advertisement

Who should be tested for MODY?

Discussion in 'MODY' started by emm142, Apr 21, 2012.

  1. emm142

    emm142 Approved members

    Joined:
    Sep 7, 2008
    Messages:
    6,883
    Just interested, really. :eek: Almost 100% certain I don't have MODY since I think I'm antibody positive and also have other autoimmune stuff, but for those of you who do have MODY (or your children) why did you/they get tested?

    I understand that there are several different presentations of MODY, but are they different enough from type 1 that you would be tested simply based on things like how much insulin you need or your BG levels? Or is testing done on the basis of a family history or a lack of antibodies at diagnosis?
     
  2. ChristineJ

    ChristineJ Approved members

    Joined:
    Dec 25, 2010
    Messages:
    303
    In the reading and research that I've done since my son's MODY dx, some of the things I've found that can raise the question of Monogenic Diabetes are:

    1. Antibody negative diabetes

    2. Use of smaller than typical insulin doses, even several years after diagnosis

    3. Development of Type 2-like diabetes at a younger age (many sources say less than 25 years old)

    4. Strong family history of diabetes going back several generations

    5. Diabetes that doesn't fit the "typical" pattern for either T1 or T2, or that doesn't respond as expected to "typical" treatments

    6. Diabetes along with kidney issues, developmental delays, heart defects, etc.

    I'm sure there may be other factors also, but these are the ones that come to mind right now. Even though he's positive for MODY2, my son tested positive for a low level of T1 antibodies. So obviously none of this is a hard-and-fast rule. Even though someone may have a genetic mutation, the rest of their genetic makeup plays a role as well, as does environment, etc. I think the biggest factor to raise the MODY question is that something about the diabetes doesn't quite fit a "typical" pattern.

    HTH!:)

    Christine
     
  3. ChristineJ

    ChristineJ Approved members

    Joined:
    Dec 25, 2010
    Messages:
    303
    This is a great article, written by two of the researchers at the Kovler Center/Univ. of Chicago. It discusses MODY testing as well as specifics about the most common forms of MODY. :)

    http://www.medscape.com/viewarticle/750031

    Christine
     
  4. emm142

    emm142 Approved members

    Joined:
    Sep 7, 2008
    Messages:
    6,883
    Really interesting stuff - thanks! :) Like I said, 99% sure I have type 1 because when I was diagnosed they said "you seem like a textbook case of type 1, but we're just running more tests to confirm" and then they came back and said that it was type 1. I think I will ask at my next appt whether they were antibody, c-peptide or what.. would be interesting to know.

    But it seems like there are fairly often posters here whose children are antibody negative or who have a large family history. I wonder whether as more is learned about MODY they will test for it more frequently.
     
  5. ChristineJ

    ChristineJ Approved members

    Joined:
    Dec 25, 2010
    Messages:
    303
    You're welcome! There's a definite lack of awareness about Monogenic Diabetes, even among those in the medical professions. Many medical professionals have never even heard of Monogenic Diabetes, and those that have often don't have an adequate understanding about appropriate diagnosis and treatment. Hopefully as time goes by, and more information is gained by researchers, that will change.

    I too have noticed that there are a number of posters that have children that are antibody negative, use lower than expected doses of insulin years after diagnosis, etc. I'm trying not to always see zebras instead of horses, LOL, but it makes me wonder...:)

    Christine
     
  6. Lisa1001

    Lisa1001 Approved members

    Joined:
    Sep 30, 2010
    Messages:
    50
    My boys are being tested because they are antibody negative, use very low amounts of insulin, don't have dramatic BS changes (highs or lows), and generally don't respond as most "normal" T1's do. Also, even their dx's were different than most. The first was caught only because of another health problem, and the 2nd simply because of the first dx. There is no known family history, but my husband's family history, and even some of mine, is kind of spotty with older generations.
     
  7. nzmonty

    nzmonty New Member

    Joined:
    Nov 14, 2012
    Messages:
    1
    Mody

    Very interesting stuff !

    My 10 year old son was diagnosed with type 1 diabetes 2 years ago. This was picked up during a regular blood test when a teacher commented he appeared to tired during the day in class.

    He has recently been tested for Mody as a new doctor felt he met some of the symptoms. eg

    1. Antibody negative diabetes - yes

    2. Use of smaller than typical insulin doses, even several years after diagnosis - He has only had very small doses of insulin over the last two years
    with little changes required,HBAC1 6.3. -6.7 ,very good metabolic control, no major highs or lows



    3. Strong family history of diabetes going back several generations - Mother and grandfather both type 2 diabetic, mother passed away suddenly when he was 5 months old age 35

    We are awaiting results from the UK and hope to receive them in January 2013 - will keep you posted
     
  8. ChristineJ

    ChristineJ Approved members

    Joined:
    Dec 25, 2010
    Messages:
    303
    Hi, and welcome! Yes, please keep us posted. It'll be great to hear what you find out! :)

    Christine
     

Share This Page

advertisement

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice