Mody Diabetes

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Penelope Devereux

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Has anyone out there got any advice for how to lose weight if you are a MODY diabetic. My dietician can't help me and most people don't understand when I tell them I'm not Type 1 or 2 but MODY. In other words I have a faulty HNF4A gene, which I have inherited and passed on to both my children!

I am insulin dependent 8 Units Levemir am and 5 units Novorapid, with 5 units Levemir and 5 units Novorapid pm. My problem is that in the past few years since going through the change (I'm 51 years old), my insulin levels have become very unstable causing me to have seizures, when hypo, (I have the added complication of being epileptic) !

I used to be 10 stone and I now weigh 16 and a half stone. I have frequent hypos and will do just about anything to lose weight. ( I used to fast but can't do that anymore!) I am currently unable to drive my car, which has had knock on problems with my employment. I am a shift worker in a care home for adults with learning disabilities & mental health problems and work full time. Please help me.
 
Hi Penelope, welcome to the forum 🙂 We do have other MODY members, so hopefully they will be able to provide you with some good advice. How long have you been diagnosed and what sort of diet are you currently following? I'm 51 too, diagnosed aged 49 with Type 1, probably LADA.
 
Hi Penelope other members are MODY so im su re they will be along soon and help you out x
 
I'm another odd, doesn't fit the mold diabetic and the only thing I can suggest is the low carb, low fat, low sodium, low sugar option I'm following. I guess it's a modified Atkins. I'm losing it slowly at about 2 kilos per month. Combine that with a good hour's worth of walking each day and you can make your target weight. I haven't been counting calories or being obsessive about it and could probably lose weight faster if I really tried but honestly, I have enough stresses to cope with, I don't need to be weighing and measuring every little thing too, that's my idea of hell.

Oh yes, I'm 52, going through the change and diagnosed 7 months ago.
 
Northerner said:
Hi Penelope, welcome to the forum 🙂 We do have other MODY members, so hopefully they will be able to provide you with some good advice. How long have you been diagnosed and what sort of diet are you currently following? I'm 51 too, diagnosed aged 49 with Type 1, probably LADA.
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Thanks, Northerner, I've been diagnosed diabetic since the birth of my daughter 21 years ago. They asked me if I was diabetic the day she was born and I said nothing had ever shown up in my urine tests in pregnancy. Jenny, had zero blood sugar levels on birth & made medical history in Bristol Maternity Hospital. My son born 16 months later was also hypoglycaemic at birth, despite me being given insulin in the last 10 weeks of pregnancy. Jenny became insulin dependent at the age of 12, and Jonathan was also checked out and found to have myfaulty Gene. He is diet controlled. Since August last year Jenny has been switched from 19 units of Insulatard once a day to a quarter of a Gliclazide tablet. She has recently started to have hypos again. Teh trouble with us is that we never know when we are going to have an output of our own insulin and when our bodies are going on strike so to speak!
When Jenny was born she spent the first 6 weeks of her life in hospital and nearly died.

With regards to diet I try to eat healthily with yogurt and fruit for breakfast followed by a sandwich for lunch and a main meal eg spaghetti bolognese for tea. My problem is how to maintain my blood sugar levels without having to resort to sugary drinks, chocolate or cereal bars when going hypo. A few months ago a bowl of porridge oats would have been enough for breakfast. Now by 10 am I'm going hypo!
 
Steff2010 said:
Hi Penelope other members are MODY so im su re they will be along soon and help you out x
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Many thanks. I spoke to my daughters consultant, Professor Julian Hamilton Shield, who has written a paper based on my children's and my diabetes and he suggested I spoke to the research department at Exeter, but how to contact them I don't know. If anyone is out there please tell me! I live in Weston-super-Mare and am willing to travel to get advice if necessary.
 
