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Pre diabetes with MODY 3 in family

K

Karen6117290

Newbie
Messages
1
Location
New Zealand
Type of diabetes
Prediabetes
Treatment type
Diet only
Dislikes
Running
Hi all, it seems I can't type much in this text box (think my machine is playing up). But I've recently been diagnosed with pre-diabetes. I have history family of MODY3. The nurse who gave me the blood results told me to research online but I've not been able to find much about MODY3 and was wondering if anyone here has any experience or knowledge of it. I've looked through this site and read the little bit that was here, but are not having any luck googling.
I'm 53, female and have been snacking on broccoli dipped in hummus all morning lol so it's likely to be me and not my machine doing daft things. Any thoughts would be much appreciated, thanks


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Karen6117290 said:
Hi all, it seems I can't type much in this text box (think my machine is playing up). But I've recently been diagnosed with pre-diabetes. I have history family of MODY3. The nurse who gave me the blood results told me to research online but I've not been able to find much about MODY3 and was wondering if anyone here has any experience or knowledge of it. I've looked through this site and read the little bit that was here, but are not having any luck googling.
I'm 53, female and have been snacking on broccoli dipped in hummus all morning lol so it's likely to be me and not my machine doing daft things. Any thoughts would be much appreciated, thanks


Sent from my iPad using DCUK Forum
Click to expand...
Hi I am MODY type HNF4a, (MODY 1) which is rarer than MODY 3 (HNF1a) so there is probably a little more info on your type out there. Your area in the UK will have a MODY nurse specialist. They cover a large regional area, but as Diagnosed MODY numbers are very small, that isn't a problem. The most helpful website is http://www.diabetesgenes.org as suggested by the previous response, but the nurse specialist really is your best bet for personalised information. Normally people with MODY are looked after in secondary care (hospital clinic) as most GPs and practice nurses just won't see it enough to have much experience, but you may get lucky and have someone who has been on a course in your practice. I was helped to find our local nurse specialist through a helpful diabetes consultant on Twitter (there are also quite a few MODY folk on there too), but you can probably be pointed in the right direction by the clinicians in the Exeter clinic to who are responsive to contact. Hope that helps a bit. If you want Twitter names of helpful folk, let me know.
 
Hi,
I'm MODY 3 or HNF1A diabetic.
My understanding is that there is a lot of variability in terms of when and how severe symptoms show up.

This is what I've understood from my reading and from my own observations:

- There is a 50-50 chance of inheriting the mutation that causes our form of diabetes if one of y/our parents is a carrier.
- It is often mis-diagnosed as Type I or Type II and therefore often mistreated
- If medication is needed, we respond very well to a class of drugs called Sulfonylureas
- It is degenerative in the sense that each year we lose a small percentage of capacity to produce an insulin response. Thus, when we are born things are usually normal, and as we age there is often a larger than usual gap between our fasting blood sugar (usually normal at an early stage of the condition) and our post prandial (after meals) blood sugar.
- In my family my father is successfully treated with oral meds and is in his mid-70s. My aunt (his younger sister) is insulin dependent. My cousin (one of her sons) developed symptoms at age 11 and has been mis-treated as Type II until recently and is now on a much lower dose of oral meds for MODY 3 (i.e. glicazide). I'm managing with diet and exercise at age 41. My older brother has indications that he too is MODY 3 but blood sugar are normal enough for him to not yet worry too much about it.
- Family screening is very important since symptoms can develop at various ages (usually but not always in our teens and 20s)
- However, as was the case with me, we can have unhealthy post prandial BS peaks for decades before any symptoms are apparent. Thus early and proper screening is key to early and appropriate treatment.

- For myself I've noticed that activity is extremely important and that I can lower my blood sugar quickly by engaging in short spurts of high intensity exercise. Regular longer sessions of exercise also help keep things in check. I've also noticed that some foods appear to elicit a stronger insulin response compared to others (e.g. animal meat). (We are particularly sensitive to the insulin that we have in our system-even though we don't produce enough on our own).

Here are a couple of research articles. Hope this helps! I'd love to hear more about your experiences and how your are managing things. Any other HNF1A mutants out there? Would love to hear from you.
 

Attachments

Karen6117290 said:
Hi all, it seems I can't type much in this text box (think my machine is playing up). But I've recently been diagnosed with pre-diabetes. I have history family of MODY3. The nurse who gave me the blood results told me to research online but I've not been able to find much about MODY3 and was wondering if anyone here has any experience or knowledge of it. I've looked through this site and read the little bit that was here, but are not having any luck googling.
I'm 53, female and have been snacking on broccoli dipped in hummus all morning lol so it's likely to be me and not my machine doing daft things. Any thoughts would be much appreciated, thanks


Sent from my iPad using DCUK Forum
Click to expand...
 

Attachments

Rodney from Canada said:
Hi,
I'm MODY 3 or HNF1A diabetic.
My understanding is that there is a lot of variability in terms of when and how severe symptoms show up.

This is what I've understood from my reading and from my own observations:

- There is a 50-50 chance of inheriting the mutation that causes our form of diabetes if one of y/our parents is a carrier.
- It is often mis-diagnosed as Type I or Type II and therefore often mistreated
- If medication is needed, we respond very well to a class of drugs called Sulfonylureas
- It is degenerative in the sense that each year we lose a small percentage of capacity to produce an insulin response. Thus, when we are born things are usually normal, and as we age there is often a larger than usual gap between our fasting blood sugar (usually normal at an early stage of the condition) and our post prandial (after meals) blood sugar.
- In my family my father is successfully treated with oral meds and is in his mid-70s. My aunt (his younger sister) is insulin dependent. My cousin (one of her sons) developed symptoms at age 11 and has been mis-treated as Type II until recently and is now on a much lower dose of oral meds for MODY 3 (i.e. glicazide). I'm managing with diet and exercise at age 41. My older brother has indications that he too is MODY 3 but blood sugar are normal enough for him to not yet worry too much about it.
- Family screening is very important since symptoms can develop at various ages (usually but not always in our teens and 20s)
- However, as was the case with me, we can have unhealthy post prandial BS peaks for decades before any symptoms are apparent. Thus early and proper screening is key to early and appropriate treatment.

- For myself I've noticed that activity is extremely important and that I can lower my blood sugar quickly by engaging in short spurts of high intensity exercise. Regular longer sessions of exercise also help keep things in check. I've also noticed that some foods appear to elicit a stronger insulin response compared to others (e.g. animal meat). (We are particularly sensitive to the insulin that we have in our system-even though we don't produce enough on our own).

Here are a couple of research articles. Hope this helps! I'd love to hear more about your experiences and how your are managing things. Any other HNF1A mutants out there? Would love to hear from you.
Click to expand...

@justadad
 
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