Any MODY's out there?!

[AlexB]

Are there any other MODY's out there? If there are, are there enough to have a MODY forum? I always seem to be the odd one out! I realise it's not so common so may not be worth it...

 

[desidiabulum]

Hi @AlexB. You are not alone. We are a small and select bunch, so maybe not enough of us for a separate section, but that just means we're special. It's nice to be in touch with someone else who is caught out by the 'Are you T1 or T2? or LADA?' question. Have they sorted out which gene is involved? What medication are you on?

 

[lewislviola]

Hey guys, I am curious about how you found out you have MODY, and what type? I suspect I have MODY 2.

 

[AlexB]

aha! another MODY! Yes i have HNF4-alpha (diagnosed with that after genetic test about 3 or 4 years ago now I think). Was misdiagnosed initially 23 years ago, firstly with type 1 (I was 12yrs old - told it wasn't genetic then!!) I have a long list of family (mum, 2 aunties, 2 uncles - all siblings, 2 cousins, my brother and now my niece all with the same) I am seen in Tunbridge Wells, Kent by Dr Dennis Barnes (who is brilliant) who has taken a real interest in it. I’ve only being seeing him for a few years. Finally he got me on the right medication - as he says i just need to go and 'lick my medication' as I am so sensitive to everything.
For years I didn't treat it at all as i was sick of hypo-ing everywhere on insulin, and metformin had no effect which baffled many other doctors. I could just sort of get away with it even if I spent the whole time exhausted, thirsty and scaring all over from the smallest nicks getting infected. I now know Gliclazide sends me into a spin of multiple hypos but 1/4mg of Repaglinide or 1/2mg at a push does work out ok (although still have to be careful of drops!) am just about to go on an insulin pump to get better control as my eyesight has really suffered and Moorefields hospital are on their last options with me on what they can do to keep it. After years of rebelling against it as it was always ‘tomorrows problem’ for me, tomorrow has suddenly become today!
On the are you T1 or T2 question(which drives me BONKERS) I went to A&E a couple of years ago (non Diabetic related reason) and the young chap there asked me that and when i said 'no I’m MODY' he said he had never heard of it and when i explained what it was said 'sounds like a contradiction in terms' and just sort of dismissed me as an idiot and wrote on the sheet 'Type 2' as i took tablets...nice!
Ho hum! So nice to hear from another MODY I’m not related to!! :0)

 

[AlexB]

Hey guys, I am curious about how you found out you have MODY, and what type? I suspect I have MODY 2.

History of it in my mums side , although only her generation and down.I am incredibly sensative to insulin and though i had years of not treating it at all i never went into hospital or get very sick with high blood sugar although they always ran from about 18 - 30. I have a very on the ball consultant. From what i have read and heard i think the the feeling is that MODY is a lot more common than people realise

 

[EwokBishop]

Yay! MODY's unite! Can I ask dors everyone else attract curious medical students like the plague?

Alex it's really interesting to tead your post, I very much the same with med sensitivity, I was prescribed a gliptin (cannot for the life of me remember which one) and told it would take 48 hoursto show any effect, 4 hours later I woke up surrounded by paramedics because I'd had a majorly rapid hypo! Thank goodness my husband came home when he did!

I find Tolbutamide works best for me as you take it with meals as you would with multi dose insulin so I can adjust if I need to. It's an old medication and I'm told it's rarely prescribed these days.

Interested in talking to all my fellow MODY's

 

[desidiabulum]

Hey guys, I am curious about how you found out you have MODY, and what type? I suspect I have MODY 2.

At diagnosis I wasn't overweight and had T1 in close family, so went around for 2 years with the label 'MODY?' while they did c-peptide and GAD tests to rule out LADA, and then sent further samples to Exeter for genetic tests, which also came back negative. They then concluded I had MODY through a so-far-unidentified gene (they are discovering new genes all the time) -- hence 'MODY X'.
One answer to AlexB's question 'Any MODYS out there?' is that there may be a lot more than we realize, and there are probably a lot of people who have been misdiagnosed
One source reports that' 'a study of 586 children diagnosed with Type 1 diabetes found that a full 8% of them were actually carrying one of the three most common MODY genes. It is likely that a similar number of people diagnosed with Type 2 may also have one of these genetic forms of diabetes, too.'
Tests for MODY are alas expensive and can be inconclusive.
The more you read about MODY, and the problems in predicting it and identifying it, the more complex it appears, and the more absurd it seems to talk about diabetics as either T1 or T2. A wise professor of endocrinology predicted to me a few years ago that we will ultimately be numbering diabetes types in the HUNDREDS.

 

[lewislviola]

History of it in my mums side , although only her generation and down.I am incredibly sensative to insulin and though i had years of not treating it at all i never went into hospital or get very sick with high blood sugar although they always ran from about 18 - 30. I have a very on the ball consultant. From what i have read and heard i think the the feeling is that MODY is a lot more common than people realise

Same here. If I really have MODY 2, it must come from my mom's side. There is a long list... The funny thing is my readings are almost identical to my mom's for a long time. She is always complaining why her medication doesn't improve her BG, but her diabetes didn't worsen either. That's why I suspect she has MODY too.

 

[djr18]

Wow, there is actually another person with MODY1 on here. So glad I am not the only one. I just found out on the 5th January 2014 that I have the HNF4/A mutation (originally diagnosed as type 1 in 2003).

I found out due to the fact that I was training to take part in the Brighton Half marathon and found that I was taking less and less insulin injections to the point I where I only needed about 5 units of Lantus and about 6 units of Novarapid each day. I even did an experiment where I stopped taking insulin for a couple of days and found even though my blood sugar did rise to about 11mmol after eating they did return to about 5mmol after I running ( within 3 1/2 hours). This was not normal for a Type 1 diabetic and so I informed the diabetic clinic.

This all is after taking insulin injections for over 11 years, so my head is spinning and I am still coming to terms with it all. I guess I am about to enter a new phase of my "Diabetic" life.