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What is MODY diabetes?

Do you have MODY diabetes? We got this message from someone who is looking for others with MODY  to connect with. 

Hey all!

Wondering if there is anyone with MODY here? Diagnosed with Type 2 diabetes in January, Type 1.5 diabetes in June, and MODY yesterday. But my case was described as a curious case indeed by the specialist, truly bizarre…

What is MODY diabetes?

MODY is a monogenetic form of diabetes, which accounts for between 1-3% of all diabetes cases. It’s considered rare… if your parent has the genes, there’s a 50% chance you will get it (although I seem to be the very first in my family!) treatment varies depending on what type of MODY you are and the combinations of your particular genetic mutation. Sometimes you will respond with oral meds, sometimes you require insulin. Thats what I’ve picked up so far! Find out more here.

My journey with MODY

After being symptomatic from mid 2010, 1st diabetes diagnosis Jan 2011 (GTT 12.9, sugar in my urine, random test 10.3), June 2011 sugars completely normalise ( GTT 6.1. stop all my meds). They have stayed this way since then – no particular diet, no meds, no supplements.

Specialist was fairly baffled, says its MODY and hinted that it will probably be back someday. GTT every 18 months forever till then. Stranger still, no MODY or diabetes at all for that matter in my family, meaning I would be the very first in this line.

Initially, based on the fact that I was diabetic, but sugars weren’t shockingly bad, my GP said I had Type 2. However, when I had my first appointment with CDE and my nurse educator, she said that based on my profile that there was no chance I was Type 2, but rather that since my sugars were still relatively mild, that I was a Type 1.5 – we could test but no point as she was sure. A second nurse educator also said I wasn’t Type 2, and actually mentioned MODY as a possibility.

Full history of results

Then I had an appointment with the specialist physician yesterday who took account of my full history, all my results, etc and said that most diabetics were pigeon hole Type 1 or 2, but that I fell into neither category. However he said that the fact I had diabetes earlier was indisputable, which means I fall into the MODY category, since its not gestational diabetes (never been pregnant). He says there is a genetic test you can do, but it’s pointless since his advice will be the same – we wait and watch!

First sign of trouble back on medication. There are 6 known types of MODY so no idea which I would fall into! Still waiting for a final hormone test to make sure its not a pituitary problem, but the first of 2 was fine. I think what is most strange about it is the fact that it came and went, hence we want to make sure the pituitary is functioning normally to rule that out.

Wanting to know if I can share notes with someone!! Any MODY’s out there??

– Kirsten Marx

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2 Comments

  1. Philly_P Philly_P

    I have to ask, why is this the first time I am hearing about MODY!? I was diagnosed as a Type 1. They then changed that to Type 2. Then said I was in the honeymoon phase. Now I am back to being a Type 2. Except here is the catch. I’m 29, weigh 58 kilos and have been fit and healthy since i remember. My diet, for the most part, has been excellent. Cravings for chocolate and sweets were few and far between. Alcohol intake low. I often pass on butter and marg and don’t eat dairy (allergies). The only person i know of in my entire family who was diabetic was my grandmother (she lost her eyesight as a result). I go through stages where my sugar, through diet alone, is perfect (beween 4 and 6). Without changing a single thing in my diet, routine or exercise, my sugar spikes and sits between 7 and 9 for periods of a week to 2 weeks. Whilst these are still reasonable levels, the headaches, nausea, blurry vision, frequent urinating, shaking etc that comes with these levels is no longer tolerable for me.
    Thank you for sharing with us because as a result i am going to go back to my diabetic educator and am going to ask her more about MODY!

    • Hi Phillipa,
      Apparently MODY is a very rare form of diabetes – I’d never heard of it and I’ve had diabetes for years. I think ask your diabetes educator – it’s obviously very case specific!
      Good luck and please let us know what happens,
      Bridget

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