Hi!

[Snoozy Lou]

Hi Everyone! I am Lou. I got diagnosed as diabetic at the beginning of April. There is a mitochondrial disease in my family which is linked to diabetes. My GP was going to put me on metformin but due to the mitochondrial link didn't and instead referred me to the hospital. So I just got advised to not eat cake and sent to the diabetes UK website . Hospital appointment is at the end of June. My Hbac1 was 50.8 so not that high.

All of my family have diabetes so it shouldn't have been a shock, but it was! Didn't really think it would happen to me! I have been reading the posts on this forum, which has been a massive help! Thanks everyone! I am feeling much more positive now, eating well and losing weight!

Has anyone else got diabetes linked to mitochondrial disease? (MELAS or MIDD specifically?)

 

[Inka]

Welcome @Snoozy Lou 🙂

I have Type 1 but I know there are a few people here with mitochondrial diabetes. You can also use the Search feature top right if you haven’t already.

 

[everydayupsanddowns]

Welcome to the forum @Snoozy Lou

Sorry to hear about your diagnosis and the shock it was for you. Will you get good support from your family because they have all been there before you?

Im afraid I don’t know much about mitochondrial diabetes. Is the treatment of it similar to T2?

 

[Snoozy Lou]

I am not sure yet about treatment for myself, at the moment its diet and exercise. Got diagnosed over the phone and waiting for hospital appt!
I just remember that the genetic counsellor that I saw a long time ago told me never to take metformin due to lactic acidosis if I ever became diabetic. I remember my mum was on insulin growing up, and my nan. My sister managed to control with diet and exercise for a while, but then was put straight on insulin 8 years ago. So I suspect this is where I may be heading. Medication is always changing, so maybe there are new options now?

 

[Inka]

I expect you e already seen this site but there’s some information here:

https://www.diabetesgenes.org/what-is-mody/maternally-inherited-diabetes-deafness-midd/

There are other types on the site too.

 

[Yellowgenie]

Hi Everyone! I am Lou. I got diagnosed as diabetic at the beginning of April. There is a mitochondrial disease in my family which is linked to diabetes. My GP was going to put me on metformin but due to the mitochondrial link didn't and instead referred me to the hospital. So I just got advised to not eat cake and sent to the diabetes UK website . Hospital appointment is at the end of June. My Hbac1 was 50.8 so not that high.

All of my family have diabetes so it shouldn't have been a shock, but it was! Didn't really think it would happen to me! I have been reading the posts on this forum, which has been a massive help! Thanks everyone! I am feeling much more positive now, eating well and losing weight!

Has anyone else got diabetes linked to mitochondrial disease? (MELAS or MIDD specifically?)

Hi there! I am new to the forum, I have MIDD/MELAS, diagnosed many years ago when they just found the gene that caused it, at the time I was asymptomatic but things have moved on. My whole family are diabetic, deaf and various other related problems. I developed diabetes when I was around 24, started on tablets but it was clear they weren't working so moved fairly quickly onto insulin, classed as T2 and to date it has not been changed to T1. My brother however developed diabetes in his late 30s/early 40s and they gave him tablets, kept upping the dosage and he ended up in hosp with dka, so he is now T1. My mum became diabetic in her 60s! They tried to put her on metformin, she was having none of it, GPs and DSNs tend to be very ignorant of anything that is not TYPE1 or 2. 2 first cousins on insulin but I am not sure how they are classed. Believe me mitochondrial diabetes is no joke!