Seeking stories of misdiagnosis

Well, I had a visit with my endo this week and learned about my test results. My endo ordered a GAD65 as well as another c-peptide. My GAD65 came back negative, which, with some level of confidence shows I am not an autoimmune diabetic. I would have liked to resolve my ongoing saga, but my story continues. I had thought I was seeing improved blood sugars these last three months, I’ve been very disciplined, following Dr. B’s diet and exercising. I’ve been using Intermittent Fasting and I’ve lost several pounds, now wavering right at 200 lbs. But this segment of my story remains curious.

My HbA1c and fructosamine are unchanged, despite moving from 2 to 3 medications.

My HbA1c is still the same as when I started with this endo on year ago and we initiated all this medication intensification.

My c-peptide came in at 4.5 ng/mL, with a fasting BS of 131 mg/dl. My last measurement was 1.8 ng/mL at a similar fasting. My endo now declares me “severely” insulin resistant. Of course, he said the low reading of 1.8 also “meant nothing.”

I again reminded him that I was fine moving to insulin and would like to get my fasting down, he refused, noting that insulin causes hypos and will make you fat. He gave me three options, increase the Actos, switch the Byetta for Victoza, and/or he would prescribe the Medifast weight loss program. He could not give me one good reason to back up switching to Victoza, although I will consider it. I agreed to increase the Actos, and as to the Medifast, I just shake my head. I am already lean. The Medifast is a medically supervised starvation diet. My endo is unfortunately not really competent on the weight, bodyfat, fitness thing. And the idea that he would even tell me on one hand I should avoid insulin because it will make me fat, but on the other offer to prescribe Medifast is just “weird.” If my fate is to suffer a medically supervised starvation, then just give me the d*mn insulin.

So this whole thing has been quite disheartening. I had hoped for some resolution, but my saga continues. Basically, up to this point, I’ve been able to achieve blood sugar control using diet and exercise alone, that have keep my numbers in a reasonable region, but things are getting worse. Although I have some neuropathy problems, I am not at risk of DKA and accelerated damage. But, none of the medications seem to work in the long-term. I will have a disruptive improvement, and then zippo. And it is this disruptive improvement that is weird.

I moved my Actos from 15 to 30 on Wednesday. By Thursday, my blood sugar had improved and I saw all the signs of a “honeymoon.” I’ve had these before. My fasting blood sugar drops 30-50 mg/dl to normal levels. My blood sugar no longer skyrockets with exercise, and I can eat “whatever” and still have my blood sugar return to normal levels at 2 hrs. This has happened before, it appears triggered by medicine changes and they last 2-3 weeks and this has recurred a few times.

None of my doctors believe this honeymoon thing. So, as you will see, I gave myself an OGTT (https://forum.tudiabetes.org/topics/human-self-experimentation) and passed, I am no longer diabetic (yeah, right). Last night, I had four maki sushi rolls (24 pieces), approximately 125-150 g of carbs and my 2 hr postprandial was 84 mg/dl. I expect in another 2-3 weeks, things will stop working again and I will be back to where I was.

So for now, I will drown my sorrow over my diagnosis failure by treating myself. I am going to eat some of those things I enjoy, but have placed in the off-limit column. And when my blood sugar takes a turn for the worse, I will return to my strict diet and my ongoing efforts to find out exactly what is wrong with me and how to treat it.

Thanx to all of you for your support.