MODY

[Deleted member 391597]

Hi,

I've recenetly been given a diagnosis of MODY after having blood work done at Exeter University. This comes 2 and a half years after being diagnosed as a gestational diabetic, then Type 1 and then Type 2! Curious to find out how many others are effected by MODY and what treatment regimes you use?

Look forward to hearing from you!

 

[SB.25]

Hiya, I’m currently awaiting my test results to come back from Exeter - I was told they take approximately 8 weeks? Is that how long yours took?

They are not sure on my diagnosis at the moment, but they think it may be MODY, but I’m on both basal and bolus insulin and was so within 3 months of diagnosis.

They have said that even with a MODY diagnosis they do not think I will ever be able to come off of the long acting insulin.

What treatment are you on?

 

[Deleted member 391597]

@SB.25 Can I ask what made them test you for MODY? My results took about 3 months to come back and I think my consultant fast tracked them as I had found out I was pregnant again. I am also on a basal/bolus regime but was told I could come off this and try taking oral meds instead but don't want to risk or change anything while I am pregnant. Doesn't seem to be much information about MODY and every medical professional I have seen since being pregnant (doctors/nurses/midwives) have never heard of it!

 

[DCUKMod]

I think @Diakat is MODY?

 

[Diakat]

I think @Diakat is MODY?

Sorry all, no I’m not I made a joke in the moderator nominations thread trying to get various types involved. I do admit to being very moody but that’s different.

 

[SB.25]

@SB.25 Can I ask what made them test you for MODY? My results took about 3 months to come back and I think my consultant fast tracked them as I had found out I was pregnant again. I am also on a basal/bolus regime but was told I could come off this and try taking oral meds instead but don't want to risk or change anything while I am pregnant. Doesn't seem to be much information about MODY and every medical professional I have seen since being pregnant (doctors/nurses/midwives) have never heard of it!

I’m being tested for MODY as they are unsure if I am T1. I had the GAD tests which were negative but my C Peptide was very low (and my blood glucose at the time was high) so they decided to test for MODY. My mum is also diabetic and was diagnosed as -T2 at 40 (although she also has never been over weight) but she is on insulin too.

I don’t think my consultant is convinced I am T2 given my age (26) and weight and also combined with the fact it seems I am not insulin resistant (like a lot of T2 are). My problem seems to be I don’t make a lot of my own insulin.

It’s all so confusing !

 

[DCUKMod]

Sorry all, no I’m not I made a joke in the moderator nominations thread trying to get various types involved. I do admit to being very moody but that’s different.

Ooopos. See, I believe everything you say !

Can I warn you for that? OK, maybe not.

 

[Robinredbreast]

Hi,

I've recenetly been given a diagnosis of MODY after having blood work done at Exeter University. This comes 2 and a half years after being diagnosed as a gestational diabetic, then Type 1 and then Type 2! Curious to find out how many others are effected by MODY and what treatment regimes you use?

Look forward to hearing from you!

Hi, I know of only one person with MODY (Maturity Onset Diabetes of the Young) and she was in her 20's when diagnosed. Good luck, but once diagnosed with a medial condition then treatment, help and support can be introduced.
Good luck

https://en.wikipedia.org/wiki/Maturity_onset_diabetes_of_the_young

 

[Deleted member 391597]

Most people seem to be in their 20's. I was 27 when I got pregnant with my daughter and was then diagnosed with gestational diabetes in my third trimester which they questioned because my bmi was in normal range. They believed I was developing Type 1. Came off medication for 6 months post birth and ended up in dka! Asked for the antibodies tests which were negative so was then treated as Type 2 until genetic testing proved otherwise. Still seems to be so rare...would rather be without this dodgy gene but there we go!

 

[Alexemily]

Hey I’m mody aswell, mine runs really strongly in my family so luckily was picked up before my pregnancies as I know it’s really hard to diagnose! And yes omg I’ve never ever come across a doctor/midwife who’s ever heard of it bar the specialists, I’m still breastfeeding my second so on insulin but they are keen to put me on something called repaglanide once I’ve finished feeding

 

[Rose22]

Hey I’m mody aswell, mine runs really strongly in my family so luckily was picked up before my pregnancies as I know it’s really hard to diagnose! And yes omg I’ve never ever come across a doctor/midwife who’s ever heard of it bar the specialists, I’m still breastfeeding my second so on insulin but they are keen to put me on something called repaglanide once I’ve finished feeding

Hello, I’m waiting to see nurse for my cpeptide results and a letter came through from the consultant saying I may have MODY, family history of diabetes over 3 generations and I had gestational twice. They automatically said I was type 2 when my blood sugars jumped, and have gone up steadily since. I don’t fit the type 2 profolie, not obese dont have high cholesterol or blood pressure etc fairly young. The letter says to try Repaglinide...did you find this helped? I was on Gliclazide but made me go to low, even the lowest amount. I’ve read MODY tend to be very sensitive to sulpyuneras..sorry spelt wrong!