diagnosed 2yrs ago with MODY HNFA1...been diabetic for 19yrs

[boothyc]

Hi Everyone,
I am a 43 year old woman with 3 children ages 25, 18, and 13 I have been diagnosed with MODY diabetes since 2010 although I have been diabetic since 1993. My daughter was diagnosed with MODY last year at the age of 12 and is currently taking gliclazide for it as it is controlled quite well at the moment...although we have been told that she will eventually be put on insulin as she gets older...I on the other hand am not very good at controlling my diabetes partly as I have massive issues with weight gain and when I take my Insulin (glargine) and tablets (Glimepiride 4mg)I pile the weight on...I have never been overweight and am 5' 3" but I end up well into the 10 stone range bordering 11 when on my meds....Therefore I skip Insulin injections and tablets frequently...I know this is very dangerous and causing me long time health complications...I have already had 6 courses of laser treatment on my eyes for diabetic retinopathy and I am on Amitriptyline and Pregabalin for neuropathy too. I have trouble sleeping due to the pain in my feet and calves...I want to get myself back on track but dont know how to without being overweight and depressed about it...My consultant and nurse are lovely but dont seem to understand how it affects me...I understand that to them my health is of the upmost importance and they want to get that in order first...I have also seen a psychologist to try to overcome how i feel but to no avail...I also suffer with OCD(obsessive compulsive disorder) which can worsen if i am feeling depressed...so its hard to get everything balanced...My last HBA1c was taken this week and was 14.9. It has slightly improved on the one I had taken last August which was 15.7 but I know that it's jusy way too high....I have tried everything I could think of to help keeping the weight off with, over the counter pills to supress my appetite, to not eating anything through the day until evening meal...I also joined a gym 3 times a week and nothing helped...
Has anyone got any advice for me as I am at a loss... :?

 

[Mileana]

Re: diagnosed 2yrs ago with MODY HNFA1...been diabetic for 1

Have you been told whether you have insulin resistance to go with your lack of insulin?

If you look into low carbing, you may be able to lose weight and after a careful discussion and proper blood glucose levels have been confirmed, achieve a reduction in the insulin you need.

When you eat carbs, you need insulin to process it, as it turns to sugar. Protein (meat) and non-starchy vegetables (spinach, brocolli etc etc) does not, or only to a small extent affect your blood glucose levels. Insulin acts as a fat storing hormone, which you have experienced. Not having enough insulin to cover your intake of carbohydrates gives you complications. Taking on board too many carbohydrates for your needs, energy wise, will cause you to put on weight.

The behaviour you have at the moment is bordering diabulimia - meaning you eat, then use the lack of insulin to control weight, at expense of your health short and long term. Please take this seriously for your daughters sake - she will learn from you and will need you for a long time.

Reducing carbs without reducing insulin can send you hypo - reducing insulin without reducing carbs can send your blood sugar levels through the roof. It is a fine balance and one that I would be happy if you would promise me to discuss with your nurse or doctor or dietician. Ask them how to cope with your situation, ask them how to work out your carb/insulin ratio so you can learn to do the maths that you will need to control things in a healthier way.

I will send you lots of hugs and also am grabbing your shoulders and telling you in a stern voice to take it seriously and seek all the help you can get.

Feel free to ask questions of course - but do find someone in your network, professionals and personal, whom you can discuss this with. It is very important!

 

[boothyc]

Re: diagnosed 2yrs ago with MODY HNFA1...been diabetic for 1

Thanks Mileana,
I have made an appointment with my diabetes consultant, the earliest is in august..I am gonna look into low carbing too I have started the glimepiride but not yet bk on the insulin....I think the way to go is one step at a time...My daughter is my world and I must try for her...I have asked wether or not i still need the insulin (due to the recent mody diagnosis) but they just roll their eyes and laugh...I can't remember all the different insulins I have been on...but have gone from one insulin once a day to two insulins four times a day (basal bolus) bk down to one ... I don't really know were I am...
I am so glad I found this forum reading through it I realise I am not on my own and that their is help out there...I would love it if anyone out there is in the same position as I am and if they have any help or ideas to get me back on track..

 

[the_anticarb]

Re: diagnosed 2yrs ago with MODY HNFA1...been diabetic for 1

Hi there

Reading your post reminds me a bit of me! I am suspected MODY, got diagnosed in 1992 but didn't want to know, I also had issues with weight gain and found that if I underdosed on my meds I could keep my weight down. I also never tested myself as I just did not want to admit that I was diabetic.
Fast forward 20 years and I am beginning to see the damage I've done to myself. I had a retinal haemorrhage the other week due to advanced proliferative retinopathy and it was the scariest thing that has ever happened to me. Suddenly I didn't give a **** what my weight was - i just wanted to be able to see properly again.
Now I am facing the fact that I have damaged my eyes, may lose my driving license due to the laser, may not be able to get pregnant again.
At the time when I was inflicting all the damage though, it didn't feel like it would ever end up like this!
I manaaged to get some counselling on the NHS which helped me a lot, but it was only when I got in real trouble with my eyes that I really began to take things seriously. It began by admitting I was a diabetic - my body doesn't work properly as I can't metabolise carbs (without meds) and will never be able to. Once I got over the unfairness of that (a delayed emotional response that I never had in the denial years) then I began to accept it and respect it.
Please sort yourself out before your eyes get bad. Retinopathy is a vicious beast, do not underestimate it! My left eye was fine until six months ago and then - boom - went crazy with proliferation (new vessels) and I'm now having to have a vitrectomy to save it.
I have found this forum to be of immense help in my diabetic journey, it felt like I was on my own before, but this is a friendly site and there's nothing like seeing other people cope with what you have to make you believe you can do it too!

 

[the_anticarb]

Re: diagnosed 2yrs ago with MODY HNFA1...been diabetic for 1

Hi there

Reading your post reminds me a bit of me! I am suspected MODY, got diagnosed in 1992 but didn't want to know, I also had issues with weight gain and found that if I underdosed on my meds I could keep my weight down. I also never tested myself as I just did not want to admit that I was diabetic.
Fast forward 20 years and I am beginning to see the damage I've done to myself. I had a vitreous haemorrhage the other week due to advanced proliferative retinopathy, blood dripping into my eye and clouding my vision, and it was the scariest thing that has ever happened to me. Suddenly I didn't give a **** what my weight was - i just wanted to be able to see properly again.
Now I am facing the fact that I have damaged my eyes, may lose my driving license due to the laser, may not be able to get pregnant again.
At the time when I was inflicting all the damage though, it didn't feel like it would ever end up like this!
I manaaged to get some counselling on the NHS which helped me a lot, but it was only when I got in real trouble with my eyes that I really began to take things seriously. It began by admitting I was a diabetic - my body doesn't work properly as I can't metabolise carbs (without meds) and will never be able to. Once I got over the unfairness of that (a delayed emotional response that I never had in the denial years) then I began to accept it and respect it.
Please sort yourself out before your eyes get bad. Retinopathy is a vicious beast, do not underestimate it! My left eye was fine until six months ago and then - boom - went crazy with proliferation (new vessels) and I'm now having to have a vitrectomy to save it.
I have found this forum to be of immense help in my diabetic journey, it felt like I was on my own before, but this is a friendly site and there's nothing like seeing other people cope with what you have to make you believe you can do it too!