Hnf4a not type 1

[Ragdoll21]

Hi all
I was diagnosed with type 1 diabetes in 1993, I have now found out a few weeks ago that I have Monogenic diabetes. I am starting gliclazide 40 mg BD plus 38 units of Lantus.
My diabetic control is poor. I have always found it difficult to control my blood sugar level so I kinda just gave up.
Whilst I was pregnant my control was incredibly amazing , it was very hard work and suffered about 7 hypos a day . It was worth it as baby was born perfect and her blood sugar level stabilised quickly after birth.
It feels odd that I'm not type 1 anymore (or never was).
I'm hoping that having the right treatment for my diabetes will make it easier to control

Kind regards
Ragdoll

 

[donnellysdogs]

Diabetes is diabetes no matter what type you have....

It must feel strange I agree but with a perfect baby.. Well you no doubt know that you do need to look after yourself. 7 ish hypos a day would be a nightmare...I so hope they stop and you can get stabilised with your new drugs.. Please let us know how you get on...

 

[desidiabulum]

Hi all
I was diagnosed with type 1 diabetes in 1993, I have now found out a few weeks ago that I have Monogenic diabetes. I am starting gliclazide 40 mg BD plus 38 units of Lantus.
My diabetic control is poor. I have always found it difficult to control my blood sugar level so I kinda just gave up.
Whilst I was pregnant my control was incredibly amazing , it was very hard work and suffered about 7 hypos a day . It was worth it as baby was born perfect and her blood sugar level stabilised quickly after birth.
It feels odd that I'm not type 1 anymore (or never was).
I'm hoping that having the right treatment for my diabetes will make it easier to control

Kind regards
Ragdoll

Aha! A fellow-MODY. HNF4A means you're pretty special, but the usual rules apply regarding diet and exercise, reducing carbs, etc (which presumably you managed when you were pregnant -- just need to get on that waggon again). How long have you been on insulin? Many MODY types. including HNF4A, can potentially respond well just to gliclazide, but it sounds like you may have progressed a little further.

 

[Ragdoll21]

I've been on insulin for 22years, 15 years Lantus and novo rapid . I've been told hnf4a is rare but don't know the figures.

Kind regards
Ruth

 

[Lamont D]

Welcome to the rare club, rag doll!

 

[Ragdoll21]

Thank you. I have an under active thyroid so my type 1 diagnoses was never questioned, my brother was tested and the result were hnf4a so I got tested.

 

[phoenix]

All types of MODY are uncommon though I think that there still must be a lot of undiagnosed MODY. It's interesting that recently a few people have turned up on the forum with with proper diagnoses. (I think more doctors know about it and testing is much cheaper than it was)
You might be surprised to read that in 2001 a researcher reported that only 13 families had been identified with MODY caused by a mutation in the HNF4A gene. http://www.omim.org/entry/125850 (more since then though but I think it's still much rarer than MODY1 and GCK)

 

[Lamont D]

The same with my condition.
I believe there are many more misdiagnosed as diabetic, just because my condition is to do with hypers and hypos, with similar symptoms.

 

[Robinredbreast]

Thank you. I have an under active thyroid so my type 1 diagnoses was never questioned, my brother was tested and the result were hnf4a so I got tested.

That was a bit of a shock for you, but pleased to see you got a proper diagnosis. Good luck with the gliclazide and all the best for the future. Take care

RRB