Type 1 diabetic with mitochondrial disease

Welcome Laura

I don't have MIDD, but understand that there is a Professor in Newcastle who is an expert on this condition, you may have already been referred to him ? It's quite rare !

But a warm welcome to the forum, I know that you will find a huge amount of info here on the diabetes side alone that you will find of interest, also a great deal of support

Signy

Welcome. I hope you get all the answers and support you need.

Bumpety Bump !

( Because I'm pretty sure someone posted about this recently , I just can't remember who and where )

Signy

There is another forum member who posted about this condition, @kesun, but it was a few months back. Her post is here,

http://www.diabetes.co.uk/forum/threads/hello-advice-would-be-appreciated.59207/#post-558579





Edited to add another thread with some information and some other forum members who have this type of diabetes.

http://www.diabetes.co.uk/forum/threads/mitochondrial-disease-and-type1a.60967/#post-625243

Thank you Catherine, I knew that I had read it somewhere !

However, " recent" could be anytime in the last decade for me

Signy

Laura.waddell said:

Hey guys! So I have been diabetic now for nearly three years. Since being diagnosed they have discovered that I actually suffer from a condition called MIDD (maternally inherited diabetes and deafness) this form of diabetes is a mitochondrial form meaning that I will eventually loose some of my hearing. As well as the diabetes side of it I also suffer from muscle pains and I awaiting a muscle biopsy. I was hoping I could find people my age and possibly who might live in the newcastle area to chat with or just people in general who suffer similarly

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Hi Laura and welcome,

I've probably got the same thing - that is, I've got most of the symptoms but not the particular gene anomalies that they've tested for so far. However, they keep discovering new ones, and my consultant's pretty sure of the diagnosis.

In particular I suffer from muscle pains, and in my case (typically for MIDD and other mitochondrial forms of diabetes) this is caused by a co-enzyme Q10 deficiency. By taking Q10 and avoiding statins like the plague (because they block Q10 absorption) I keep the muscle pains at a background level and also have lots more energy than I used to have. Q10 isn't available on prescription, but it's not very expensive.

My understanding is that this kind of diabetes and all the other MIDD symptoms are progressive: thus my fasting bloods were a little high for years but only hit the diabetic range in my forties. I still have enough insulin production to control the db with a low-carb high-fat (LCHF) diet, though more and more foods now raise my blood sugar - for example, I used to be OK with carrots and parsnips but now I'm not. Metformin doesn't help, since it's an insulin production problem, not an insulin resistance one, and at some point I'll probably have to start using insulin again.

It isn't inevitable that you'll end up deaf, since not all symptoms become manifest in all cases. Having always had very good hearing, at 51 I've started to notice that other people mumble in a way they didn't in the past - which I suspect is actually a problem with my hearing rather than their diction! My maternal grandmother still has excellent hearing at 97, and her blood sugar only hit diabetic levels in her eighties. But she's had "arthritis" that didn't respond to any treatment or show up on the x-rays for decades, and I'm pretty sure it's actually mitochondrial diabetic muscle aches.

I'm not your age (judging from your photo) and not in your area, but I'd be happy to answer any questions that I can.

Kate

Hi everyone. This is my first post on here. I have been reading various things on the forum for a little while now which has all been really useful stuff. I'm so glad I found this thread as I've been wondering if there were any others on here with MIDD. I was actually diagnosed with a hearing impairment before my diabetes came about (which was devastating in itself when in my late 20's and needed hearing aids). I've really struggled with the diabetes diagnosis and then MIDD diagnosis on top of that (3 years ago) and I've always felt 'different' from other diabetics - although the advice and support from everyone has been amazing.

I'm actually a long way from Newcastle, I live near Cambridge, but anyway I just thought I'd say hi!

Warm welcomes !
Deafness alone is enough to make you feel different and isolated, and diabetes too is an isolating condition. But on here " We are all different " , so you will fit in really well

Signy

It certainly is! It has all taken rather a lot of adapting to & it is really good to know I'm not alone with the struggle. Thanks for the warm welcome - I'm sure I will fit in very well then

@Laura.waddell , how are you getting on ?

