MODY testing ...

[DavidR88]

Hi all, decided to sign up here and see what else I can learn.
I was diagnosed as LADA on 13/11/19 and supplied NovoRapid. This brought my BS down from 25mmol to around 12. Levemir helped bring it down to between 5-7.
apparently my bloodwork doesn't point towards type 1, LADA or type 2 so I have had bloods sent for MODY testing.
I suffer psoriasis and as such the koebner phenomenon which makes injecting difficult. I have been assessed for a pump (thinking omnipod or accu check insight) but this will be a years wait.
I have managed to work out that my carbs/insulin ratio is about 10/1.

Does anyone have any tips or advice with MODY testing as it seems to be very difficult getting information on this.

 

[desidiabulum]

Hi. Most forms of MODY don't necessarily require insulin (though HNFI-beta probably does) -- I was told I would be on insulin within a year of my MODY diagnosis and 11 years later I'm still managing just on gliclazide. GAD, c-peptide and all the genetic testing can help to indicate MODY type, but negative results may just indicate that they haven't identified the relevant gene yet. Obviously you really need to discuss with a specialist, but the key issue is tackling symptoms -- there are a number of us who have given up on ever getting a secure diagnosis, but we know how to keep our levels under control. I find some GPs and diabetes doctors can't wait to get you onto insulin if you're slim and don't fit the usual T2 profile, but this needn't always be the case.

 

[DavidR88]

Hi. Most forms of MODY don't necessarily require insulin (though HNFI-beta probably does) -- I was told I would be on insulin within a year of my MODY diagnosis and 11 years later I'm still managing just on gliclazide. GAD, c-peptide and all the genetic testing can help to indicate MODY type, but negative results may just indicate that they haven't identified the relevant gene yet. Obviously you really need to discuss with a specialist, but the key issue is tackling symptoms -- there are a number of us who have given up on ever getting a secure diagnosis, but we know how to keep our levels under control. I find some GPs and diabetes doctors can't wait to get you onto insulin if you're slim and don't fit the usual T2 profile, but this needn't always be the case.

Thats really interesting! My diabetes doctor is fascinated with my case so hopefully I'll get some sort of an answer. Test result should be back next month

 

[Flora123]

Hi all, decided to sign up here and see what else I can learn.
I was diagnosed as LADA on 13/11/19 and supplied NovoRapid. This brought my BS down from 25mmol to around 12. Levemir helped bring it down to between 5-7.
apparently my bloodwork doesn't point towards type 1, LADA or type 2 so I have had bloods sent for MODY testing.
I suffer psoriasis and as such the koebner phenomenon which makes injecting difficult. I have been assessed for a pump (thinking omnipod or accu check insight) but this will be a years wait.
I have managed to work out that my carbs/insulin ratio is about 10/1.

Does anyone have any tips or advice with MODY testing as it seems to be very difficult getting information on this.

I’m in a similar position. Awaiting test results next month. There are a couple of good Facebook groups depending on which Mody you might be. There are a few people that have two types! Keep us posted.

 

[DavidR88]

I’m in a similar position. Awaiting test results next month. There are a couple of good Facebook groups depending on which Mody you might be. There are a few people that have two types! Keep us posted.

I did not know you could have multiple types of mody! I guess it just makes things that little bit more complicated