Between Two Fields
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.
Oh Mike. Hugs and support and love. No matter what happens down the road, you’ve got this.
For the record Mike, I only know you as an advocate and a Person With Diabetes. Types don’t mean anything to me. Hope you get answers soon, and real ones you can trust.
I’d be pissed off too. And wondering how this was missed.
I know two people from my local group who were mis-Dx as having T2. It does happen, but it doesn’t making it any easier knowing this if you are one of the people it happens to!
Hang in there, buddy. Know that you have support from a lot of online friends, and that some of them are looking forward to giving you a real hug in three weeks!
You’re still our friend and a great photographer.
And now you have a doctor who is working with you to find the correct answers.
Remember – one day at a time…
If your diagnosis changes, would that remove your advocacy role in the Type 2 community–or just change it? Maybe you stay in the community but as an advocate to make sure folks are getting proper diagnoses and then receiving proper treatment? I’m a firm believer in “If it can happen to me, it can happen to anyone.” Not that you want to go make everyone with Type 2 question themselves, but maybe you serve as some kind of “Heads Up!” story.
Being told you are no longer “part of” something you’ve identified with for years can be tough to grasp, absolutely. And I don’t know too much about the community there, so this may come across as incredibly naive. But I suspect they’d still embrace you, embrace your story, and see all the wonderful things you can bring to the community and to diabetes advocacy.
Sending you lots of calming, stress-free vibes during this time.
Mike, sorry to hear that you are going thru such hard times. Luckily you’ve found a Dr that seems to know what he’s doing and is going to work thru it with you. As to the community, please don’t think that your friends will care if you are a T1, T2, or Tunknown. Advocating is helping and you can still help. As Jaclyn said above, it’s so true that “If it happened to me, it can happen to others.” That is a very important lesson to advocate. Good luck in figuring it all out.
I am sorry this came your way, creating even more uncertainty and stress to what you’ve already had on tap. Hopefully, this doc can help bring more clarity (if ever possible?) to your D and Health World. As to DOC and D-advocacy, I know you’ll do whatever fits your world best. Thanks for all you’ve done and will continue doing for the community. Sending you my best, Mike.
I can understand how tough this all feels. (Okay, I guess, actually, technically I can’t, but I can certainly empathize.) But no matter what, you will always be my type and I’ll always support you!
Glad you found a better doctor. I, too, was initially misdiagnosed. Age, stereotypes, our society’s obsession with weight. The Sweet Lowdown, the play I wrote in response, can still be viewed on YouTube. Diabetes is more a continuum than an either/or dichotomy. As an advocate, we need to bring a better, more scientific view of diabetes to the world.
I volunteered at The San Diego Center For The Blind for many years. We had a few men that were wrongly diagnosed, then under treated, and then showed complications very rapidly. Even after one man was told by an endocrinologist he was a type 1 1/2, his primary care doctor still refused to believe in such a thing being possible!!?? So please keep doing what you are doing whatever “type” category of your blog.
I know the feeling well. They didn’t even mention a Type almost seven years ago when I was gifted with the D.
Your endo sounds like he’s looking at YOU, not what box to put you in. No better demonstration of YDMV.