Hi today I've just found out my results for the genetic testing, I have maternally inherited diabetes and deafness (MIDD) I would like to know how you or family members dealt with this emotionally and physically ? And have you grown to have problems later in life?
Hi Hayley
@hayleyowen90 , and welcome.
I have something very similar to MIDD - that is, all the symptoms are the same but it's a different gene mutation from the usual one. Congratulations on having one of the mildest form of diabetes available!
About family: well, I don't happen to be deaf, but there's a lot of it in my family. The main difference it's made to me is that I had my children's hearing tested at birth and again at one year and two years old. I'm glad that I can also warn them what to look out for when they're older: looking back, my blood sugar was probably a bit high from my late early twenties onward, but because it wasn't dangerously high the problem was never picked up.
We've been lucky in my family in that my grandmother's diabetes didn't become symptomatic until she was about 90 and my mother is symptom-free in her seventies. Mine was first detected in my late thirties. To be honest, it doesn't bother me much because it's manageable when it does develop: imagine having a PS1 ( early Alzheimer's, BRCA1 (breast cancer) gene or VHL tumour suppressor (von Hippel Lindau syndrome) gene mutation. Compared with that, knowing that in due course I'm going to have to inject insulin again is not a problem.
So when I was first diagnosed I was put on a low dose of insulin together with a strict carbohydrate exchange diet, which worked fine. Then owing to a misunderstanding I found myself without insulin or any immediate possibility of getting any, looked around in panic for any literature to help me and found Dr Bernstein. I started following his diet and found that I can achieve normal blood sugar without insulin. This was a revelation.
Of course, I also know that our condition is progressive. In my case, at diagnosis it was only my basal insulin production (the insulin that drips out to mop up what the phase 1 and phase 2 leave behind) that was badly impaired. Since then I've started to see impairment in the others too and to find that lower-carb foods that used not to affect me (carrots and parsnips for example) not spike my blood sugar. So probably in the next few years I'll have to start insulin again - but I've had over ten years of control on diet alone, and even when my insulin production gets too low to cope I'll still stick to low carb and aim for normal blood sugar. If Dr B (a type 1) can do it so can I!
The other thing that's made a huge difference to me is co-enzyme Q10, which I started when my consultant told me that mitochondrial diabetes is associated with Q10 deficiency. It made an enormous difference to me: suddenly I had as much energy as everyone else. Also, if you have this deficiency, you absolutely must not take statins, as they interfere with Q10 production and can make you really ill.
I hope this is helpful. Please feel free to ask me any questions you may have, and I'll do my best to answer. I'm mostly around at weekends but not in the week, so I may take a little while to reply.
Kate
