So, it’s been a while since I’ve posted anything here on the old blog, and some interesting things have occurred in my diabetes life since the beginning of the year. I’ve been struggling with processing some news I received last month and to find the words for this post, so bear with me.
On the 25th of January, I had an office visit with a new endocrinologist. For the purposes of this post, we’ll call him Doc B. Anyway, Doc B seems like a great guy. He was very easy to talk to, non-judgmental, and, most importantly, he was really interested in my case. In his words, “It’s unique.” Diagnosed with type 2 and CHF at 24, issues with medications not working, progression to insulin use within a short period, etc… But two things stood out to him. First, my c-peptide results indicate that I’m still producing a freakishly high amount of insulin. So, insulin resistance is an issue. I knew that already. And secondly, the results of the GAD65 antibody test that was done before the appointment came back positive. The report listed the result as GAD65 = 7.7 High. This would indicate an autoimmune component to my diabetes, and it certainty raised several questions.
My first question was how long the GAD antibodies had been present. Doc B looked back through my records and found results from 2 prior GAD65 tests. One from about 4 years ago, and one from the time I was diagnosed a little over 7 years ago. BOTH of those results were positive. What the fructose?! The word misdiagnosis quickly came to mind. And, at this point, it certainly appears that’s what happened.
In hindsight, how it happened is pretty obvious to me. A young guy walks into a doctor’s office with a yeast infection. He’s fat, his blood sugars and A1c are FUBAR, and there’s a family history of diabetes. So, he must have type 2 diabetes. The early test results were basically brushed aside in part because of the mentioned factors, but also because the doctor didn’t specialize in that stuff. And being new to all of this shit at the time, I didn’t know any better. Thankfully, I do now. But the more I know, the more it pisses me off that this shit happens.
So, the next obvious question is: what type of diabetes do I really have? I have characteristics of both type 1 and type 2, and don’t fall squarely into either one. So what the hell do I call it? Doc B seemed to think LADA/1.5 might be appropriate, but wasn’t quite ready to change my diagnosis just yet. He wants to do a few more tests before making that call, but it seems likely to happen soon. The one thing he did say was that the countdown clock on my pancreas function is ticking. Unfortunately, we can’t see the timer. Not exactly reassuring.
As far as treatment goes, not a whole lot is changing, regardless of what type I may have. I’m still on Humalog for meals and Lantus at night, Victoza, and Jardiance. And I will be trying Toujeo in the near future. That much I do know. And keeping that stable and consistent helps.
That still leaves questions in my mind about my advocacy efforts in the community and how a change in labels might impact that. I’ve identified as a type 2 for 7 years. That’s all I’ve known. That’s how I’m known in the community. And I’ve always been proud to support and advocate for people with all types of diabetes. That’s not going to change. I love my DOC friends and family.
To be honest, right now I’m feeling sad, angry, confused, and a million other things all at once. I’m like the hawk in the photo above, sitting on a lonely fence post between two fields, unsure of where to go next.