maternally inherited diabetes and deafness

No I can't help you but in case no-one else answers can I just say welcome to the forum.

Bumping this for you. I also found this thread:

http://www.diabetes.co.uk/forum/threads/genetic-diabetes-midd.103016/#post-1182282

.

Hi xkerrybabessx I have been Type 1 diabetic for almost 7 years and I was told 2 weeks ago that I have MIDD... Like you I am finding it all hard to take in and there is hardly any information out therethat I can find. I have a almost 2 year old daughter and was thinking about having another baby but now I don't know if I should because of this new diagnosis.

NicoleBates said:

Hi xkerrybabessx I have been Type 1 diabetic for almost 7 years and I was told 2 weeks ago that I have MIDD... Like you I am finding it all hard to take in and there is hardly any information out therethat I can find. I have a almost 2 year old daughter and was thinking about having another baby but now I don't know if I should because of this new diagnosis.

Click to expand...

This page has a MIDD information sheet you can download:- http://www.diabetesgenes.org/content/maternally-inherited-diabetes-and-deafness-midd

There is some more information here:- https://www.diapedia.org/other-types-of-diabetes-mellitus/41040851356/mitochondrial-diabetes

Hi,

I have just recently been diagnosed with MIDD myself, after my mother who was diagnosed as type 2 for over 30 yrs has just found out she is MIDD due to my cousin also being recently diagnosed with MIDD.

My cousin has been referred to Great Ormond St where they have some really great specialists. I attended a seminar with her recently around Mitochondrial Disease, which causes MIDD. Still very new to it all myself as my Dr’s are unsure what to do for my diagnosis and are treating me as T2, pending a consultation with a specialist consultant.

The specialists at Great Ormond have put together some good bits of info on the NHS website under Mitochondrial Disease, they have a professional section which covers MIDD under its ‘care guidelines’.

Hope that helps somewhat but everything is quite vague at the moment as very rare and not well know about.

Just waiting for the results of testing for MIDD - Mum and all her siblings had/have diabetes and some level of deafness. I've read everything I can lay my hands on about this (I have access to a University library). It is a very new area but there are recognised approaches to treatment. The more of us they identify the better it will be to get more people aware of this.

Sorry, I can't find the link, but I recall a video of a retired ear doctor who discovered (and put himself out of work due to it) that a lot carb diet often improves the deafness. (He saw a lot of cases of deafness he linked to MIDD in people who had not yet been diagnosed as having diabetes.)

My mother was treated for T2 for many years and passed away in 1995. I have since been diagnosed with T2 but have never seen a specialist, only my GP and DN. How would I go about getting tested to find out if my diabetes is maternally inherited? My biggest concern is for my daughter as, if she's going to develop this, I'd like her to learn how to manage it before it becomes a bigger problem than it needs to be!
I'm now 57 and my daughter is 21.
ETA: As far as I am aware there is no accompanying hearing loss so this may be a red herring for me.

I know is an older thread, but just to say this is very interesting.

My mum was an "older mum" for then, diagnosed type 1 in early adulthood and went deaf as an adult, completely deaf (various operations happened) by the time she had me at age 44. All medical opinion at the time warned her against being ancient (for then), deaf, diabetic and having a child.

I am almost her age now. I am now profoundly deaf (early adulthood onset gradually getting worse), had severe gestational diabetes, was diagnosed prediabetic when I came back to UK from US 3 years ago (15 years in the US and had no follow up after gestational diabetes...!) and this year HBAC1 skyrocketed. It's been assumed I'm type 2, but dr has ordered some extra blood tests in Feb, which I'd assumed were re: type 2/type1 but he did mention the words "gene" in there, so now I'm wondering if that's what he's ordered.

Hi everyone
Did anyone s deafness get worse with Metformin or Saxaglyptin?
Thanks
Joss