MODY - do I have it?

[Jojobunbun]

Firstly, hello! I’m new to the forum but sadly not new to diabetes. I know you are not medical professionals but if any one has been diagnosed with MODY I’d love to hear from you!

I was first Diagnosed as Pre-diabetic back in 2009, where a blood test showed my blood sugars were slightly high, Now I am fully aware that is a massively long honeymoon period which makes me think I could have MODY. I was 21 then I’m 32 now and have never been overweight, my BMI is 21.

I have a strong family history of diabetes, on my maternal and paternal side.
I’ve got two children and both times I’ve been diagnosed a “gestational diabetes”, but to be honest I think my blood sugars are slightly higher whether I’m pregnant or not, for example, after eating 50g of carbs (white bread and some pineapple) and walking for 30mins my bloods were 9.3. My GTT during pregnancy was 8.3.

Does anyone have experience of MODY? I’m concerned that my sugars are slightly higher than what they should be and I’ve been like this for 11 years now! I will be chasing up with my doctor, as I don’t feel I fit into T2 diagnosis.

 

[NicoleC1971]

Firstly, hello! I’m new to the forum but sadly not new to diabetes. I know you are not medical professionals but if any one has been diagnosed with MODY I’d love to hear from you!

I was first Diagnosed as Pre-diabetic back in 2009, where a blood test showed my blood sugars were slightly high, Now I am fully aware that is a massively long honeymoon period which makes me think I could have MODY. I was 21 then I’m 32 now and have never been overweight, my BMI is 21.

I have a strong family history of diabetes, on my maternal and paternal side.
I’ve got two children and both times I’ve been diagnosed a “gestational diabetes”, but to be honest I think my blood sugars are slightly higher whether I’m pregnant or not, for example, after eating 50g of carbs (white bread and some pineapple) and walking for 30mins my bloods were 9.3. My GTT during pregnancy was 8.3.

Does anyone have experience of MODY? I’m concerned that my sugars are slightly higher than what they should be and I’ve been like this for 11 years now! I will be chasing up with my doctor, as I don’t feel I fit into T2 diagnosis.

Hi! No personal experience but have a friend who feels she is \MODY due to her family history too. She experienced trying to get it diagnosed which has been tricky since it is a genetic condition and is rare.She has a daughter and wanted to know because her daughter was showing signs of insulin signalling issues.
The tests that would confirm type 1 would be c peptide for insulin levels and the antibody tests. You do not need to be fat to have type 2 btw, it is just a question of how tolerant your body is of carbs. IF you are type 2 the insulin fasting test would show you had high levels of insulin (insulin resistance) and you might have high blood pressure and some blood lipid abnornomalities (low hdl and high triglycerides for example).
I am unsure how available those tests are on the NHS but hope you can get to see a diabetologist for a clear diagnosis.
ps pregnancy is a time of natural insulin resistance so if you are the type of person who for genetic reasons can't make enough insulin , GD will show up then.
The reason you are not fat may well be that your body can't convert the excess carbs into fat using insulin and is instead pushing the excess into your blood stream (diabetes). This is why not all fat people are diabetic and not all diabetics are fat!

 

[Antje77]

Hi @Jojobunbun , and welcome to the forum!

With the history you describe I would mention MODY to my doctor. Have you had your hba1c tested and does it reflect higher blood glucose?

 

[Jojobunbun]

Hi! No personal experience but have a friend who feels she is \MODY due to her family history too. She experienced trying to get it diagnosed which has been tricky since it is a genetic condition and is rare.She has a daughter and wanted to know because her daughter was showing signs of insulin signalling issues.
The tests that would confirm type 1 would be c peptide for insulin levels and the antibody tests. You do not need to be fat to have type 2 btw, it is just a question of how tolerant your body is of carbs. IF you are type 2 the insulin fasting test would show you had high levels of insulin (insulin resistance) and you might have high blood pressure and some blood lipid abnornomalities (low hdl and high triglycerides for example).
I am unsure how available those tests are on the NHS but hope you can get to see a diabetologist for a clear diagnosis.
ps pregnancy is a time of natural insulin resistance so if you are the type of person who for genetic reasons can't make enough insulin , GD will show up then.
The reason you are not fat may well be that your body can't convert the excess carbs into fat using insulin and is instead pushing the excess into your blood stream (diabetes). This is why not all fat people are diabetic and not all diabetics are fat!

Thanks so much for your reply,

definitely not got high BP, as was tested throughout pregnancy, it was roughly 90/60 so on the lower side of normal. And interesting my fasting bloods are always within range, morning bloods were always 3.8-4.5, my GTT result was 3.8 for fasting.

I’m going to push for more testing, I was being tested when I was about 22 by diabetic specialist but the Doctor in question started making inappropriate comments regarding whether I had a boyfriend and also saying I was pretty so I never went back!! I really should have complained but was a bit too young and naive!

 

[Jojobunbun]

Hi @Jojobunbun , and welcome to the forum!

With the history you describe I would mention MODY to my doctor. Have you had your hba1c tested and does it reflect higher blood glucose?

Hi @Jojobunbun , and welcome to the forum!

With the history you describe I would mention MODY to my doctor. Have you had your hba1c tested and does it reflect higher blood glucose?

Hi! I’ve not had a HBa1C for a while now, but it’s always been in range, was slightly higher when my BMI was 23 and then dropped as I lost a bit of weight/ got more active! I’ll be chasing up my most recent one which I had during pregnancy x

 

[NicoleC1971]

Thanks so much for your reply,

definitely not got high BP, as was tested throughout pregnancy, it was roughly 90/60 so on the lower side of normal. And interesting my fasting bloods are always within range, morning bloods were always 3.8-4.5, my GTT result was 3.8 for fasting.

I’m going to push for more testing, I was being tested when I was about 22 by diabetic specialist but the Doctor in question started making inappropriate comments regarding whether I had a boyfriend and also saying I was pretty so I never went back!! I really should have complained but was a bit too young and naive!

I don't blame you for not going back!! He doesn't sound very professional anyway. try and get referred to a bigger centre where they will have seen more MODYs!
I feel that whatever your 'type' low carb might also provide a clue e.g. if you go low carb this should help your blood sugars normalise but take care if you are taking any kinds of meds that lower your blood sugar (I can't recall if you had been started on anything). It may also provide a useful clue to whatever consultant you end up with and is a healthy way to eat in any case (see this site or Diet Doctor for practical ideas).

 

[Brunneria]

Hi and welcome,

the only way to know for certain is through genetic testing. You seem to fit ‘the profile’ for MODY with regard to age of onset and BMI, but profiles are never definitive.

I hope you can get your doc to run the genetic tests, or refer you to someone who will run them.
If that doesn’t happen, you could go the private route.
In your situation, I would definitely want the testing done, for clarity, and because MODY requires a specific Treatment pathway.

https://www.diabetes.co.uk/diabetes_mody.html

 

[Jojobunbun]

I know it’s been some years since I posted, but just wanted to update that I have finally been diagnosed as a MODY diabetic!! I’m actually so happy to finally have answers!

 

[Outlier]

Well done for your persistence and application!