MODY advice, please

[kitty_cat_1975]

Hi All. Wondering if the community can help. I was diagnosed at T1 16 years ago, at the age of 26, and put on insulin straight away. I have never been particularly well controlled (my mum says non compliant) except during my 2 pregnancies. I have 'only' had one DKA since diagnosis. I am able to function with quite seriously high levels.
I went to a new gp last Monday to inquire about getting the libre sensor on prescription as when I trialled it, I was actually testing relatively regularly. The new gp had no knowledge of the sensor and def didn't know if it was available to me. However, she said she thought I was MODY and did I fancy trying an experiment?! She prescribed Glimepiride, told me to test 4 times a day, to carry on with my usual insulin regime, cut out all sugar and to see her in a weeks time (I have an appt at 0940 tomorrow) I have been thrown into a complete spin by this; I have eaten appallingly, barely tested, missed insulin doses and feel utterly wretched. Can anyone give me advice about MODY? How is it the same as T1? How is it different? Can I get my children tested? (There's a 50% chance I've passed this to them) Can I be definitively tested? So many questions, worries... Am freaking out
Sorry for the long message. Any advice, suggestions etc would be appreciated, but please no judgement.
Many thanks in anticipation. Cat X

 

[Safi]

Hi @kitty_cat_1975 & welcome to the forum

I have no knowledge to share re MODY I'm afraid so I'll just 'bump' your post back to the top in the hopes someone who does will see it.

 

[Boo1979]

I am diagnosed T2 but Mody has been mentioned by at least one medic(although never tested) due to the length of time a sulfonylurea has worked - I personally think the aggressive management strategies Ive used are a big factor but who knows. I think the medication youve been given is anothr of the sulfonylureas
Anyway when Mody was first postulated, I found this which I found interesting and it might answer some of your questions
http://care.diabetesjournals.org/content/34/8/1878

 

[desidiabulum]

Hi All. Wondering if the community can help. I was diagnosed at T1 16 years ago, at the age of 26, and put on insulin straight away. I have never been particularly well controlled (my mum says non compliant) except during my 2 pregnancies. I have 'only' had one DKA since diagnosis. I am able to function with quite seriously high levels.
I went to a new gp last Monday to inquire about getting the libre sensor on prescription as when I trialled it, I was actually testing relatively regularly. The new gp had no knowledge of the sensor and def didn't know if it was available to me. However, she said she thought I was MODY and did I fancy trying an experiment?! She prescribed Glimepiride, told me to test 4 times a day, to carry on with my usual insulin regime, cut out all sugar and to see her in a weeks time (I have an appt at 0940 tomorrow) I have been thrown into a complete spin by this; I have eaten appallingly, barely tested, missed insulin doses and feel utterly wretched. Can anyone give me advice about MODY? How is it the same as T1? How is it different? Can I get my children tested? (There's a 50% chance I've passed this to them) Can I be definitively tested? So many questions, worries... Am freaking out
Sorry for the long message. Any advice, suggestions etc would be appreciated, but please no judgement.
Many thanks in anticipation. Cat X

Did the GP explain why they thought you were MODY? I would have thought the usual procedure would be to have GAD and c-peptide tests, and perhaps even genetic tests before such a diagnosis. There are different types of MODY, but in many cases it will respond well to even mild doses of sulfonylureas with no need for insulin. So if it truly is MODY that could be good news -- but clearly this needs to be handled more carefully so that it doesn't disrupt your monitoring before you have a proper diagnosis. When you meet the GP I would suggest asking for a full explanation of why MODY is being suggested and precisely how you are going to be tested for it. Good luck!