New Topic Area - MIDD?

[Dodgygenes]

MIDD has been found in all females of the family. Melas in everyone, also my brothers. Started with medication like Type 2 but changed into insulin. Most of the information i get from Holland. There is at least one hospital Radboud in Nijmegen that is specialised Mythochondrial diseases. A thread just for MIDD/MELAS would help.

 

[Dodgygenes]

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

 

[Sirzy]

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?

 

[T_Lady]

Hi there

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

 

[Antje77]

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?

 

[ickihun]

Is hearing affected in all MIDD cases, in some degree and does no other the of types of diabetes get affected by hearing loss?

 

[Sirzy]

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?

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.

 

[Sirzy]

Is hearing affected in all MIDD cases, in some degree and does no other the of types of diabetes get affected by hearing loss?

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.

 

[Antje77]

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.

Thanks! Fat and tallish here, so I leave the worrying unless I get hearing problems.

 

[Smallbrit]

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.

 

[Ceesharp]

I last posted in this forum some years ago, when I had a provisional diagnosis of MIDD, caused by the 4234A>G mutation. Shortly after that post my diagnosis was confirmed. I now wear hearing aids in both ears, and still struggle to control my diabetes. I use basal/bolus insulin and this last year I have been using Dulaglutide (Trulicity) injections, with some success. The other symptoms of the syndrome are now more advanced and my balance and walking are severely affected, along with fatigue. Three of my four children have a confirmed diagnosis; two of them have diabetes, deafness, and other symptoms (my eldest uses a wheelchair), and one had gestational diabetes.
I have five siblings. Four of us have diabetes and other symptoms in varying degrees. We are all deaf, as are my four surviving aunts. I've lost count of how many of us have diabetes - it's a lot.
I am really fed up with having to explain that my diabetes is NOT self-induced Type 2 (I am most definitely not small and thin, my Indian ancestry works against that, as do the very tall genes in my Father's family.) I would welcome a dedicated forum about MIDD, especially an no-one seems to have heard of it. Three of us have first-hand experience of our doctors (not the Mitochondrial specialists) googling the syndrome, sometimes during the appointment!

 

[sunshine999]

Hi, I have the MIDD MELAS gene, deaf and diabetes, with MELAS comes the brain strokes (more severe phenotype). I have been deaf diabetic since 39, had gestational at 29, that is what makes them think its just a type 2. I wear hearing aids. take a mito cocktail every day. sure start a new topic, most doctors are not aware and patients experience a long time to correct diagnosis. I'm sorry people think you are a self induced type 2 and we can't take metformin. set the record straight. Its rare but we are hardly invisible.

 

[sunshine999]

From what I understand, just like with LADAs people with MIDD suffer from misdiagnoses a lot (it's one of the main things I've run across during my researching). I think that if we wait for enough people with confirmed MIDD to speak up, we're going to miss out on a lot of valuable information. If MIDDs have a place to discuss their symptoms and stories, we're likely going to see more people with wrong diagnoses speak up and get tested properly. Right now, MIDDs aren't likely to post because there are no places for them. This means the forum won't rank well on Google for unique symptoms and experiences, as well as the MIDD keyword, so we're not going to be seeing more MIDDs join or talk about it either.

Is there any way we can accommodate MIDDs despite there not being as many individuals with this type at present? Even if it's just a stickied topic focused on MIDD in a specific forum?

Edit: Maybe we can start by including MIDD in the dropdown for diabetes type!

Yes I MIDD MELAS menu option would be great. This is a rare form of diabetes but with more genetic testing we are finally getting accurate diagnosis. It is one of the most common mitochondrial diseases, which are rare diseases, but diabetes is often a symptom.

 

[Lmwsti]

Great all these new comments. I almost quit the forum because there was no Midd option.
Yes I a have an hearing aid as do my 3 sisters and 3 brothers. A brother and sister with a pace maker. My weight is now 46,5 kilo. I am trying to get it back to 50 kilo.
Muscle ache is wat i get after 1 day working in the garden. Walking on a tretmill during wintertime helps me as a regular exercise. My genetic testing was done in France. My brothers and sisters in the Netherlands. What is aMito coctail Sunshine?

 

[sunshine999]

Mito cocktail:
Co-q-10 preferably in liquid ubiquinol form.
B complex 100.
Riboflavin.
Vitamin E.
L- citrulline
Taurine.
Alpha lipoic acid.
Creatine monohydrate.

Maximum nutrition from raw foods, or make a smoothie.
Whey protein shake put on muscle. Lift weights.
Ketogenic diet if brain strokes. But good fats: avocado, olive oil. Also MCT oil (medium chain triglyceride).
I get all vitamins on amazon.
No help yet for lost hearing just hearing aids.

 

[Lmwsti]

Thanks Sunshine999. One of my sisters is having severe muscle pain, a frozen shoulder. And just recently got shingles. Of cours her testing bloodsugar values are terrible. She used to bicyle but now even has difficulty walking. Are you on a low carb diet or not?

 

[Smallbrit]

Just reading this again - I mentioned it to my GP at my last blood test, who said he'd look into it and contact me if he thought necessary. He hasn't contacted me. I see him again in July.

Question for those who have it: Is there any difference in treatment if you are diagnosed? Should I be pushing for a genetic test?

I'm on diet/exercise alone, so the metformin question has not come up, and I lowered my HBA1C to 48 at last reading from 76 with a low carb diet.

 

[sunshine999]

Yes low carb diet. Lots of protein, fresh veg, healthy fats. If the shoulder is still froze, just use ice packs. Once it starts to thaw, use heat and therapy movement and break up scar tissue. Ibuprofen to reduce inflammation. It can take up to a year, keep moving it. Mostly swing from a bar at the gym or a playground. Leg muscle pain I just try my best to push thru it. Music helps.

As to big difference in treatment after genetic tests, I would say yes. The biggest risk is anesthesia, as you might decompensate quickly, like during childbirth, or at dentist. Also there’s long list of rx that shouldn’t ever be given to Mito patient, including antibiotics. MIDD can progress to melas and you might wake up in emergency room. Then there’s few specialists who are aware of this rare stuff, so I carry a medical ID and put into my phone. No cure so I would do my best to limit disease progressing by getting on Mito cocktail sooner than later. Mito science has not evolved. My favorite sibling keeled over one day with little warning and a wrong diagnosis.

 

[Lmwsti]

Thanks for the advice Sunshine999. I will let my sister know.
I just notice that i am loosing weight agan. Now 45,9 kilo.
Any idea what to do about that. I do eat carbs..
Novorapid 3,5 mornings
Novorapid 4,5 diner.
Levemir 4 night.
Hba1c 5,9 1 april

 

[sunshine999]

Increase protein if you can. Eggs, drink Whey protein drinks. Add creatine monohydrate. Lift weights to build muscle. Protein in eggs chicken salmon shrimp. Blessings