MODY

[LisaEccles]

hi all, was diagnosed with type2 about 8 years ago now. I’ve never been your “typical” type 2. Just been tested for MODY and it’s positive, not sure which one as I’ve yet to speak to my consultant. My sugars are rising and I’m on a low carb diet and take a form of linagliptin. I don’t understand the condition and suppose I’m after some form of understanding and help?!
Thanks

 

[CathyB]

Hi, I don’t know much about this but I’m sure someone will 🙂

 

[TheClockworkDodo]

Hello Lisa, and welcome. MODY is very rare, but I know @Stitch147 has it, so she might be able to give you more information and advice.

 

[KARNAK]

Hello Lisa I do not know anything about MODY other than its normally considered a genetic form of Diabetes. Maturity Onset of Diabetes of the Young (MODY). Welcome to the forum 🙂.

 

[Stitch147]

Hi, I am a MODY (or moody as my other half calls me). I don't know huge amounts only what I've read on line. I was diagnosed as type 2 just over 3 years ago. I had no symptoms and a long line of diabetes on my father's side of the family. My hba1c was 127 on diagnosis. I was immediately put on the highest dose of Metformin but this had no effect on me. My dr the put me on gliclizide and this started making a difference. I still wake with higher than normal levels though.

 

[Stitch147]

https://www.diabetesgenes.org/what-is-mody/
This website is very helpful.

 

[TinyFrog1]

I'm MODY and very few people - doctors included - know very much about it at all. I was diagnosed age 12 and was assumed to be type 1. After injecting insulin for 8 years, had a radical lifestyle change (went vegan got into fitness) so for a few years was diet controlled. Am now 25 and my hba1c has gradually risen and they are going to try me on glyclazide. It is very frustrating to have such a misunderstood type of diabetes and i understand how you feel!

 

[LisaEccles]

Hi, I am a MODY (or moody as my other half calls me). I don't know huge amounts only what I've read on line. I was diagnosed as type 2 just over 3 years ago. I had no symptoms and a long line of diabetes on my father's side of the family. My hba1c was 127 on diagnosis. I was immediately put on the highest dose of Metformin but this had no effect on me. My dr the put me on gliclizide and this started making a difference. I still wake with higher than normal levels though.

Hi, Apologies didn’t see the replies. I know what you mean about the moody

Well I had exerted all the tablets and diet, hence now I’m on insulin. Struggling to get to grips with it as even though I eat healthy and low carb I’m still high! Really confused and so are doctors will keep on plodding and see what happens. Thanks for your reply

 

[LisaEccles]

Well it turns out my MODY is so rare that I am the only person in the UK tonhave it and the 4th person in the world just bloody typical ‍♀️ Well shall continue what I’m doing and hope for the best!! Thanks everyone for your help!

 

[LisaEccles]

I'm MODY and very few people - doctors included - know very much about it at all. I was diagnosed age 12 and was assumed to be type 1. After injecting insulin for 8 years, had a radical lifestyle change (went vegan got into fitness) so for a few years was diet controlled. Am now 25 and my hba1c has gradually risen and they are going to try me on glyclazide. It is very frustrating to have such a misunderstood type of diabetes and i understand how you feel!

Aw no sounds like your going through it aswell.
Hope the glyclazide works for you. Hopefully the insulin starts to level me out been it 3months now. Good Luck!!

 

[samilou85]

Well it turns out my MODY is so rare that I am the only person in the UK tonhave it and the 4th person in the world just bloody typical ‍♀️ Well shall continue what I’m doing and hope for the best!! Thanks everyone for your help!

Hey! Iv recently been diagnosed HNF1A, what are you? So so sucks to be such a rare subtype, iv lived 16 yrs as a T1D and know it inside out, to just have been informed I was diagnosed incorrectly! Finding it tough xx