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Looking for other mody folks x

Hi. I’m being tested for Mody at the moment. I will join the “group” if I get a positive test back!
 
Have six with MODY2 in my family. There is a vibrant MODY community (1000+members) on Facebook if you do a search. Would love to see a subthread here as well.
 
Hi,

I am Mody 3, been diagnosed five years ago and managing it without meds. Always happy to share my experience.

Rgds !
 
Hi all, I'm MODY HNF4A (the rare type apparently) - diagnosed almost 10 years ago. My mum also has it (but only found out that it was MODY when I was diagnosed) and my brother carries the gene. My mum was told she was Type 1 and treated with insulin for 25 years. My brother's daughter was born with hyperinsulinism due to the gene. Lots going on with us! Nice to meet you all. :-)
 
aliceclaresmith said:
Hi all, I'm MODY HNF4A (the rare type apparently) - diagnosed almost 10 years ago. My mum also has it (but only found out that it was MODY when I was diagnosed) and my brother carries the gene. My mum was told she was Type 1 and treated with insulin for 25 years. My brother's daughter was born with hyperinsulinism due to the gene. Lots going on with us! Nice to meet you all. :-)
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Hi Alice,

Nice to meet you.

I haven't checked into this app in a while.

I'm Mody 3 as are my mum and 2 sisters.

I'm treated with insulin as they always thought I was type 1 and after years of using insulin I didn't want to change to tablets.

My mum and sisters treat using tablets.
 
Fawbs89 said:
Come say hi..
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Hi
I am a mody diabetic. Diagnosed as type 1 back in ‘68 when I was 9
Treated as type 1 most is my life until about 12 yrs ago
Fawbs89 said:
Come say hi..
Click to expand...
It would be interesting to find out how diabetics have found dealing with their diabetes after finding out they have mody. Sadly, I have found a lot more help is given to type 1. My care has greatly reduced after finding out I don’t have type 1
 
Hi, I’m from Germany. Over 30 years ago, I was diagnosed with Type 1 diabetes. I spent a year without insulin and have been taking insulin since then, but only very, very few units. Since my C-peptide level is still quite high and I have no antibodies, a genetic test for MODY was done. It turns out I have MODY Type 10 (INS), which seems to be a very rare form of MODY. Is anyone else here with Type 10?
 
Hi I was lucky I got a new diabetic nurse in 2022 and she sent me for a genetic test and it was confirmed I had MODY (think 12 ABCC8) not type 2 after all. I have been adjusting to being on insulin and have just been moved onto Mounjaro, on week 3 and my average has gone from 72 to 68 so making small progress. Only lost 2kg but not on it for weight as such. It sounds like it is so hard to get a correct diagnosis but I was lucky I had a nurse who had seen the high levels and suggested a test.
 
Hello, I am MODY 3. I take insulin but have been taking Mounjaro self funded for about 5 weeks. My sugar levels have been so good and I hardly take insulin. I havw an appointment with the diabetic clinic next month and I hope to get it on the NHS.
 
Hi
Diagnosed 28 years ago with gestational diabetes that didn’t go away, told I had to go on insulin as wasn’t safe to be at home with a toddler & premature baby, I refused
Told I was a weird type 2 until diagnosed
3 years ago as MODY 1 (Hnf4a)
Nobody else in family has ever had a diabetes diagnosis
Still in n 20mg gliclazide a day
 
mike05 said:
Hi,

I am Mody 3, been diagnosed five years ago and managing it without meds. Always happy to share my experience.

Rgds !
Click to expand...
Hey Mike, i think i am mody 3- but not quite at the hba1c threshold my gp needs to send me for testing, so i am trying to control with meds. I would love to understand your experience
 
Mdeegs said:
Hey Mike, i think i am mody 3- but not quite at the hba1c threshold my gp needs to send me for testing, so i am trying to control with meds. I would love to understand your experience
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What leads you to believe you are MODY 3? It’s usually hereditary caused by a gene mutation. Is there others in your family that have confirmed MODY diabetes?

Maturity-Onset Diabetes of the Young Type 3 (MODY 3): A Rare Presentation of Diabetes in Primary Care - PMC

Maturity-onset diabetes of the young (MODY) is a genetic form of diabetes with an autosomal dominant pattern of transmission characterized by dysfunction in pancreatic β-cells. MODY type 3 (MODY 3) is caused by heterozygous mutations in the ...
pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov
 
lovinglife said:
What leads you to believe you are MODY 3? It’s usually hereditary caused by a gene mutation. Is there others in your family that have confirmed MODY diabetes?

So, I have lots of atypical diabetes in my family: Lean, insulin dependent early on and labelled type 2's. My markers are atypical for type 2 and i was negative on antibodies. Very lean, highly active, mild high normal fasting and hba1c but high exagerated spikes from things like just eggs and salad with no dressing that take 3-4 hours to get back to normal. And i have a low/normal cpeptide. The key being despite a strict low carb diet and exercise, i have the hba1c creeping up - 0.5mmol in less than 2 years. The post prandial glucose excursion and family history is a pretty big red flag. The problem is i cant get tested until i reach the clinical markers for diabetes. So i am doing this on my own.
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