MODY

ExChocoholic said:

I have been advised third party endocrinologist that as a slim T2 with a family history I should be checked for MODY - metformin doesn't work on MODY it is not Type 2 and there a varying kinds of MODY and a machine in Exeter can diagnose - well as a slim T2 nothing is working on lowering BS stuck around 10-13 so I am going to ask GP to refer to Endocrinologist who has asked to see me. So rare many GPs not aware of it.

Click to expand...

Have you had the T1 (LADA) tests, C-peptide and GAD?

Hi there,

I'm a Mody3 (HNF1A gene), is there anything in particular you want to know? I may not be able to answer if it's a different variant you're interested in, but there's no harm in asking!

As a (mis?)diagnosed type 2, have you even been put on Gliclazide, and if so, was your blood sugar more stable on small amounts? Mody3 variants can try Gliclazide and even though I had been diagnosed as type 1 for 30 years before being changed to a Mody3 diagnosis, I did find that Gliclazide worked and I didn't have to take injections. Ultimately, I found this too restrictive as I had to eat even if I didn't want to, so the regime didn't work particularly well for me, but it may work for you.

@ExChocoholic and @_petal_ really interested in both your posts. I am also a slim type 2 (diagnosed a couple of months) little or no response to metformin. Started low dose gliclazide a week ago and my sugars have gone from all over the place 10-24 to 4, 5 and 6s in the space of a week with no change of diet. Also have a huge family history father uncles aunts cousins grandmother who are or were all treated with either gliclazide or another med in the case of my uncle Tolbutamide, or insulin. Now wondering if perhaps this mody thing is the answer. Going to do some reading now!

Also meant to say I am just taking 40mg of gliclazide once a day and my dr has said not to increase it but to stop the metformin now

ExChocoholic said:

_petal_ as you see I have no answers yet. As soon as I do and if MODY would like to exchange info. The one thing I am unsure of is 'early onset' diagnosis mentioned. Not diagnosed until mid 50s and only then because I asked for thyroid test. I was a College Lecturer but keep feeling so tired - my son and daughter have Hashimoto's thyriodism so thought I should get checked. Diabetes dx was a blow as did not have noticeable symptoms aside of weariness and tbh I thought it was age plus a tough job and it probably was. My father's family in Canada so had little knowledge of family history medically. Dad complained of his feet troubling him for years and constantly being dry plus sweet tooth. Sadly passed away in 2005 aged 85 - never checked or diagnosed. Retrospectively with mine and brother's dx 2007 - it seems likely he could have been diabetic.

Click to expand...

Hi! Yes people can be diagnosed with MODY3 (I'm less familiar with other types) at an older age. Although many are diagnosed in their teens or early 20s, there are also many diagnosed later. And I suspect that there are many who never were diagnosed but who might have been at an older age, as may have been the case for your dad it sounds like.
I had a proactive OGTT at age 40 that discovered diabetic BG levels at the 2 hr mark (but high normal fasting). The gap between fasting and post-prandial sugar levels is common of MODY3ers. Had I not figured out that my father likely had MODY I would not have been tested, and since my A1C was pre-diabetic, I'm not sure when a diagnosis would have come (probably not for a number of years). Currently not on meds and managing with diet and activity reasonably well for now. Through the monogenetic registry at the University of Chicago I was able to be put in touch with a family who apparently had the exact same HNF1A mutation (there are many variations) that we have in my family. In their case they all developed diabetes in their teens and were in need of insulin injections. Still a lot more to be understood about it all.

Best,
R