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View Full Version : Misdiagnosed 10 yrs ago


Lex4153
06-26-2006, 10:19 AM
I'm new here, wanted to tell my story. I was diagnosed 10 yrs ago and was never able to care for my diabetes because of the misdiagnosis.

At 13 yrs old, I was diagnosed with Type I diabetes. I was prescribed insulin and for a few years I tried earnestly to eat right, exercise, and take the shots. But my blood sugars never leveled. They were either too high or too low. Eventually, I gave up when I was about 16 or 17. I stopped treating my diabetes all together. I didn't touch a meter or needle for three years.

When I returned to the endocrinologist finally, scared that I was destroying my body, he was shocked to learn that I was alive and relatively well after not taking insulin for so long. He thought that I might be Type II because of that. He said if I were Type I, I should have been dead! But he didn't order any tests or try any oral meds. He said that if I had a hard enough time with insulin shots, oral meds would be even harder to control my diabetes with. I trusted him.

I started taking shots again, watching my diet, and taking blood sugar readings. But I eventually gave up again. I couldn't control my sugars, my appetite was immense, and my weight soared. I couldn't stop eating, which made me feel guilty, and to compensate I would take more insulin which made my appetite increase. It was a never ending cycle. I stopped taking the insulin again. I really felt better not taking it!

Eventually I went to visit my family doctor, a physician assistant actually. This was a few months ago. When I told her my story of how difficult my diabetes was, she immediately ordered some bloodwork done that would confirm what type of diabetic I was. The first test was inconclusive. The second took A LOT longer, but eventually I got the call that I was, indeed, TYPE II. I was happy but soooo angry. Happy because now I could finaly start treating my diabetes appropriately but angry that for ten years I had tried again and again to take care of myself and failed. My weight had shot up and I had just felt miserable the whole time. I always thought, "Well, maybe if I didn't eat so much" or "Maybe if I exercised more" I could have done better. "Maybe if I weren't so LAZY!" But all along it wasn't my fault. The docs had just assumed because I was 13 yrs old that I was Type I.

I started Glucophage (500 mg) right away and Byetta (5 ml). My blood sugars stayed the same, hovering around 250. But I dropped 15 lbs in six weeks without even trying. No eating differently, no exercising. It was a miracle worker. I'm hoping to lose another 5-10 lbs and I'll be slimmer than I've ever been.

Last week they upped my dosage of Byetta up to 10 ml. I instantly saw results. My blood sugar dropped from 250 to 126 the next morning!!!! I've been so deliriously happy that I finally found something that works TEN YEARS LATER! It's been so long.

Thank you for listening.

JediSkipdogg
06-26-2006, 10:30 AM
I'm glad you finally have something that works. Unfortunately, the old idea of treating diabetes is that if you are a juvenile, you are Type 1 and get insulin, if you are an adult, you are type 2, and get oral meds. 10 years ago I could see that as still the methology of treatment. Today however, we know juveniles can and often are getting type 2 and adults are getting type 1.

Sorry you had to be one of those in the confusing group. Hopefully the mistreatment didn't ruin your life and your body too much. Glad to have you a part of this forum and we hope to see you posting more.

am1977
06-26-2006, 11:14 AM
That must have been a very aggravating thing to deal with :mad:... I have to agree with Jedi, many still believe that if you have Diabetes as a child or in your teens, it's Type 1 diabetes... But I don't think that people can now just assume that. The prevelance of T2 diabetes in the young is growing and growing- most likely due to the lifestyle choices and diet that young people are choosing. Sadly, this country is becoming a "fast food nation" and that's far from ideal.

Out of curiosity, what were some of the symptoms you presented with when you were first diagnosed as type 1? Were you in DKA? Did you lose weight w/o trying, were you extremely thirsty, etc? Because if you answered yes to these questions, I could understand why there was confusion. Those are the classic symptoms of Type 1. But if they just decided to put you on insulin, b/c of your age, then I think they made a big error.

In any case, I'm glad that you are now gaining control of your Diabetes. It's better late than never... and I'm sure you are saving yourself from some major complications down the road.

Hopefully, your blood sugar is well under control now and I hope you will keep working at it. I think with continued effort and determination, I'm sure you will continue to see good results :)

Lex4153
06-26-2006, 11:54 AM
My symptoms included frequent urination and moderate thirst, but nothing that was noticable to me. I was diagnosed after a routine doctor check up when they found sugar in my urine. I had lost maybe 10 pounds but nothing significant. I remember the docs remarking how healthy I seemed despite everything. My blood sugar at the time was around 350, no ketoacidosis. Not sure what DKA is?
I'm unsure why they automatically assumed I was type I without questions. My great aunt is a type II and she was diagnosed at 13 yrs old also, again, mistakenly as a type I. I'm also unsure as to why the endocrinologist didn't think type II meds wouldn't work. I'm doing better now than I ever did on insulin shots, granted it hasn't been that long.

Thanks for the welcome!

am1977
06-26-2006, 05:27 PM
My symptoms included frequent urination and moderate thirst, but nothing that was noticable to me. I was diagnosed after a routine doctor check up when they found sugar in my urine. I had lost maybe 10 pounds but nothing significant. I remember the docs remarking how healthy I seemed despite everything. My blood sugar at the time was around 350, no ketoacidosis. Not sure what DKA is?
I'm unsure why they automatically assumed I was type I without questions. My great aunt is a type II and she was diagnosed at 13 yrs old also, again, mistakenly as a type I. I'm also unsure as to why the endocrinologist didn't think type II meds wouldn't work. I'm doing better now than I ever did on insulin shots, granted it hasn't been that long.

Thanks for the welcome!

Lex,

DKA is Diabetic Ketoacidosis. And I see from what you wrote that you didn't have this...most type 1s are in this state at diagnosis. I was- my blood sugar was over 600 (it read HI on the doctor's meter)... and I was spilling ketones. Not to mention, i was ridiculously thirsty, exhausted, skinny as a rail, and also had pretty sever muscle aches. It wasn't fun. :thumpdown

I know some of the symptoms are similar for T1 and T2s, like the increased thirst and frequesnt bathroom visits. I guess that also can make things a little fuzzy... but seeing that you weren't in DKA and weren't feeling or didn't appear in that bad of shape should have made the doctor look a little further into what was going on.

But I guess we can't change the past... all you can do is do what you can to manage things now. And from the sounds of it, you are putting the effort in and trying your best...which is all that anyone can do :top:.

Take care :ciao:

kgm0612
06-27-2006, 05:35 AM
Welcome to the forum. I'm sorry to read of your troubles the last ten years, but happy you have finally been properly dx'd.

Now............you have to put the past behind you and move forward. Each day gets a little easier than the day before. Good luck!

Karen

KickStart101
07-05-2006, 02:12 AM
Hi Lex: I'm glad to see you here. I hope that you succeed in this
battle that you/we have. Best of Luck and feel free to ask anything
that you want to know. :)