New to this forum - MODY

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Max Factor

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MODY
Evening all. New to this forum but not to diabetes. Diagnosed 50 (yes that’s right 50) years ago with MODY (hnf1 alpha gene) and wonder if there’s anyone else on this forum with this particular kind? Although I’ve lived with diabetes for all these years and it running through almost all of my family, there’s always more to learn and perhaps I’ll have some knowledge I can pass on to others. Looking forward to chatting to you. I’ll probably also need help with the forum so all hints & tips gratefully received!
 
Welcome to the forum 🙂
 
Hi and welcome from me too.

How do you manage your diabetes? I have no experience of MODY and very little knowledge other than it is genetic and the testing for it is expensive. Do you need insulin or can you manage it through diet and/or oral meds?
We have a few 50 year Type 1s but I don't think we have any MODY with that sort of experience and in fact I am struggling to think of any regular MODY members. I believe @Stitch147 is suspected to be MODY but can't persuade her GP to fork out for the testing.... apologies if I am wrong about that Stitch. 🙄

Anyway, great to have your extensive experience on the forum and look forward to getting to know you better and perhaps improving my knowledge of MODY.
 
Welcome to the forum @Max Factor

I look forward to hearing more from you. If you are happy to tell us how you manage your Diabetes it can help us in our responses to any questions you have.
 
SB2015 said:
Welcome to the forum @Max Factor

I look forward to hearing more from you. If you are happy to tell us how you manage your Diabetes it can help us in our responses to any questions you have.
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Thanks for your welcome. Happy to tell you more about myself. Diabetes runs in the family, my paternal grandmother and aunt had it, diagnosed years ago (died years ago too). I was diagnosed at 18 when I started nursing in Edinburgh & I was fortunate enough to be treated by a specialist consultant who did the usual urine and GTT and found diabetes. Prescribed a drug no longer used, chlorpropamide (not to be confused with chlorpromazine an antipsychotic). I was on this for years along with a recommended 120g Carb diet which I loosely followed. Moved back to Essex, new consultant who changed meds to Metformi, gliclazide and now alogliptin. Maximum dose of all. However in the meantim, probably’90’ but not too clear on that, my sister was in communication with Maggie Shepherd who was doing genetic research at Exeter and the whole family was tested and voila, mody with Hnf1 alpha gen mutation. Better glucose results when treated with oral hypoglycaemics, so no insulin. Might have to go on it eventually but I’m holding out as my sister, diagnosed at 16 was put on insulin and has been on and off for years has every complication imaginable, even both feet having Charcot deformities, not good. So Ive been lucky and shows the importance of getting the right treatment for the type of diabetes you have.
Sorry to go on for so long but it’s a complicated history and I’ve had it for years! I’d be interested to hear how people on insulin/ sulphonylureas manage a low carb diet.
 
Sorry, outlined details of treatment on another page (general message board I believe) Can you point me to the right page if that’s wrong? Thanks
 
Really interesting story but very sorry to hear that your sister has suffered with such nasty complications.

Max Factor said:
I’d be interested to hear how people on insulin/ sulphonylureas manage a low carb diet.
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I follow a low carb way of eating on insulin and it isn't a problem. I average about 70-90g carbs a day. On a basal/bolus insulin regime you can eat as much or as little or fast for a day if you like and just adjust your doses accordingly because the meal time insulin is separate from the basal insulin which deals with your liver output. I do have to inject for protein about 2 hours after a meal which means an extra injection occasionally, if it was particularly protein rich but having Libre sensors I don't bother to calculate protein but just jab a correction when I see my levels above 8 and rising. Essentially I use my Libre like a very long running slow moving computer game, so if my levels are getting a bit low, I have 3-5g carbs to push them up a bit and if they wander above 8 and rising, I jab some fast acting insulin to bring levels down. Sensors really have been a game changer for managing my diabetes.
 
Max Factor said:
Thank you Lily123. I’m impressed with your figures and would be interested to hear how you lowered them so well. Mine is currently 54 but diet has not been great recently!
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Thanks,

As I’m on insulin and don’t do low carb I might not be of much help
 
Wow that sounds really complicated, but you seem to cope with it well. My problem is that as I have tablets twice a day, they’re in my system and can’t respond quickly to change. i do have too many carbs but not sure how to reduce them without going hypo. I know there’s a lot I can do to improve my diet but any advice gratefully received!
 
Max Factor said:
Thanks for your welcome. Happy to tell you more about myself. Diabetes runs in the family, my paternal grandmother and aunt had it, diagnosed years ago (died years ago too). I was diagnosed at 18 when I started nursing in Edinburgh & I was fortunate enough to be treated by a specialist consultant who did the usual urine and GTT and found diabetes. Prescribed a drug no longer used, chlorpropamide (not to be confused with chlorpromazine an antipsychotic). I was on this for years along with a recommended 120g Carb diet which I loosely followed. Moved back to Essex, new consultant who changed meds to Metformi, gliclazide and now alogliptin. Maximum dose of all. However in the meantim, probably’90’ but not too clear on that, my sister was in communication with Maggie Shepherd who was doing genetic research at Exeter and the whole family was tested and voila, mody with Hnf1 alpha gen mutation. Better glucose results when treated with oral hypoglycaemics, so no insulin. Might have to go on it eventually but I’m holding out as my sister, diagnosed at 16 was put on insulin and has been on and off for years has every complication imaginable, even both feet having Charcot deformities, not good. So Ive been lucky and shows the importance of getting the right treatment for the type of diabetes you have.
Sorry to go on for so long but it’s a complicated history and I’ve had it for years! I’d be interested to hear how people on insulin/ sulphonylureas manage a low carb diet.
Click to expand...
Thanks Max. I look forward to seeing your input on here.
 
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