- Messages
- 284
- Type of diabetes
- Type 2
- Treatment type
- Diet only
Hi all,
I haven't posted in this forum for a long while, but I have finally - after years of struggling with trying to get tested - been diagnosed with MIDD (Maternally Inherited Diabetes and Deafness - I think they put diabetes first in the name... so I got the title wrong!)). So if you are experiencing diabetes and deafness and neither have a very obvious reason (I was diagnosed type 2 at age 35, am of normal weight; no one ever gave a reason for me starting to go deaf in my 20s, except my mother was also deaf), do consider it and bring it up with a doctor. I am 44 now, so have often been told (I know, wrongly) that I'm so young/thin/not the normal presentation for type 2 or to be (now) profoundly deaf, but no one seriously considered a reason.
My GP spent 6 years ignoring the idea every time I mentioned it, and almost seemed okay that I had self-diagnosed with it. And my diabetic nurse said she'd ask someone at the practice, but never did. I told her I couldn't be on metformin because it's contraindicated in MIDD, if I had it, but she's been 'happy' with an HBA1C that's hovered between 47 and 55, on no meds, even on a very low carb diet. It was eventually my audiologist who referred me to a geneticist, and that was after the audiologist had to Google what I was talking about.
MIDD is one of a range of mitochondrial diseases with a particular gene 'misprinted' which they diagnose with a DNA test, and apart from the obvious, shares other mito symptoms:
short stature
possible kidney problems
possible heart problems
gastrointestinal problems
muscle weakness
fatigue.
I've been referred to almost every department in the hospital to discuss these, and I've also been referred to the specialist genetics centre in Oxford, because we don't have one in Wales. I'm not sure what they are supposed to do... I've obviously concentrated entirely on diabetes and deafness, but for me personally the muscle weakness and fatigue have been a big thing since childhood. I just assumed I was unfit, but I've spent decades going to exercise classes and weight-training classes and feeling like a failure because I've always been the worst person there, who also randomly falls over.
I haven't posted in this forum for a long while, but I have finally - after years of struggling with trying to get tested - been diagnosed with MIDD (Maternally Inherited Diabetes and Deafness - I think they put diabetes first in the name... so I got the title wrong!)). So if you are experiencing diabetes and deafness and neither have a very obvious reason (I was diagnosed type 2 at age 35, am of normal weight; no one ever gave a reason for me starting to go deaf in my 20s, except my mother was also deaf), do consider it and bring it up with a doctor. I am 44 now, so have often been told (I know, wrongly) that I'm so young/thin/not the normal presentation for type 2 or to be (now) profoundly deaf, but no one seriously considered a reason.
My GP spent 6 years ignoring the idea every time I mentioned it, and almost seemed okay that I had self-diagnosed with it. And my diabetic nurse said she'd ask someone at the practice, but never did. I told her I couldn't be on metformin because it's contraindicated in MIDD, if I had it, but she's been 'happy' with an HBA1C that's hovered between 47 and 55, on no meds, even on a very low carb diet. It was eventually my audiologist who referred me to a geneticist, and that was after the audiologist had to Google what I was talking about.
MIDD is one of a range of mitochondrial diseases with a particular gene 'misprinted' which they diagnose with a DNA test, and apart from the obvious, shares other mito symptoms:
short stature
possible kidney problems
possible heart problems
gastrointestinal problems
muscle weakness
fatigue.
I've been referred to almost every department in the hospital to discuss these, and I've also been referred to the specialist genetics centre in Oxford, because we don't have one in Wales. I'm not sure what they are supposed to do... I've obviously concentrated entirely on diabetes and deafness, but for me personally the muscle weakness and fatigue have been a big thing since childhood. I just assumed I was unfit, but I've spent decades going to exercise classes and weight-training classes and feeling like a failure because I've always been the worst person there, who also randomly falls over.
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