Were you misdiagnosed?


#1

We often read about people whose doctors diagnosed with o e type of diabetes, and at the end, it was not the correct type. Was that your case? Were you misdiagnosed?

  • Yes
  • No

0 voters


#2

When I was diagnosed it was Juvenile Diabetes.

Then it was Insulin-Dependent Diabetes a few years later.

Then it was Type 1 diabetes a few years after that.

I think all the above are the same diagnosis and none of them “wrong” but maybe not.

I do not think we are doing ourselves any favors by subdividing ourselves too finely.


#3

My general doctor made the right call, Lada Type 1 based on symptoms and referred me to an endo who ordered labs and confirmed it. I was pretty far along and probably close to DKA when I went in, probably made their job easier.


#4

The thread subject and the actual question are contradictory in how they’re phrased. I at first clicked “No” because I was coming in with the question “Were you misdiagnosed” in mind. Could be confusing for others too.

I was dx’d “juvenile type” diabetes at age 28 in 1983, which is what it still says on my medical record (T1/T2 wasn’t a thing yet, though my diagnosing doctor, a plain old GP, told me about it). Still astounds me how many are mis-dx’d T2 because of their age. Never even heard of that happening before joining this site.


#5

at first my dr wasnt sure. she said type 2, then it came as type 1 but once i was at the endo’s office it was LADA. then it became type 1…when it was LADA it was when i was 29 then type 1 was when i was 31.


#6

Better now? Thanks for pointing it out.


#7

Now I’m confused - with the original question wording I answered “yes” meaning I was NOT misdiagnosed. (I was a pretty textbook case of “classic” stereotypical Type 1.) WIth the rewording, now it seems I should have answered “no” to the question.


#8

I was diagnosed by my original Dr and the original Endo for a few years as a type 2. I had a really good diet, being vegetarian since I was 11, was swimming 75 laps 5 days a week at a gym pool. I had no other health issues but the medications they tried me on made me sick and didn’t work well. I was overweight and in my 50’s. I believe that’s why they never bothered testing me for type 1 even though I asked both the original Dr and endo about it as I had an uncle that died from type 1 in his 30’s.

I changed Drs and she put me on insulin and I literally thrived on it. I had given up asking if I was a type 1 as the other Drs and then that endo had said a definite no, you’re not. But my new Dr sent me to the new endo my group had hired and she tested me without me even knowing she was and told me I had type 1, LADA, I had the antibodies and she gave me a copy of the testing to show the results. I am still so thankful to her for doing that.

It has kept me healthy, knowing what I have to do to manage it. Before I would skip fast acting insulin shots because I would just think my body can deal with it. But now I know it can’t. The original endo wanted to put me back on the medications that made me sick and I refused and never went back to him again. I just can’t help thinking how many more LADA’s are out there not diagnosed.


#9

The VA told me I was type 2, and we went through all the different meds. Most did NOT agree with me! I asked a few times to be tested, but the VA Dr said there was 'no way any of that would apply to me."
I finally found out how to get the VA to cover me at a private Dr.
Within 5 minutes the new endo said I was type 1. And the tests proved it as well.


#10

I wasn’t misdiagnosed. I was NOT diagnosed, for YEARS. Same thing happened to my wife.


#11

I was misdiagnosed as a type 2. It was the nurse who decided to do an additional test and then I was correctly diagnosed as a type 1. I am forever grateful to that nurse.


#12

Diagnosed as T2 with BG of 425. Doctor said no need for any tests, obviously I was diabetic. Turns out I am T1. This was 20years ago. I’ve been on insulin over 19 years and pumping for over 18.


#13

December 28, 1986 - I went to the doctor with weight loss, thirst, irritability, nausea, fatigue, etc. He said that I had the flu and sent me home. He could have checked my blood sugar with a Chemstrip, or for ketones, or sent me to the hospital for a blood test (literally across the street). Six hours later I was in the emergency room with severe DKA and a blood sugar of 998, and they still tested me for drugs, etc. I spent 8 days in the hospital. So, yes, I was misdiagnosed, and almost died.

Good news, once they finally clued in, is that I was diagnosed with Juvenile Diabetes at the age of 21, and was given some pretty good, if basic advice, and was sent to a class about diabetes. Humulin N & R (for +30 years), and now pumping for about 9 months now (yeah!).


#14

Hmmm… I don’t know if I am misdiagnosed… very likely…

I was diagnosed with gestational diabetes during the first weeks of my first pregnancy by my lovely endo. He still insisted it was gestational when it didn’t go away after I delivered my baby. He still called it gestational during my second pregnancy, asked me to do a glucose tolerance test even though I was taking insulin at the time (I actually laughed in incredulity at that request), and still told me to stop taking insulin after my second child was born. I ignored him. He is now my ex-endo.

My current GP labels me as T2. Despite the fact that oral medications didn’t help at all, despite the fact that I use insulin to maintain my close to normal sugar levels. But despite this he is a good guy, and leaves my diabetes management up to me… simply keeping records of how I manage, and making sure I do routine testing of general health parameters… which continue to be fine… aside from the diabetes and thyroid issues…

My daughter’s endo suspects Mody of some type, because she says she’s never seen a T1 with such good and apparently ‘easy’ control (she doesn’t really acknowledge the benefit of strict low carb eating) … but Mody may explain why both my kids have slowly rising hba1cs (or some sad combination of paternal T2 and maternal type Weird).


#15

I was a very classic case of a 5yo drinking and peeing a few months after a viral illness. My mother diagnosed me (she is not medical, just clever), and carted me and a pee sample along to the GP. I was only just starting to lose weight, and not at all unwell. No DKA for me!
I had a 2 hour fasting 75gm glucose tolerance test the next day, which after having 4+ of glucose in my pee, was probably a trifle unnecessary.
I can still remember the fear on the face of the junior doctor at our local hospital as he tried to put a butterfly in my hand to take blood from. I was a tough little girl and told him to relax, and I promised not to make a fuss or cry.


#16

Developed diabetes at 32 (just after my daughter was born so I joke that I got post-gestational diabetes, since my wife had gestational diabetes) and was misdiagnosed as Type II.

After begging multiple doctors in multiple countries to test me for Type I (who all refused and assured me I was Type II) finally an endo saw my BMI and stats and just told me over the phone “I’m sure your Type I, let’s get you tested” without even meeting me!

Been on insulin and proper care ever since the day of those lab results.


#17

I checked no because the poll seemed to be asking if you were an adult and were diagnosed with type 2 instead of type 1, but I was rediagnosed with the flu after I’d already had the flu for about a week but my symptoms had drastically changed and no one figured it out until I was in a coma with a BG so high the hospital couldn’t measure it.


#18

Because of my age 56, at the time and because I had no ketones, I was diagnosed as Type 2 by my local GP. I was fit, carried no excess fat but had a reading of 27.3 mmol/L about 490.
About six months later I was correctly diagnosed as Type 1 by my still current endo.
This October will be my 10th year but I always say that the 13th September 2008 when I had a head cold to be the time diabetes started for me. By April the next year I was on insulin as no amount of exercise or hard work could keep my BGL controlled.


#19

Yes, gestational in 1983… when it didn’t go away after the birth, assumed it was t2 (this was pre-LADA) …surprise, endo diagnosed t1 a few years back.


#20

No question. The coma kinda made it pretty clear what I had! That was a long, long time agao.