I'm a pretty unusual diabetic, been called almost every label in the book over the years, including Type 2, Type 1.5, Type 1, LADA, and MODY. The labels never seemed terribly important, but it occurs to me that I may actually fit the MODY label quite well. I'm not sure how much this matters, but even if it has minimal treatment implications it's nice to try to get some clarity on what's going on with my body.
I was diagnosed in 2002 with a high end of pre-diabetic range fasting BG of 120 or a few points higher and a solidly diabetic, but not crazy high, oral glucose tolerance peaking in the mid-200s, and A1c of 5.6, no symptoms, got picked up in a random physical. I subsequently had an oral glucose tolerance test with insulin levels monitored, and my endogenous insulin production was clearly deficient, with no indication of meaningful insulin resistance. My phase 1 post-prandial insulin response, i.e. my body's ability to marshal insulin to cover carbs, was very poor, but my phase 2 response was pretty robust, keeping my fasting and average BGs in check. If it's relevant, I was (and remain) pretty lean and athletic.
I was briefly put on a sulfonylurea, to which I was somewhat responsive, then within a few months basal insulin and a few months after that bolus insulin. I switched to insulin because my doctor (a leading diabetes researcher) and I agreed that a fairly aggressive approach to preserve beta cells and extend the honeymoon was warranted, and I had no qualms about starting insulin. Oddly, I don't recall the question of underlying mechanism, i.e. MODY vs LADA, being central, the gist was that whatever the cause, insulin would keep my BGs as normal as possible.
Over twelve years since, my endogenous insulin production capacity has gradually declined, though I still make a little insulin. My c-peptide results demonstrate impaired endogenous insulin production, as expected (though no one told me not to fast for those so I'm not even sure how meaningful they are). When doing intense physical activity like alpine climbing or trekking or road biking, I do just fine with zero basal or bolus insulin, except for some bolus insulin in the evening with dinner. During everyday life, I was on multiple daily injections until recently taking 12 units of basal evenings and a little more than that of bolus over the course of the day, on a moderate carb diet. I just started a pump, where I'm currently running a basal rate of 0.375 per hour (which equates to only 9 units/day), I really had to reduce my basal rate on the pump, as many do. Eventually I'll start running different rates at different times of day. My insulin/carb ratio seems to be between 1/15 and 1/20 at different times of day, my correction factor maybe 1/75, but I still need to do some work to dial these in. My most recent A1c was 6.2, my highest ever, these days I'm between 5.8 and 6.2.
I haven't had antibody screening, I vaguely recall perhaps one was tested many years ago and came back negative but I could be wrong about that. My sense is it's probably worthwhile to screen for the various antibodies at this point, though the treatment ramifications of those results would be modest at best. Is gene screening also accessible?
This sounds like MODY, right, i.e. significantly impaired insulin production as a result of genetic mutations rather than an autoimmune attack on the beta cells? Obviously antibody (and gene?) testing would be the more definitive way to diagnose this, but everything else--initial presentation with only modest hyperglycemia, no DKA, twelve-year honeymoon so far that looks set to continue with only gradual decline in endogenous insulin production--seems to be consistent with MODY. Does this have any treatment ramifications, besides making it easier to sustain good BGs? I suppose it means if I were to have kids I'd be fairly likely to pass it on to them (it turns out I have several family members diagnosed with Type 2, I think that also fits the MODY profile of a gene defect that runs in the family). Is there any reason not to have antibody (and gene?) testing done? My impression is in the UK and perhaps other places that might limit my treatment options, though I'm not sure it's an issue in the US, at least with good health insurance.
Insights welcome, joining the forum recently has really been a wonderful opportunity to better understand this condition and find a community of fellow travelers.
