Changing my diabetes label
“No one today is purely one thing.” ~ Edward W. Said
So, back in February, I shared that I was feeling caught Between Two Fields. I shared about the discovery that I had been misdiagnosed with type 2 diabetes when what I was actually dealing with was more than likely LADA, or Latent Autoimmune Diabetes in Adults. I also mentioned that my new endocrinologist wanted to do a few tests to get fresh data to confirm what we were suspecting. Well, that’s happened. And I got the results and new label during my office visit on April 21st.
The new C-Peptide test and GAD65 autoantibody tests confirmed that there are both insulin resistance and autoimmune components to my diabetes. My pancreas is still producing some insulin, but I’m also positive for the GAD65 autoantibodies. Based on those results, and the fact that I’m also apparently dealing with some autoimmune issues with my thyroid, my Endo felt it appropriate to change my diagnosis to LADA, as that more accurately fits my case. I was expecting that and really didn’t have a problem with it until I was reviewing my visit summary sheet after the appointment.
Seeing “Diabetes mellitus type 1, uncontrolled” on my chart after seeing type 2 in that spot for the last 7 years has stirred so many emotions. I’m happy, angry, sad, confused, and a million of other things all at once.
I’m happy to know why I’ve struggled for so long with treatments not working as they should, and to now have a regimen that we think will help going forward.
I’m angry that I was misdiagnosed when there was evidence of an autoimmune component so early, yet was overlooked because I fit my doctor’s definition of a type 2 patient. It pisses me off that doctors are just as guilty of perpetuating the stigmas surrounding the types of diabetes as the media. And what’s worse is the knowledge that I’m not alone in this. This bullshit happens all the time. And in this day and time, there’s just not a good reason for that.
Having said all that, though, at the end of the day, the label doesn’t matter as much as the treatment. I’ll be continuing my regimen of Humalog, Lantus, Victoza and Jardiance for now. That combination seems to be doing something positive as my A1c was down to 7 this time around. It’s a work in progress.
And, at the end of the day, changing my diabetes label isn’t going to change me as a person. I’m still the same guy that everyone in the community has come to know and love.
As for my advocacy efforts, this change is only going to serve as a spark of motivation to do more.
I’m still going to be advocating for people with all types of diabetes; Type 1, Type 2, LADA, Gestational, MODY, etc… you’re all my type. We all deserve encouragement, love, and support. You all have mine.
Admittedly, I am struggling with the idea of changing the focus of this blog and the possibility of rebranding. The initial fix may be as simple as changing to tagline to be less type focused and more inclusive. “Living with a lazy pancreas and a broken heart” kind of has a nice ring to it. We’ll see.
And then, well, there’s rewriting my story page after 7 years…
; to be continued…
Hugs to you, friend. Fight the good fight, we’re here for you. <3
Mike. I recall how hearing my doctor say I was type 2 after years of knowing I was type 1 felt., I was like whoa guy lets get something right off the bat. He had pressed a wrong key and apologies ensued. but apologies for what? And what was my reaction about? I mean let’s face it type 2 is the same outcome with a different cause. Yes, it was eye-opening on many different levels. In the end, I was the same guy, with the same disease. it was then cause seemed pretty unimportant.
Also I referred your blog to the TUDiabetes blog page for the week of May 2, 2016. 🙂
Good tag line. Sucky diagnosis.
(Though a sucky diagnosis IS better than a wrong one!)
Eep! I don’t think anyone, even ourselves, realise the impact being “reclassified” has! My diagnosis has swayed between type 2 and type 1b for the past few years and I’m about to received some results that may change all that. It’s crazy!
Hope you’re coping well with this small but big change. The most important bottom line is that we get the appropriate care and support that we need no matter what type of diabetes anyone has!
I am in the same spot as you were prior to your reclassification. Everything points at LADA except my Dr. I’m insulin dependent with no resistance and get frustrated with the doctors. But the treatment will be the same no matter how I’m classed