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MODY

Knitter

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12
I was diagnosed with Glucokinase MODY a few years ago and other than during pregnancy I have required no treatment just monitoring. However my cholesterol has taken a sharp increase and they are talking about statins to control it. This is making me think that it could be the beginning of the condition progressing and I want to do what I can to support my body through weight loss and healthy eating.

I have never spoken to anyone else with MODY and was just hoping to hear the experiences of others with the same condition.
 
Welcome Knitter and sorry that your post seems to have been ignored.

I am bumping it up in the hope that people can answer you.

Take care,

CC.
 
Hi there, I was diagnosed with the same condition last year whilst pregnant with my 2nd child. I was treated for gestational diabetes with my 1st pregnancy and at the start of my 2nd pregnancy. I was on metformin & insulin early at start off my 2nd pregnancy but these were making me unwell due to having naturally higher blood sugars so it was then decided to do further tests which revealed glucokinase MODY. I was taken off all medication and monitored rigidly with lots of appointments and scans to check baby growth rate until the birth but haven't had a check up since. It was a difficult time but worth it as little one grew at normal rate. I think I'm to be checked annually. I'm to have a healthy diet but since our baby arrived & breastfeeding, I've developed a bit of an appetite for all things naughty. I really must get myself back on track. I hope that you are keeping well.
 
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Hi, welcome to the forum. It's not nice to see more people with diabetes but it is good to see that some people are getting diagnosed properly rather than being just told that they have T2.
I'm not sure that there has been anyone else on the forum that has been diagnosed with MODY 2. It's something I've read quite a bit about so I hope you don't mind me commenting from something that I have read recently. (and it is just what I've read so just my thoughts based on that)

Just for others reading , MODY 2 is caused by mutation in the glucokinase gene. The mutation results in mildly increased blood glucose from birth and may not always get discovered (pregnancy sometimes reveals it) . It doesn't normally need any medication except during pregnancy .

Recent research published by Professor Hattersely and his team from Exeter concluded that people who had had the condition for more than 40 years had a ' low prevalence of microvascular and macrovascular complications' This was in spite of an average HbA1c of 6.9%. http://www.ncbi.nlm.nih.gov/pubmed/24430320

A previous study in Czechoslovakia also looked specifically at the long term risks concerning macro vascular risks . That's relevant since you mentioned statins.
They compared 27 family members with the mutation against 24 family members without the mutation Their ages ranged from 35 to 79 years old (so they weren't just looking at young people, not many people but there really aren't that many people who have had the genetic tests and been diagnosed with it)

They found no difference between those with and without the mutation either in the thickness of the walls of their arteries or in the number of strokes and heart attacks they had . They said , that the results indicated' that the natural course of mild lifelong hyperglycemia is associated with a low risk of developing diabetic macrovascular complications.'

So that is good news...................... but they also gave an opinion that:

" patients with GCK-MODY should take steps to reduce the risk of developing “classical” type 2 diabetes in addition to GCK-MODY that is, avoid obesity and maintain a high level of physical activity" http://www.hindawi.com/journals/ije/2013/718254/


What I think they mean is that though your risks for heart disease are similar to a brother or sister without the mutation ,it's wise to take care. It's important not to have too 'naughty' a diet and make sure you keep up an active, healthy lifestyle. In many ways, just the same advice as for everyone else . MODY 2 isn't associated with the insulin resistance seen in T2 but it probably doesn't make you immune from it either. (and you are starting with already increased glucose levels)

I think though that if I were in your position about statins, I would discuss my heart disease risk with my doctor. I would ask whether they would prescribe a statin to someone of the same age, gender, weight and other risk factors and if not whether they were applying risk factors from T1 or T2 rather than from MODY 2.
ne
 
Wow - thanks for the information, a lot to take in. I was very lucky in that my Consultant and diabetic nurse were of only a few specialists trained in glucokinase MODY within the country and both at my local hospital. They were very knowledgeable and gave me lots of advice. I was the hospitals only 2nd pregnancy with this condition so they were keen to see how I was keeping. I signed up to give help into research with Exeter for this condition. I was keeping a good enough diet & active prior to little one - I did kickboxercise right up to 36wks! Think I've gone off track slightly due to being tired and breastfeeding giving me an appetite.
 
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