I've suspected that I have MODY for a while, mostly because my father and I have the same bizarre thing that keeps progressing and because of my "atypical" T2 presentation (yes, yes, I know, but I was Dx when I was 18 and I've never been anywhere near obese and don't have a single indication of metabolic syndrome and...bear with me here).
I did a paper on MODY this semester and found that, according to one of the studies, there's a greater than 75% chance that I have MODY 3 based on my lack of metabolic syndrome, lack of obesity, and low hsCRP (they say under .4, mine's .3).
I really, really want to be tested for MODY, but I'm not willing to fight with my endo's office for insurance crap (they're terrible about stuff like that). My endo once mentioned MODY to me, so I know he's aware I might have it. It's something I intend to bring up at my appt at the end of February. I don't know that he'll be willing to test me (for various reasons), but I really, really like him and don't want to go through the runaround of trying to find a (normal) new endo.
He was okay with me getting tested through the Kovler Diabetes Center last year, but they ended up not taking me because I don't have a three-generation family history of MODY (which we don't even know for sure because my father's parents died more than 20 years ago and it's entirely likely they were undiagnosed). Does anyone know of any MODY research centers that test for MODY if you qualify? I've tried looking and I can't find anything.
I’ve been talking to my doc about MODY testing too. He said he almost never does it because its outrageously expensive, highly rare that it actually clarifies a diagnosis, not covered by insurance, and regardless of the results wouldn’t change how he advises his patients… I don’t know how much of that is true but that was his position. He did say that I could be a mody 3, I’m which case sulfanureas (sp) would be appropriate in addition to insulin, but he said since I manage insulin so well with essentially no hypos all that the pills would likely do is increase liklihood of insulin causing hypos. He did enroll me in a trial, but its not exactly as he had explained— he indicated they would screen me for MODY in the process but now that I have all the info it turns out they just want to do genetic profiles and antibody testing on my kids to see if they are at risk for T1 diabetes and enroll them in trials of preventative measures if so. So apparently getting tested for MODY isn’t as easy as we might hope
If you can't find a way to get tested can you get your dr. to treat you like one anyway? Seems to me trying insulin on you wouldn't hurt anything. I don't understand why drs. don't want to do this.
The problem isn't the treatment here, since I actually seem to be doing well on Cycloset, it's the diagnosis itself. For one, I'd want to know before I start dating (religious Jews don't usually date for recreation), and for another MODY 3 sometimes has mitochondrial issues, which would explain my fibromyalgia. (And is it really bad if I'm curious?) Honestly, MODY would explain so much.
My endo is adamant against insulin. The only time I ever asked him, there was dead silence for about an entire minute before he said absolutely not...I think I shocked him. I'd be happy to try it when Cycloset stops working (because, with me, these drugs apparently don't last long.)
Yeah that doesn’t surprise me I don’t think they’ll even start considering insulin unless you are getting to fasting levels probably 250+. They don’t prescribe it lightly…
When we start dating, it's for the purpose of finding the person you'll marry and not to have a boyfriend or girlfriend. And at some point, when it gets serious (which usually happens within a couple of months), you have a conversation about...stuff. This would be one of the things brought up--and if it's MODY, this would be THE biggest thing I need to talk about. After all, they would be his kids, too. I don't know if I'm explaining this right and I might be making it sound waaaay weirder than it is...
Regardless, that makes sense. I always feel bad that my kids got my crap genes and are having bg issues. My 21 yo seems to be pre-diabetic and my 25 yo is low carbing and doing good with that for now.
