MODY diabetes

Status
Not open for further replies.
Lucyr

Lucyr

Well-Known Member
Relationship to Diabetes
Type 1
Does anyone have MODY diabetes or know how this type of diabetes is identified?

I don’t suspect I have it as I don’t have much family history of diabetes, but it was mentioned in an appointment as something that is sometimes tested for in certain people.

I realised that I don’t think I’ve ever seen someone on here suggest that a poster asks for testing for MODY. So wondered how would we know it could be a possibility and how do the medics that do test for it decide who to test?
 
Hi Lucy I’ve been tested for all strains of MODY. I saw a private endo who was pretty convinced I was MODY so he ordered the testing through NHS. Alas I was negative so back to the drawing board. @scottwatters was also tested negative for MODY recently. We both waited many months for our results.
 
EmmaL76 said:
Hi Lucy I’ve been tested for all strains of MODY. I saw a private endo who was pretty convinced I was MODY so he ordered the testing through NHS. Alas I was negative so back to the drawing board. @scottwatters was also tested negative for MODY recently. We both waited many months for our results.
Click to expand...
Thanks. What made them convinced you could be MODY - family history or the way diabetes presented or something else?
 
@Max Factor posted on Jan 2nd this year about his MODY. I don’t know how to put a link to his thread in my post. It was called “New to this forum - MODY”.
 
Lucyr said:
Thanks. What made them convinced you could be MODY - family history or the way diabetes presented or something else?
Click to expand...
The fact that I’d had blood sugar irregularities for 20 years prior. Apparently my hba1c on diagnosis was typical (55) and I suppose that because I wasn’t fitting any other category. I wasn’t convinced because there is no family history and was told that with MODY it’s a bit like having an internal thermostat that’s set a little high… still works but it’s just higher and most with MODY will hover around the threshold for a diabetes diagnosis, so just because it hasn’t been picked up doesn’t mean they don’t have it.
 
I think @Stitch147 has a diagnosis with MODY.

It’s a monogenic form of diabetes (as I understand it there are a few variants)

I think there are specific genetic tests that can be run to co firm a diagnosis.
 
everydayupsanddowns said:
I think @Stitch147 has a diagnosis with MODY.

It’s a monogenic form of diabetes (as I understand it there are a few variants)

I think there are specific genetic tests that can be run to co firm a diagnosis.
Click to expand...
I believe she has not had any tests to confirm.
As I understand it there is more than one category of MODY and the management are different.
 
I looked up the MODY types and I don’t think any of them feel like me. They seemed to be about seemingly T2 diabetes developing when you’re young (yep I was 21) but then certain tablets working extremely well (I don’t think they did). This page explained the main types simply enough

www.newcastle-hospitals.nhs.uk

Maturity onset diabetes of the young (MODY) - Newcastle Hospitals NHS Foundation Trust

MODY is a dominantly inherited genetic condition, which means children of an affected parent with MODY have a 50% chance of inheriting the gene and developing MODY themselves.
www.newcastle-hospitals.nhs.uk www.newcastle-hospitals.nhs.uk

It seems that it would be hard for us to spot someone who could be MODY, in the way people regularly spot people who could be type 1. Then if we do notice someone could be MODY that it would likely be hard to get tested.

In 14 years of diabetes it had never even been mentioned in an appointment until yesterday
 

Attachments

  • 88F365B3-FF24-4F84-B320-27F90EFAB25E.png
    88F365B3-FF24-4F84-B320-27F90EFAB25E.png
    72.8 KB · Views: 6
My doctor suspects I'm MODY but won't test due to costs. So I am just treated like a type 2.
 
Stitch147 said:
My doctor suspects I'm MODY but won't test due to costs. So I am just treated like a type 2.
Click to expand...
How do you think your treatment would be different if you were tested and diagnosed as MODY?

I'm just curious, especially given that one of the drugs you're taking is often prescribed for MODY.
 
Spathiphyllum said:
How do you think your treatment would be different if you were tested and diagnosed as MODY?

I'm just curious, especially given that one of the drugs you're taking is often prescribed for MODY.
Click to expand...
My treatment would probably be the same in reality. But it qould be nice to know if I am just in case of further issues down the line.
 
Spathiphyllum said:
How do you think your treatment would be different if you were tested and diagnosed as MODY?

I'm just curious, especially given that one of the drugs you're taking is often prescribed for MODY.
Click to expand...
Nice to know as MODY is genetic so could mean family are screened if they have any symptoms, or maybe they could get screened as a precaution.
 
My consultant was pretty adamant that I had MODY GCK. I was never convinced because I have positive anti gad. There was talk that if I tested positive my children could get tested but probably not siblings/parents etc partly due to cost of the testing but mainly the advancing age means these people would be displaying symptoms already if there was an issue
 
Status
Not open for further replies.
Back
Top