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Question about MODY

J

justadad

Well-Known Member
Messages
117
Hi all,

It took me a while to persuade myself to write this post. I searched the forum, and MODY very rarely appears in the threads, and when it appears, the users who had written about it seem to have been inactive for ages.
Cut the story short, my son was diagnosed as T1D in January. Discharged after a week with BG ranging 5-9. Went into remission rather quickly, a month after hospital, or maybe even earlier than that. Endo then changed insulin dosage to 2+2+2+2. After some frequent lows, we changed to 1+1+1+1. In the meantime we got the antibody lab results which showed no antibodies. Endo was quite enthusiastic about that, she explained that my boy might not be T1D, and suggested a DNA test. DNA samples sent to the lab a month ago, or so.
Anticipating the results now, I believe I will need some advice and some best practices from people who actually have been confirmed MODY. Having read a few posts/articles about MODY, I have created this idea in my head that MODY is the 'kinder' form of diabetes, and I can't wait for those results to come in!
So, any MODYs in here that I might contact for advice in future?

Cheers
 
justadad said:
So, no MODYs here, then?
Click to expand...

There are people with MODY here @justadad

There's a young woman but I can't recall her name. She's just one of a small number of people I've noticed. You'll need to keep checking back as I don't think she's a regular poster.
 
Hi, I did some reading on MODY a couple of years ago, out of interest. Diabetes type 2 is polygenetic and can involve several genes while MODY is monogenetic and due to a single gene. There are several MODY genes known and probably some yet to be discovered. The different MODY genes results in different blood sugar problems so you need to know which gene is involved.

This is a good site:
http://www.diabetesgenes.org/content/mody
 
I'm not sure if MODY is kinder. I think it depends on what type of MODY you have.

Do you or your son's mother have MODY then?
 
@emma90 has MODY, I believe but she wasn't the lady I was thinking of.
 
azure said:
I'm not sure if MODY is kinder. I think it depends on what type of MODY you have.

Do you or your son's mother have MODY then?
Click to expand...

Hi @azure and thanks for posting.
Not sure about the MODY diagnosis. I do not have diabetes, my mom has type 2, my son was diagnosed with type 1 at first, but his endo now thinks he might not be type 1 because of the negative antibody test. Decided to go with DNA tests, now can't wait for those results to come in. I've read that some types of MODY do not require insulin therapy, so that is what we are hoping for.

Cheers,
 
Yes, that's right about some types not needing insulin. Do let us know the outcome of the tests.

Good luck
 
@justadad
Hi there,
Good luck with the tests. Different kinds of MODY manifest differently, and there is also quite a lot of variability within categories of MODY. I'm MODY3 (HNF1A-mutation). If you son ends up positive for MODY, depending upon the type it may well have implications for diagnoses of others in your family including yourself. But best to await results.
I've posted previously about my own experiences thus far as a non-medicated MODY3 (thus far managing with diet and exercise). However I'm aware that others that have MODY3 require medication and sometimes insulin from a young age. I was diagnosed not too long ago at age 40.
Best,
Rodney
 
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Hi @Rodney from Canada,
I am Mody 3 and non medicated too, managing it with diet and exercice just like you do. I would be glad sharing tips and exchanging information with you ! (I guess I can't send you private messages yet as I am new on the forum).
Best,
 
Last edited:
Hi Mike! Great to hear from you. Happy to exchange notes. I've sent you a private message. It would be great if there were MODY3 thread/forum for folks like us to connect. So far its been challenging to find others with MODY 3 and your are the first one I've connected with who is also managing with diet and activity (for now).
More soon,
Cheers,
R
 
I'm MODY I take 2x xigduo a day 1 shot of levemir a day and 1 shot of dulaglutide a week
 
Currently awaiting Mody results- have been treated at T1 for many years but my pancreas sort of splutters intermittently drastically reducing insulin need to almost nothing for a few weeks.
 
Jdsounds said:
I'm MODY I take 2x xigduo a day 1 shot of levemir a day and 1 shot of dulaglutide a week
Click to expand...
Hello!
Do you know which MODY you are? There are many different types, although the most common one is MODY 3 (HNF1A-mutation).
Great to hear from you!
 
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