Signy

jen_fish said:

I'm actually a long way from Newcastle, I live near Cambridge, but anyway I just thought I'd say hi!

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Hi and welcome, jen-fish!
I'm a long way from either Cambridge or Newcastle, but the beauty of the internet is that distance hardly matters. Mitochondrial diabetes is a bore, but to be honest if I have the have db it's the kind I'd choose: no insulin resistance, and only a gradual loss of insulin production. I'm lucky not to have any hearing loss despite having not one but two syndromes where deafness is prevalent. It must be tough dealing with rare forms of both deafness and db. I hope you find plenty of help from this site.
Kate

Thanks kate
The internet is a very useful thing - a great way to feel connected and know we are not alone in all this! Diabetes of any type seems to be very complicated and complex. The mitochondrial issues seem to have added more things to deal with and think about. My cells must have given up quite rapidly as I was started on insulin straightaway and I've been told I will always be on insulin. My hearing deteriorated quite rapidly too and I'm just hoping it will settle down to a point. At the moment it feels like a long journey of acceptance and managing as best I can.

How have you all managed emotionally?

Laura.waddell,I have the very same thing as yourself.i have had these symptoms for 12 years

I believe I have mitochondrial diabetes. I have the dna alteration which causes MIDD and MELAS, lost my hearing and have to wear two hearing aids about 8 years ago I was diagnosed with diabetes in May and put straight on insulin I also suffer from chronic migraines and muscle pain. I am due to see the endocrinologist on the 16th

for those with mitochondrial diabetes, MIDD MELAS standards of care attached.
if you are having stroke like episodes: Citrulline/Arginine +TAURINE works well with me

Laura.waddell said:

Hey guys! So I have been diabetic now for nearly three years. Since being diagnosed they have discovered that I actually suffer from a condition called MIDD (maternally inherited diabetes and deafness) this form of diabetes is a mitochondrial form meaning that I will eventually loose some of my hearing. As well as the diabetes side of it I also suffer from muscle pains and I awaiting a muscle biopsy. I was hoping I could find people my age and possibly who might live in the newcastle area to chat with or just people in general who suffer similarly

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Hello! Im being tested for midd now, diabetes since 13 now 18 years ago, and have hearing aids, high pitched freqeuncy loss. Had them now 2 months but hearing got worse over 6 ish years.
My diabetic consiltant is uselss told me its too rare and its not that, asked him to just test abd he said no, so i got in touch with a uni who did some research and they think its very important i get tested so thankful to them!
My biggst concern is i have2 boys and that it passes onto them but in what way?
Noone wants their children to be diabetic and the other symptoms please get in touch if you fancy having a chat, im in cornwall but id really like to meet someone with this condition so that im not the only “different” t1
Xx amy xx

amyjamzy said:

Hello! Im being tested for midd now, diabetes since 13 now 18 years ago, and have hearing aids, high pitched freqeuncy loss. Had them now 2 months but hearing got worse over 6 ish years.
My diabetic consiltant is uselss told me its too rare and its not that, asked him to just test abd he said no, so i got in touch with a uni who did some research and they think its very important i get tested so thankful to them!
My biggst concern is i have2 boys and that it passes onto them but in what way?
Noone wants their children to be diabetic and the other symptoms please get in touch if you fancy having a chat, im in cornwall but id really like to meet someone with this condition so that im not the only “different” t1
Xx amy xx

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P.s amzyjamzy@hotmail.com

bev@1974 said:

I believe I have mitochondrial diabetes. I have the dna alteration which causes MIDD and MELAS, lost my hearing and have to wear two hearing aids about 8 years ago I was diagnosed with diabetes in May and put straight on insulin I also suffer from chronic migraines and muscle pain. I am due to see the endocrinologist on the 16th

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Hope u dont mind me asking! Ive had awful migraines too can it be a symptom of midd? Mitochondrial gene etc ?
Thanku!!

I also suffer from the same thing you have,I have mitochondrial disease(inherited through mother)my hearing,muscles are also affected and I have mitochondrial type 1 diabetes,basically all the muscles in my body are affected.i attended the genetics hospital in Newcastle .I have to travel from Scotland

Would supplements like NMN help delay progression or help with symptoms ?