Replies to This Discussion

Permalink Reply by Knightshade on June 13, 2012 at 1:10pm

Welcome!

I'm also MODY-1, with a transcription of HNF4α.
I was diagnosed a little later in life than you - mostly because my doctors relied on fasting blood sugars far too much (and ignored symptoms that I reported.)

I was the first in my family to have genetic testing done for confirmation...
Still waiting for others to follow suit.

At the moment, I'm controlling with strict diet and exercise...
If you don't mind me asking,
what do you consider good control, and what is your diet like?

Permalink Reply by sparklyredshoes on June 13, 2012 at 1:50pm

Hello Knightshade, nice to meet you! I think you're the first 4α I've "met" who wasn't my family :-)

Re. control I've been pretty lucky so far (I'm still young...ish!), HbA1C generally between 5 & 6. I eat a healthy balanced diet, but don't follow any particular special diet - I'm pretty happy with how I manage it at the moment.

I'm sure you already know, there's a huge amount of variation in MODY patients, even within the same family - my Mum had really good control from just diet for years and years, others are on insulin.

Permalink Reply by Knightshade on June 14, 2012 at 10:28am

Your the first person that I've talked to with the HNF4α form of MODY as well...
Guess that we are a rare breed :-)

So far, my HbA1c has always been in that 5-6 range as well... even without medications.
Going to a moderate carb diet (~80g/day) I've brought it down to 5.3, and usually keep my 2 hour pp numbers < 120 mg/dl

I've been curious about the variation of MODY's manifestation - in that the rest of my family was diagnosed as Type 1 in their teens and being insulin dependent.... mine has manifested itself much milder....
From everything that I've read, with HNF4α insulin production declines at a rate of 1-4% per year... I've been curious if that means that it is only a matter of time until mediations (and eventually insulin) are needed.

Permalink Reply by sparklyredshoes on June 14, 2012 at 10:59am

There does seem to be such a huge variation between individuals that it's certainly difficult to predict when you might need to move on to medications! The impression I get from what I've read is that most (all??) patients do need them eventually.