic panel” every three months and it has a whole load of tests in it that aren’t going to tell the doc anything new. Getting a set of antibody tests for someone with a high HbA1c (i.e. over 6.5%) seems like such a basic, simple and not that expensive set of tests that I cannot understand why it isn’t routine.
I mean why waste all this money on “comprehensive metabolic panels” with a perfectly healthy patient then fail to perform a test which only needs to be done once?
What about my guy with NDM who has misdiagnosed for 50 years? Getting an accurate diagnosis is a pretty low bar for what we should expect from healthcare. Monogenic Diabetes (MODY & Neonatal Diabetes Mellitus) - NIDDK
I was 25 years old 50 years ago, the human genome was mapped 25 years ago. While it was described Robert Tattersall and Stefan Fajans Robert Tattersall and Stefan Fajans In 1974 as a diabetes mellitus that wasn’t type 1 or 2. However it wasn’t until around of 2001 that there was a clinically available genetic test that would recognize 3 genetic variants -HNF1A, GCK, HNF4A associated with Monogenetic DM.Later advancements have led to improved methods of diagnosing monogentic DM and the discovery of some 11 genetic variants that cause it.
I think your friend was diagnosed as T1DM because the doctors at the time were not aware of mongentic DM and there was no tests at the time.
It messed him up. He seemed hell bent on persuading people to take our tech away from us because we don’t need it. I think we got it handled. But, he was running a little fast and loose with the idea that dependence on expensive medical tech was some kinda personal failing, as if anyone on an inulin pump simply had not ‘figured out’ their diabetes as well as he had. I think we got that wrapped up. He was not doing us any favors with the GOP think tanks. It’s been handled now. I appreciate your assistance. It was needed. I was having a little trouble understanding the thought process behind what was unfolding out there in the battlefield. It was getting my attention because something was happening that really didn’t do us any favors.