I’ve been waivering on telling my story. The reason? I still don’t have a diagnosis. Here is my saga.
Diagnosed t2 in 2005, I had a HbA1c of 8% and had apparently had blood sugars (for several years) above 126 mg/dl. I had always been thin, weighing 150-160 at 5’11" in college. I had crept up to 205 lbs by the time I was diagnosed. Through changes in diet, exercise and metformin I was able to bring my HbA1c down to an amazing 5.7%. I weighed 175lbs and I started weight training. My fasting numbers were still elevated and about 6-9 months after diagnosis, I started Dr. B’s diet. Those days, were essentially the best blood sugars I would see. My HbA1c crept up into the 6s. I stopped metformin in the next year and restarted 6 months later. Metformin had no effect on my blood sugar, either HbA1c or readings. I continued weight training, gaining muscle and losing fat. In 2008, with my HbA1c still in the low 6s, I did the metformin experiment again, 6 months on, then going off. Metformin had no effect. I started asking for tests. I asked for c-peptide and I asked for antibody tests. I then tried Byetta alone, same thing, no improvement. Repeating my requests for tests at every visit after about a year I was granted a c-peptide. My c-peptide came in at 1.8 ng/ml, within reference range, but low and coupled with my fasting blood sugar of 130 mg/dl, a sign that even I knew signaled insulin deficiency. I was told the test said nothing. Despite my efforts, I also started to have a some emerging complications, particularly some peripheral neuropathy in my hands. I started asking for antibody tests and insulin. After the third visit with my repeated requests my doctor finally told me to either go see another endo or a psychiatrist (did I mention I am a difficult patient).
So in mid 2009, I started visiting a new endo. I selected one who seemed to have good credentials. At my first visit it seemed encouraging. He did agree that my blood sugars were too high (fasting 120-140 mg/dl). and my medications were not working. He did not feel that my c-peptide meant anything and was reluctant to conduct further tests. So we started escalating my medications. First adding back metformin to my Byetta. I had some initial success, for about 2-3 weeks my blood sugars improved. Then about a month later I had another bout of improved blood sugars again for about 2 weeks. This was enough to drop my HbA1c 0.4% at my next visit. Seemingly happy days. But except for those two short “honeymoons” my blood sugar was unchanged. On my next visit, no honeymoons, my HbA1c was right back where we started. So we increased my medication and finally after two years, my endo has requested a GAD. The increased medication has improved my blood sugars. I have the GAD test taken in two weeks and we shall see.
In my case, I had always been thin. I had gained weight before my formal diagnosis, but since then I have made major changes. I have lost significant fat and gained more than 40lbs of muscle. My waist is actually smaller than when I weighed 175, but I now weigh 202 at about 15% bodyfat. In truth, some of my adventures have been complicated by my actions, following a very strict diet and being aggressive about exercise have problably masked my condition, kept me from losing control and ending up in the ER in DKA.
I accepted my condition a long time ago. Whether or not I end up antibody positive and a T1, I’ll be going on insulin in not too long and that is fine. Perhaps I should have taken control of the situation some time ago, ordered my own test (I can do that) and just marched right down to Walmart and gotten my own insulin. But this has become more than just a question of my treatment. I want my doctors to do their d*mn job. They have displayed continued incompetence and it really irks me. I want to make force them do their job so that others don’t have to spend years like I have.
It’s rough.