Misdiagnosis with dangerous side effects

Hi. I am Barbara, a 57 year old woman who was misdiagnosed with Type 2 diabetes 15 years ago. I was extremely tired and had a cottony mouth all the time (no thirst) Well some routine blood work showed me with a blood glucose level of 386! Since I was not overweight they put me on oral meds and assumed that I was type 2. That wasn't working and a different doctor did a C-peptide test which was in the normal range. I was then given many samples of rezulin which seemed to be doing the trick except that I began to feel sick all the time, constant diarrhea, looking jaundiced. My doctor insisted it wasn't the rezulin. However I read an article in a diabetes journal that said that a small percentage of the population was having liver failure as a result of the drug. I insisted that my liver enzymes be taken and they were crazy high. An emergency trip to the Mayo clinic confirmed my suspicions where they told me that I should never have been placed on meds to begin with when my bg was so high and I was not overweight.
The moral of the story is the power of self education and the dangers of a medical profession that are given new meds like candy to distribute to their patients.(Rezulin has since been pulled from the market) Whenever I take any medication now I do my own internet search on side effects as it seems like I am a member of that small percentage of people that has a difficult time clearing drug toxins out of her system. What I really needed was insulin and I am very grateful to have been given the opportunity to figure that out. That's my story.

Wow, I am sorry you had to self-educate, but the fact is the vast majority of doctors have absolutely no first hand experience with the medications they prescribe or any first hand experience to draw from with the conditions they are treating. With the very rare exception, we as patients have to think for ourselves, advocate for ourselves, research for ourselves and in many cases treat ourselves. You unfortunately had to learn that the hard way, and it sounds as though it was an extremely hard trip. If you are lucky enough to find a physician who actually listens to you and makes you a partner in your own care then you have found a very rare person indeed. I'm very glad you figured it out, even if you did have to do it on your own. The information on this site is superior to any I have ever gotten from my doctors or CDE. But a lot of the information is unfortunately from stories like yours.

Thanks Clare,
It was one of those experiences that shaped me, including a moment of awareness when I was able to step outside of my fear of dying and feel myself supported and a tiny part of some infinite love. Not bad, huh?
I don't tend to walk around in that state of mind. I am glad to have been introduced to this site. There is actually something very de-isolating about speaking to others with late onset diabetes, as even at the tender age of 57 I try to grapple with this disease. I am counting on it all teaching me something. Of course, that being said I would be happy for a cure. Very, very happy.

We all would Barbara, we all would

Hi Barbara: Sadly, for adults with new-onset Type 1 diabetes, misdiagnosis is the norm, not the exception. That remains true today. You are fortunate that you persisted until you got the correct treatment! I have written a manifesto for the misdiagnosed that you might relate to! Manny Hernandez, founder of TuDiabetes, has LADA but was initially misdiagnosed as having Type 2 diabetes.

Hi Barbara (from another Barbara), I have a similar story of mis-dx but without your side effects. I was not overweight, but it was assumed that my high bg was steroid induced and would 'go away'. I started on a worthless sliding scale, and had an awful time for a couple of years on type 2 meds and insulin. I was eventually dx an 'insulin dependent T2', and so was able to get a pump.

When c-peptide and GAD were done, I was finally properly dx T1.

Welcome to our wonderful community!

I was diagnosed T1 at 53. Never thought I'd be grateful to be near dead from DKA, but reading journeys like yours makes me feel strangely fortunate not to have been misdiagnosed. Sorry for what you went through.

I've also learned more here than from doctors & a CDE. I won't go into how useless my diabetes (un)education classes were.

My first instinct is to decline meds. My doctor has been pushing statins for 4 years as "prevention" despite good lipid panels. He gives me an Rx. I throw it out.

Glad you found us.