Hey guys! So I have been diabetic now for nearly three years. Since being diagnosed they have discovered that I actually suffer from a condition called MIDD (maternally inherited diabetes and deafness) this form of diabetes is a mitochondrial form meaning that I will eventually loose some of my hearing. As well as the diabetes side of it I also suffer from muscle pains and I awaiting a muscle biopsy. I was hoping I could find people my age and possibly who might live in the newcastle area to chat with or just people in general who suffer similarly
Hi Laura and welcome,
I've probably got the same thing - that is, I've got most of the symptoms but not the particular gene anomalies that they've tested for so far. However, they keep discovering new ones, and my consultant's pretty sure of the diagnosis.
In particular I suffer from muscle pains, and in my case (typically for MIDD and other mitochondrial forms of diabetes) this is caused by a co-enzyme Q10 deficiency. By taking Q10 and avoiding statins like the plague (because they block Q10 absorption) I keep the muscle pains at a background level and also have lots more energy than I used to have. Q10 isn't available on prescription, but it's not very expensive.
My understanding is that this kind of diabetes and all the other MIDD symptoms are progressive: thus my fasting bloods were a little high for years but only hit the diabetic range in my forties. I still have enough insulin production to control the db with a low-carb high-fat (LCHF) diet, though more and more foods now raise my blood sugar - for example, I used to be OK with carrots and parsnips but now I'm not. Metformin doesn't help, since it's an insulin production problem, not an insulin resistance one, and at some point I'll probably have to start using insulin again.
It isn't inevitable that you'll end up deaf, since not all symptoms become manifest in all cases. Having always had very good hearing, at 51 I've started to notice that other people mumble in a way they didn't in the past - which I suspect is actually a problem with my hearing rather than their diction! My maternal grandmother still has excellent hearing at 97, and her blood sugar only hit diabetic levels in her eighties. But she's had "arthritis" that didn't respond to any treatment or show up on the x-rays for decades, and I'm pretty sure it's actually mitochondrial diabetic muscle aches.
I'm not your age (judging from your photo) and not in your area, but I'd be happy to answer any questions that I can.
Kate
