Help with diagnosis please

[MK Lou]

I’ve just been diagnosed with GCK MODY. No one seems to know what this is. Hospital Dr rang me out the blue with the diagnosis. I’m really confused what it means. Any other MODY diabetics out there please who can share their experiences?

 

[Antje77]

I’ve just been diagnosed with GCK MODY. No one seems to know what this is. Hospital Dr rang me out the blue with the diagnosis. I’m really confused what it means. Any other MODY diabetics out there please who can share their experiences?

Hi MK Lou, welcome to the forum!

The only member I can think of so far who has MODY is @boggle , but chances are he has a different variety of MODY than your GCK MODY, which is also referred to as MODY2 I believe.

Still, he'll likely have done some digging into information on the different types of MODY.
He'll see this thread when he comes back online now I've tagged him.

Until then, can you tell us a bit more? Do you have any symptoms? Why were you tested for it?

From what I've learned from a quick Google search, GCK MODY usually doesn't need treatment, except in pregnancy. Is this what you have found as well?

 

[MK Lou]

Hey, thank you for replying. I was nervous reaching out. Yes GCK MODY is also referred to as MODY 2. Long story short I had gestational diabetes twice. 1st time was on Insulatard & Novorapid. 2nd pregnancy Insulatard & Fiasp carb counting. After delivery diabetes never went away. No longer used insulin though. Was diagnosed with T2D and put on meds but didn’t meet the stereotypical criteria. Referred to hospital, they did tests and I’ve been diagnosed with MODY 2. Usual symptoms, excessive thirst etc. Nothing untoward but I just wondered if anyone out there had it? What were their experiences etc. Feels a bit lonely having this diagnosis when no one seems to really know what it is. Perhaps ignorant comment but is it still as serious, etc...? The questions go round and round in my head

 

[Antje77]

Usual symptoms, excessive thirst etc.

Well, seeing as we don't have many members with MODY (although we might have more than we think, it does tend to get misdiagnosed as T2 or sometimes T1), I guess my reply is better than nothing, despite not having the same type of diabetes as you do.

Do you use a meter to test your glucose? Are you still having those symptoms and high blood glucose during the day now you're not pregnant?
I know very little about GCK MODY (as much as I could learn with a 5 minute Google search to be precise), but what I learned seems to say it's characterised by elevated morning glucose but not much of a blood glucose rise after meals.
Is that your experience as well? (Outside of pregnancy that is, pregnancy makes all thing diabetes different!)

With the carb counting and insulin during pregnancy you'll have found carbs make you rise, and you needed the Fiasp/NovoRapid for that, but do you still rise after eating carbs now?
Many of our members are T2, and they often find that reducing their carbs gets rid of high BG after meals. But I have no idea how this translates to GCK MODY.

 

[EllieM]

Hi @MK Lou and welcome to the forums.

We have quite a few MODY members but not many ones with a high post count. If you do a search for MODY in thread titles you'll see quite a few threads.

Search Results for Query: mody | Diabetes Forum • The Global Diabetes Community

But if you want to share some information about your variety I'm sure it would be very useful for others with MODY.

I am afraid my knowledge of MODY is very limited, just enough to know that it's one of the ones to check for if T1 and T2 don't fit.

 

[MK Lou]

Thank you for taking the time to reply. I’m going to gather as much info as I can. Please remember me as a MODY 2 for the future. You never know when I’m armed with my information, I could help someone else. I’ll make an appointment with my GP to hopefully hear more just hope he’s heard of it!

 

[Antje77]

I’ll make an appointment with my GP to hopefully hear more just hope he’s heard of it!

If he's heard of it, he'll likely know about as much about it as I do, that is, he'll have heard of it but doesn't know the specifics for the different MODY types.
Not his fault, it's just that it's a rare condition.
Can you get a follow up with the hospital on your results and the action needed?

In the mean time, I'd test regularly upon waking and before and after meals to get a good idea on what is happening with your diabetes, and make sure you'll get the results of any blood tests you've had, especially hba1c.

Please remember me as a MODY 2 for the future. You never know when I’m armed with my information, I could help someone else.

I love your mindset on this!
For starters, you can go to your profile and add your type of diabetes. It doesn't have the option to differentiate between the subtypes of MODY, but we sure can use some more MODY's of any type on the forum to support others.

 

[catinahat]

I’m really confused what it means.

I don't usually trust the information on Wikipedia but I think this article could help you
https://en.m.wikipedia.org/wiki/MODY_2

 

[Mrs HJG]

https://www.diabetesgenes.org/what-is-mody/what-is-glucokinase-gck/. All sorts of great info on this site.
If I could choose which type of diabetes to have, I think I'd pick yours!

 

[boggle]

Hey, thanks for tagging me @Antje77 .

Hey Mk Lou, so I also have MODY, MODY 12 phenotype ABCC8. It's been hard to find information because its more associated with congenital hyperinsulinism and transient neonatal diabetes. I think there is 14 known MODY types, but they will probably identify more. Really they are 14 different disorders.

I think the doctors in England like to call MODY monogenic diabetes. This is because our diabetes is caused by a single gene (T2 70+? different influencial gene factors). It is not the same as T1 or T2, as it does work differently. I think for most people with mody our problem is that we can make and produce insulin but we don't release it appropriately. Unfortunately are experience with diabetes is likely to be different.

Did your babies have above average birthweight? How are they? There is a good chance they will also inherit a MODY gene. I was diagnosed with T1 initially (last may) with a hba1c of 104 and then my daughter was born with CHI. Then we got tested and that's how we found out. My next hba1c was 29 and my last two were 31. I was able to reduce insulin and eventually stop it October last year. I have mostly been low carb and keto. Just started carnivore diet. I think I could probably do up too 60g of carbs a day if I wanted too before I would need medication. I do still see a big spike in blood sugar when I wake.

You might be able to reduce your medication if you try low carb for a while. It was a slow process reducing my levels.

All the best.

 

[DEBBIESCOTT]

Hi
I had gestational diabetes in 1997 which never went away, presumed type 2, no meds for 24 years then last May a1c of 128, had test for MODY 1 & 3 a couple of weeks ago (still awaiting results) last October a1c 47 (hopefully lower now) on a not therauptic dose of gliclazide, not even every day & no weight loss
If you look on blood sugar 101 there’s lots of information on MODY,
If you type MODY into Google lots of information comes up, I’ve read it all
Hope you get sorted & feel better soon