I was misdiagnosed for over 8 years. The first couple of years it was your blood sugars can fluctuate, keep exercising, lose weight and eat right. But the thing was I ate a very healthy vegan diet and swam 75 laps a day in a Gym pool… and kept getting worse. First it was metformin which partially worked until they tried to up the dose and I started literally vomiting after I took it. Then they tried various drugs, which worked some but not great, made me sick and I was steadily getting worse.
I had asked my GP if I could be a type 1 as I had had an uncle that was type 1 and at the time was told no, and my doctor told me that the drugs wouldn’t work at all if you were a type 1. But the drugs made me ill in one way or another. I have lots of allergies, but it could be I really needed insulin. I was commonly in the 300’s. I asked a couple of times if I could be a type 1. No, you’re not. She did add Lantus, but no information other than up it 2 units every 2 days until it works. Nothing about hypos or even any other information. I had to even ask how to give myself a shot. Lots of hypos at night.
I was then sent to an endo. I asked the endo if I could be a type 1 and was told no, you are a type 2. I believe because I was overweight I was automatically classified as a type 2. He wanted to put me back on the drugs that had made me sick, by the second visit I refused to go back to him. No one even suggested I should be tested, I didn’t even know tests existed. But I wasn’t going to take the drugs that made my legs swell up or a horrible headache and leg cramps.
I switched doctors and chose an internist hopefully thinking she would know about treatment. I had given up asking if I was a type 1. This was 5 years later, luckily she put me on a fast acting insulin. My numbers came down and I felt much better. But still no direction on taking insulin other than 1 unit per every 3 carbs you eat, Lots and lots of hypos. A nurse I ran across told me to keep oj by the bed. I learned to carry candy with me. My numbers still slowly kept creeping up. I thought I was a type 2, that my body could cope if I skipped a dose. That the new insulin I was switched to dropped me even worse at night so I stopped taking a nightly dose for my bowl of soup. Stupid things, but I didn’t know any better.
As soon as the practice hired a new endo my doctor sent me to her and that endo tested me without me even knowing. The second visit she sat me down and told me you are a type1. High on antibodies and no insulin production. I think she thought I would be really upset, I was happy, not because of being a type 1, but because it explained everything. Things made sense immediately. I then knew I had to have insulin all the time.
I am hoping doctors are more informed, but I don’t count on it. I still run across doctors that think I must have got it as a kid. The certified PT that didn’t have a clue recently that you could get it as an adult. That one is significant because she is skinny and is having BG problems and she is of Scandinavian decent. Not that she couldn’t be a type 2, but at least now she has the knowledge.The chiro about 5 years ago that said I could take an herb to help reverse it, and when I told her, no I have type 1, her reply was but you didn’t get it as a kid. She was a RN for years before becoming a chiro.
I learned so much valuable information from this forum especially, and also from other information on the internet. I was never given any instruction on hypos, dosing changes, or even carb counting etc. By the time I hit the 2nd endo I think it was assumed I knew what I was doing as I had already been on insulin for years. I cleaned up my act pretty fast when I knew I was a type 1. The right diagnosis is really so critical.
I was only properly diagnosed right about 8 years ago. I’ve been a type 1 for 20 years, since I was 46. It was a highly traumatic year. A dog almost died, then another dog did die, then my Father Law died and a month later my Mom died. 3 months later my fasting Bg level was high.
Very very frustrating. I am so thankful to that second endo.