Living with MODY and complications

[FKLM]

Hi, my name is Fiona and 11 years ago, I was diagnosed with MODY at the age of 15. At the time I was diagnosed, not only was I immature, but my consultant was also my dad's and assumed I knew it all, despite him being Type 1. I rejected the fact I was diabetic, I hated it. I never test, I hate people looking at me doing it.

I also suffer pretty badly on and off from severe depression and anxiety. There are days when truly, I just think it's easier to just put an end to it. Aside from feeling rubbish, I have gained weight which affects my confidence, I want to hide and just don't want to be around people. Pity party of one. Thank god I have my dogs now, because I couldn't bear leaving them.

After over 10 years of being treated with metformin, I started to have diabetic diarrhea. It's horrible, I feel rubbish, want to sleep more, having more complications, sugar levels in the 20's and despite having the most amazing nurse, still feel like I'm alone.

Just wondered if there were any other MODY patients who struggled to maintain? I've heard so many horror stories and at my last appointment, the discussion of having a will came up. Apparently there's Harvard research to show that MODY in women particular can led to early death. I just really want to hear a success story. Any help or tips on changes I could make would help! Right now, feel so out of control, which is a trigger for my anxiety and depression.

 

[azure]

Welcome @FKLM

I don't have MODY but we do have some members here with that type of diabetes.

Have you been offered any other medication to control your blood sugar, eg insulin? With sugars that high, you must be feeling really rough. I find erratic sugars can affect my moods too, so that might be contributing to your feelings a bit.

 

[FKLM]

Welcome @FKLM

I don't have MODY but we do have some members here with that type of diabetes.

Have you been offered any other medication to control your blood sugar, eg insulin? With sugars that high, you must be feeling really rough. I find erratic sugars can affect my moods too, so that might be contributing to your feelings a bit.

Hi Azure,

The nurses want to stay away from insulin and have added dapagliflozin. It's a viscous cycle, I've developed a sensitivity to metformin and daily, am sick. The gliclazide I take made me put 2 and a half stone on in 2 weeks, and I need to keep taking this alongside the metformin until I have lost some weight. The dapa is meant to help but can only be taken with metformin.

The concern is not just a sensitivity but a loss of functionality in my pancreas and potentially, kidneys. I lost my dad last year and the symptoms of stress where showing, mainly in my HBa1C. But looking more closely over a year on, the symptoms are the same but it's not stress making me feel this rubbish.

It's so disheartening, after 9 years of struggling, I was on track and now, I feel like I'm no where near step one; it's like i'm step -101. Just really hoping to find someone who's been through this. No one in my clinic has complications with MODY, few people even have it. I don't know whether to start looking for a MODY specialist, because I'm not sure my consultant is...

One gripe I have is I get passed from pillar to post with the NHS. Between being batted back and forth being GP and clinic, them changing my diabetic nurse, I've had different consultants, it's hard to find people I trust. Having anxiety, I can't always been honest and open about things straight away. Had the consultant and nurse not changed, maybe I would've open up sooner and it been picked up earlier...

 

[azure]

@FKLM I'm about to log off but will reply properly later and see if I can find some of the MODY members and threads for you.

It sounds a very stressful and frustrating situatiin for you. Yes, if you can see a consultant who has expertise in MODY, I'd definitely take up that option.