AlisonM said:
I'm another odd, doesn't fit the mold diabetic and the only thing I can suggest is the low carb, low fat, low sodium, low sugar option I'm following. I guess it's a modified Atkins. I'm losing it slowly at about 2 kilos per month. Combine that with a good hour's worth of walking each day and you can make your target weight. I haven't been counting calories or being obsessive about it and could probably lose weight faster if I really tried but honestly, I have enough stresses to cope with, I don't need to be weighing and measuring every little thing too, that's my idea of hell.

Oh yes, I'm 52, going through the change and diagnosed 7 months ago.
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Slowly seems to be the way to do it, but I tried weight watchers and it made my sugar levels go up really high. I lost a stone and a half in 6 weeks great but then I was ill for ages. I have also tried slimming world which worked the best for me but I found the only ever eat carbs diet very monotonous although I did lose 2 and a half stone doing it.
 
Penelope Devereux said:
Many thanks. I spoke to my daughters consultant, Professor Julian Hamilton Shield, who has written a paper based on my children's and my diabetes and he suggested I spoke to the research department at Exeter, but how to contact them I don't know. If anyone is out there please tell me! I live in Weston-super-Mare and am willing to travel to get advice if necessary.
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Our member Nikki aka sofaraway is knowledgeable about MODY and will probably be online sometime in the next day or so, so she might be able to point you in the right direction. It's something that most people have never heard of (as no doubt you've found out over the years!). Given the lack of knowledge of much of the medical profession over even common-or-garden diabetes, it makes sense for you to seek out some expertise. I did find the following website which may be what you are looking for:

http://projects.exeter.ac.uk/diabetesgenes/

There are some contact details on there.🙂
 
Northerner said:
Our member Nikki aka sofaraway is knowledgeable about MODY and will probably be online sometime in the next day or so, so she might be able to point you in the right direction. It's something that most people have never heard of (as no doubt you've found out over the years!). Given the lack of knowledge of much of the medical profession over even common-or-garden diabetes, it makes sense for you to seek out some expertise. I did find the following website which may be what you are looking for:

http://projects.exeter.ac.uk/diabetesgenes/

There are some contact details on there.🙂
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Thanks I'll go and pay them a visit
 
Hi Penelope, I have MODY diabetes too, of the HNF1a variety.

I use insulin and have done for the past 4 years. It seems that you are havign alot of hypos which means you need to eat to keep your blood sugars up which is contributing to the weight gain. You are not on alot of insulin, so you must be insulin sensitive, actually you are on slightly less than me.

I think that by using set insulin doses you are having to 'feed' the insulin. What alot of people do is adjust novorpaid doses on the amount of carbs eaten in the meal, that way the insulin fits with what is being eaten rather than having to eat enough to meet the insulin dose. There are course that you can go on to learn this technique, DAFNE is one of them.

The guys at Exeter are great you should really try and contact them, Maggie Shepherd always replies very quickly when I have emailed in the past and she was lovely when I went to Exeter to meet them. Have a look on the website that Northener gave and see if you have a MODY link nurse in your area. My DSN is one of the link nurses.

if I can be of any more help please let me know.
 
Hi sofaraway,

I tried e mailing a lengthy letter to the person Northerner suggested and they returned it as SPAM so am not sure how to contact them!

Penny
 
Mody

Penelope Devereux said:
Hi sofaraway,

I tried e mailing a lengthy letter to the person Northerner suggested and they returned it as SPAM so am not sure how to contact them!

Penny
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I just read your info on MODY, really good stuff. Ididn't know I was a MODY type until Jenny was 12 and they foudn she had it and I said we were a 5 generation diabetic family, she is now 20. IWe were part of a paper on MODY done by Professor Julian Hamilton Shield although he didn't get our history quite right when he publsihed it. I'll give yout hge link incase anyone is interested. It's called "Macrosomia & Hyperinsulinaemic Hypoglycaemia in Patients with Heterozygous Mutations in the HNF4A gene" http://www.plosmedicine.org/article/related/info
 
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