Confusion and frustration

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#1

I was diagnosed at 19 with diabetes. I asked the doctor on if I was type 1 or type 2. He never could give me an answer. I was too young to be a type 2 and I didn’t need insulin, not a type 1. I was able to control it with diet and exercise pretty much. As I have gotten older, it is harder to control.

Four years ago, my doctor did test and decided my pancreas was not making insulin. I started off with 10 units of lantus. As time went on, I was up to 100 units of insulin and humalog at meals and sliding scales. He felt I was type 1. In the spring, I decided to get on insulin pump. I went from taking almost 150 units of insulin down to 60 units. My first A1C was a 6.5, I went to a new doctor I guess as a second opinion. To me, something didnt feel right. He ran tests and said my pancreas is making insulin an I do not have the antibody that shows I am a type 1. I came off of insulin. I was placed on metaformin 2000 mg a day, actos, javanvia, and glucotrol. Everything is maxed out. My blood sugars are running very high. I am still having to inject humalog. He is giving me one more month on this. He said my body may be making it, but I am not using it. He said we can go to byetta. I am thinking I just need to get back on the pump. The blood sugar levels were fine.

I just feel very frustrated…

#2

girrl, diabetes control is OUR job, not our doctors. they are there to guide us. If you felt you were doing well on the pump, find a different doctor! You may be type 1.5, you should research this and go to this doctor or find another one and say , LISTEN I THINK I HAVE THIS. Explain that you want to go on the pump, if they say no, you’re type 2, then find a different doctor! The meds are obviously not working, something needs to change before you do irreversible damage to your body!

#3

I completely agree with Sarah. Research, Read, Study…then go in with a fist full of questions and statements.

#4

Heather,

I would definitely lean more towards type 1.5/LADA. If you are finding that he is not listening, you can always “fire” him and find another endocrinologist. Having constant elevated blood sugars is not safe, nor is it healthy.

#5

I would request that you have your c-peptide levels checked again, as well as a full antibody panel (anti-GAD, anti-islet, etc.) When I was first tested for antibodies, I was negative. However, when I was tested again a few years later, I was positive for GAD-65, and my c-peptide was almost undetectable.

For what it’s worth, I can relate to your struggle. I experienced a similar diagnosis path (I wrote about it here), and it was painful.

Hang in there!