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Maternally Inherited Deafness and Diabetes - MIDD - finally diagnosed

Discussion in 'Other Health Conditions and Diabetes' started by Smallbrit, May 23, 2021.

  1. Smallbrit

    Smallbrit Type 2 · Well-Known Member

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    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

    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.
    • Hug Hug x 10
    • Informative Informative x 3
    #1 Smallbrit, May 23, 2021 at 6:18 PM
    Last edited: May 23, 2021
  2. Dr Snoddy

    Dr Snoddy Type 2 · Well-Known Member

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    Thank you for sharing this.
    • Agree Agree x 2
  3. Freema

    Freema Type 2 · Expert

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    so much to truggle with at the same time and finally some doctors take you seriously, but it seems to me a problem that no one doctor is the head of collecting the whole spectrum of diseases and conditions you may have to cope with the rest of your life.. being genetic there is no cure really yet.. I wan't to wish you all the best...good that you kept telling all these ignoring doctors and health workers... keep on doing that..
    • Agree Agree x 2
  4. EllieM

    EllieM Type 1 · Moderator
    Staff Member

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    Thank you so much for posting this. Your thread may well help someone else who is struggling with your symptoms.
    • Agree Agree x 3
  5. skellysheroes

    skellysheroes Prediabetes · Member

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    Thanks so much for posting this. Glad you have been diagnosed finally, hopefully you will get more support going forward. My situation is pretty much mirrors yours and I have family members already diagnosed. I have been waiting for testing for over a year now and it is very frustrating.Have they now advised to take anything for the diabetes??. My HBA1C is similiar to yours and I've also been advised to avoid metformin /statins.Good luck when you go to Oxford. I am in Manchester and will be going to Salford Royal for testing eventually so only down the road. Keep us posted please smallbrit x
  6. johnbear2

    johnbear2 Type 1 · Well-Known Member

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    Midd sounds like the rare genetic condition (melas syndrome) (M3243A) I was diagnosed a few years back
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