I wish they did this!!!
Thats a nice visual. I can never remember those tests you all talk about. This makes it really memorable.
It makes me wonder what motivates the reluctance of any doctor to order these tests when they seriously consider whether a patient is T1D or T2D. Is it due to the infrequent prevalence of T1D vs T2D? Perhaps it’s the cost of the antibody tests as there are several that can be tested.
Doctors have a poor record of misdiagnosing T1D as T2D, especially when presented with a patient who actually has latent autoimmune diabetes in adults or LADA. LADA is slow-onset and presents much differently that the fast onset and quick to DKA that is typical in children.
One member here, @Melitta, has studied this phenomena extensively and she has cited statistics that estimate that 10% of all T2D diagnoses are really T1D. If 90% of all diabetes diagnoses are T2D then 10% of that number is huge. Put another way, if my understanding is correct, one in two T1D diagnoses is incorrect.
Missing this diagnosis and subjecting the patient to possibly years of poor glucose and related secondary complications is medical malpractice. This can be fixed!
Stealing this . So true, and if I had been tested at all for diabetes by numerous doctors I went to with obvious signs of diabetes, I would not have ended up in the icu with serious complications etc. All of that could have been avoided had I been correctly diagnosed and put on insulin.
A year and a half is what it took for me to get changed from T2 to T1 by the VA.
And even then, they did not change it in my records for almost another year!
Yes, please! I was misdiagnosed as T2 12 years ago when I was 34, mildly overweight with no family history of T2. Years of struggling later I finally found a new endo who immediately ordered those tests and wouldn’t you know, I have LADA. Too bad my a1c had to get to 14.2 before I could get better help.
I think doctors buy the fat bias - if a patient is at all overweight, then everything is their own fault and they must be Type 2. If they can’t control it they must just be sneaking Twinkies. Never mind that NONE of that is true, and being overweight does not cause T2.
I’m not bitter though.
I was diagnosed T2 at age 67 by my primary care physician. I struggled for a year and a half after losing 30 pounds. I was following T2 treatment and didn’t respond. I went to a CDE and she ordered the tests and I am T1. I think PCPs need to rethink their “juvenile” diabetes mind set.
I sometimes need to remind myself that doctors suffer from the same social biases as the rest of us. I do think, however, when it comes to those biases that affect their professional assessments that they need to be more careful and aware of those biases.
I think over-confidence leads to impaired judgment. It’s especially galling when a patient directly calls their attention to the possibility of a misdiagnosis and they dig in their heels.
I was misdiagnosed for over 9 years. I had decided to get a meter just because I thought it would be nifty. I would test every few months and always was normal, until one morning years and years later I was higher one morning and then a few mornings more. I went to the doctor, told him I had an uncle who had had type 1 and he did an A1C, which was in the low 5’s, said I was just having a fluctuation, don’t worry about it. Same thing next year, but now in the higher 5’s.
Moved, higher stress, sick, dog that died, numbers shot up within a few months to over the 200’s. New doctor, they ran tests I’m now in the mid 8 A1C. I asked the new doctor if I could be a type 1 as my uncle was and I knew it ran in families, no you’re a type 2. Several drugs, all made me sick, put me on long acting insulin, because I couldn’t handle any of the drugs. Are you sure I’m not a type 1, again I ask the doctor? I have been a vegetarian since I was 11, I’ve been a vegan, I swim 75 laps a day, 5 days a week, I am slightly overweight but very active at work too. No you’re not a type 1, “the pcp doctor said the drugs wouldn’t have worked on me at all if I was a type 1.” My numbers are still going up so she sent me to an endo. The endo wanted to put me back on the medications that made me sick. I asked him are you sure I’m not a type 1? I had an uncle that died from being a type 1. No you’re not. Neither of those doctors ever tested me, I believe because I was overweight, not hugely but because I was, they assumed I must be a type 2. I refused to go back to that endo. I was not going to go back on drugs that made me sick
Next year, I decide to try a new doctor, an internist, who specializes in diabetes, my sugars went up to over an A1C of 11. I didn’t bother asking about being a type 1 anymore because I didn’t question both doctors previously not being right. The new doctor added a fast acting insulin, mind you from start to this point it’s now 5 years later. I thrived, my numbers immediately dropped to the low 7’s. As soon as they hired a new endo she sent me to her. That new endo tested me for being a type 1 without me asking or even me knowing she was doing so. The tests came back that I was positive for the antibodies and was not producing any insulin. She thought I would get upset, I didn’t. I was happy, finally it answered why? So I like to tell people if they say they are upset by the diagnosis, that none us us want to be a type 1, but be happy you were diagnosed properly. I now knew I couldn’t skip insulin like I did sometimes, I knew I had to have it. I was lucky I was put on at least a slow acting insulin fairly early.
@Marie20, I have seen so many posts like yours in several support groups. I am so pleased that you are doing so well now!
@Richard157 Thank You! I feel really lucky I seem to have no repercussions from so many years with the wrong diagnosis!
@taitaitai, that is interesting that a CDE ordered the corrects tests for you. It is so good that you are now correctly diagnosed.
Hello @Jules, I admire you for not being bitter. It is good that you are now correctly diagnosed!
Hi @meee, you are another example of improper diagnosing by misguided doctors. I’m glad you are here with us, and you can tell us about it.
Hi @Hammer, it is so good that you are now correctly diagnosed.
@Terry4, Melitta has written many important blogs about misdiagnosing of adults with diabetes. Those blogs are so well written, and very informative,
Thanks Richard, I’m glad too
Not even a little!
Welcome to TUD, Jules—hope you stick around!
Another common feature I see in this far-too common story. THIS, apparently, is the chief diagnostic method, probably dating back to the days before more rigorous tests were available and persisting because most cases are gonna be T2 anyway so why bother. Just give 'em Metformin and if it works, then they’re T2. Oh, and if it doesn’t work, it’s because they’re sneaking Twinkies on the sly, therefore T2.
Heads I win, tails you lose.