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Which forum to post in for MODY questions?

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OminousPetroleum

Newbie
Messages
3
Type of diabetes
Prefer not to say
Treatment type
Other
Hello, I recently met with an endocrinologist who seems very sure I have MODY instead of my official type 2 diagnosis. He gave me a glucose monitor to wear which basically gave me a detailed view of what's going on and confirmed my feelings of unwellness/current treatment plan not being sustainable. I'm now waiting to get a gene test done so the specific MODY-subtype can be confirmed.

Because I did suspect something was off for a while now, I've looked up a lot of literature the past few months. Unfortunately, I can't find much at all about MODY on the treatment I'm on, so I have no idea if it's safer to continue or not until I get my test results back. While realistically, it will only be a couple of months until then, I'm dealing with multiple hypos/day on my medication, which I don't feel comfortable leaving as is for much longer. I feel lucky that nothing worse has happened so far. This is why I'd like to post about it here, where hopefully more people will see it and can share their experience.

I'd like to specify, this is NOT about asking for medical advice, just gathering personal experiences and maybe some reassurance. Thank you!
 
Jaylee said:
Hi @OminousPetroleum ,

Welcome to the forum.

It a go a place as any other enquiring about MODY. :)
Could you tell us what you are prescribed to treat your current condition?

Best wishes..
Click to expand...
Hi, thank you! I'm coming from reddit where I can't keep up with all the posting rules, so just wanted to clarify anything like that first.

So, I'm currently taking metformin (500 mg x2/day) and ozempic (weekly, 1 mg). I've been taking both for a little over 1 year and almost immediately noticed many more hypos than I did the years before. I was first diagnosed as type 2 in mid/late 2018, so it's only been metformin until more recently. It was prescribed for insulin resistance but I actually lost about 12 kg but still needed a higher dose of metformin since my glucose wasn't getting better. I was still 5-6 kg overweight when I was put on Ozempic and lost another 12 kg since.

Apart from the more frequent hypos, I also noticed that my blood sugar sinks fairly fast, no matter how much or what I eat. I think normally, 2 hours after eating a meal you're still meant to have a slightly raised glucose level; mine is back to pre-meal/fasting levels 1 hour or so after eating. It randomly stabilises or dips into hypo territory after eating. I've at least been able to connect that with carbs, they almost always guarantee a hypo while avoiding any carb helps keep my blood glucose stable/in a healthy range.

Right now, the only thing I can say for sure is that I'm producing too much insulin for the amount of food I'm eating or I'm too sensitive to insulin. Because I've lost so much weight, I have no idea if I had insulin resistance and reversed it, or if it was never an issue to begin with, but it doesn't seem to be a problem now. I've tried eating more but I think it causes more high/low glucose swinging which ends up making me feel sick. I do still get some high glucose readings outside the healthy range, but they're much easier to predict and barely happen anymore.
 
OminousPetroleum said:
Hi, thank you! I'm coming from reddit where I can't keep up with all the posting rules, so just wanted to clarify anything like that first.

So, I'm currently taking metformin (500 mg x2/day) and ozempic (weekly, 1 mg). I've been taking both for a little over 1 year and almost immediately noticed many more hypos than I did the years before. I was first diagnosed as type 2 in mid/late 2018, so it's only been metformin until more recently. It was prescribed for insulin resistance but I actually lost about 12 kg but still needed a higher dose of metformin since my glucose wasn't getting better. I was still 5-6 kg overweight when I was put on Ozempic and lost another 12 kg since.

Apart from the more frequent hypos, I also noticed that my blood sugar sinks fairly fast, no matter how much or what I eat. I think normally, 2 hours after eating a meal you're still meant to have a slightly raised glucose level; mine is back to pre-meal/fasting levels 1 hour or so after eating. It randomly stabilises or dips into hypo territory after eating. I've at least been able to connect that with carbs, they almost always guarantee a hypo while avoiding any carb helps keep my blood glucose stable/in a healthy range.

Right now, the only thing I can say for sure is that I'm producing too much insulin for the amount of food I'm eating or I'm too sensitive to insulin. Because I've lost so much weight, I have no idea if I had insulin resistance and reversed it, or if it was never an issue to begin with, but it doesn't seem to be a problem now. I've tried eating more but I think it causes more high/low glucose swinging which ends up making me feel sick. I do still get some high glucose readings outside the healthy range, but they're much easier to predict and barely happen anymore.
Click to expand...
No worries. You are asking a question.
What numbers are you getting with the lows?

Which sensor/monitor do you use?
Just clarifying so other members might help.. :)
 
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