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Discussion in 'Type 1.5/LADA Diabetes' started by Sirzy, Jan 11, 2013.
So glad to hear that you're getting good treatment and have specialist facilities. MIDD has affected at least 4 generations of women in my family, but only recently diagnosed because of complex issues my daughter has had to overcome. My son is waiting for his results currently. Take care
I haven’t been to this forum in a long time, but it seems like there are a lot more people with MIDD or mitochondrial diabetes here than there used to be. Was there any conclusion on the possibility of a MIDD/MELAS or just a mitochondrial diabetes section in the forum?
New to this forum (well any forums to be honest!). I had gestational diabetes with both my kids (now 28 & 26) and was diagnosed with type 2 diabetes at 34, managed on diet & metformin for 19 years. Now just started on long acting insulin (Abasaglar) and awaiting results of genetic testing for MIDD. Mum and all 3 of her siblings had/have diabetes and a certain level of hearing loss.
I was lucky to find a consultant in County Durham who was interested in this area and had already come across another patient with the condition, my GP had never heard of it. I've done a lot of reading and research over the last few months (scientific papers etc, which I'm happy to share with anyone, but I don't pretend to understand all of the science behind some of the studies!). If anyone else is just starting down this path then the University of Exeter is good starting point: http://www.diabetesgenes.org/content/maternally-inherited-diabetes-and-deafness-midd. This is the lab that my blood was sent to for testing.
A forum for mitochondrial versions of diabetes would be great as I suspect that this is a bigger area than it is at the moment.
Well that's my first ever forum post, but I'll be here again
MIDD scares me a fair bit, and I hope I don't have it. I'm 40 years old, diagnosed with diabetes about a year ago, but in hindsight have had symptoms for two years before that. I'm on mdi, which works fine for me, but neither I nor my dn are sure if I'm type1 (lada) or type2. As I'm already treated like a type1, which works quite well for me at the moment, I don't see the advantage in tests to determine my type. Unless it's MIDD maybe. My mother died from an accident at age 44. She had had severe and progressive hearing loss for about 8 years before she died. Shortly before that accident we did a fingerprick test for fun with the meter of my friend , and it read highish. She planned to follow up on that, but she died shortly after. Her sister, now 69 years old has been diagnosed diabetic for some years now, and has hearing problems. Not unusual for an overweight old woman, but still. Their other sister has no known problems with either blood sugar or hearing. Their mother has lived to 89 years with hearing loss for years, don't remember how long, but no known diabetes. There is no other family on mothers side, nor do I have siblings. Am I daft to worry (a little) about MIDD or is it a possibility?
Is hearing affected in all MIDD cases, in some degree and does no other the of types of diabetes get affected by hearing loss?
No, of course you’re not daft to worry about this. As well as progressive hearing loss, most people with MIDD tend to be short in stature and slim to thin. Everybody on my mum’s side of the family had/has MIDD and we were/are all deaf to some extent, short and thin. So if you think you fit this criteria, it might be worth looking into a bit more. MIDD also start to show symptoms in the mid-thirties.
I think it is usually effected in MIDD, but to different degrees. My sister wears two hearing aids, but I’ve only lost some high range hearing in my left ear. Then again, she doesn’t have diabetes (yet?) and she’s six years older than me.
Thanks! Fat and tallish here, so I leave the worrying unless I get hearing problems.
Thanks for posting this/bringing this post back up. I’d never heard of MIDD but symptoms seem strikingly similar.
My mum and her sister were both diagnosed as going deaf and with type 1 diabetes in their early 30s. I started going deaf in my 20s and am now severely deaf at age 40. I had GD at age 30 but there was never any follow up (US health care system). Moved back to the UK three years ago and was promptly diagnosed as prediabetic when I signed up and had blood taken at my GP. Was recently diagnosed as type 2 as HBAC1 went haywire this year but GP is considering it might be type 1. He never mentioned MIDD, just said something about family history and then said at my next test in February he’d order additional tests. He did say the name of it but I promptly forgot.
My mum and her sister passed away decades ago so I can’t ask them about family history. My mum had a diabetic related stroke, so diabetes looms large for me - she was very, very thin and frail for as long as I can remember. She was Chinese-Guyanese so all her family are short and slim by default, although as I’m half English I’ve always been much stockier than them and blamed genetics for giving me her height and my dad’s build. I guess I could still count as thin, though.
As for info, there is a FutureLearn free course on genetically based diabetes. The course was fascinating and packed with a lot of info links to which normally you might not have acesss
Go to the Genomic Medicine section of FutureLearn.
Hoping MIDD becomes a drop down menu Diabetes type on the Forum. Since we are all becoming more interested in hte genetic compoenets of various aspects of our metabolic issues, even if we are not or not yet diagnosed with MIDD, it is important to read about it and think about it.