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what are my chances?

Discussion in 'MODY' started by lizabetic, Jul 17, 2011.

  1. lizabetic

    lizabetic New Member

    Jul 13, 2011
    What are my chances of having MODY?
    My GP seems to think that it is possible considering i'm such an odd case, my Endo believes i'm slow-onset-type-1.

    Firstly...I was diagnosed type 1 at age 16 (am now 19) and on minimal insulin for 6 months, though not continuously - sometimes i'd take it others I wouldn't. At this time however I was eating much more than I needed to just to keep my sugars up, we weren't told much about it and it is now clear too me that the ~20units per day (long lasting & fast acting) was too much!

    Now its been 3 years since diagnosis and i'm not on insulin or any medication, I eat a low carb diet mainly and have levels between 5 - 12mmol sometimes to 19mmol or even 22mmol when i'm sick! But never more, there does seem to be a clear threshold if you like..

    I am negative for Type 1 antibodies.
    My HbA1c is 5.6%
    I have a normal c-peptide
    No ketones ever.
    But apparently only 75% of pancreas is working.
    My problem is spiking after meals.
    I also hypo, which is incredibly odd but i'm not sure its neccesarily related since me & my mother have always done so and we are also coeliac and i've read similar things.
    Oh and my mum has gestational diabetes with me.

    It seems a bit odd that I would be slow-onset-type-1 since I was diagnosed at 16, nor do I have antibodies. Also my readings never change, my fasting level has never began to creep up in these 3 years.

    Also there are other factors that possibly point to MODY, first my grandma is 'borderline diabetic', I think that maybe my dad could be but its not as obvious especially as his lifestyle would accomodate nicely for that!

    Then theres things with me... i've always had bad teeth, neither of my parents do so it seems a bit odd. I know now that this is probably since there is excess sugar in my saliva suggesting that it could have been there longer than I knew about. Also from around 12 years old I suffered severe moodswings and was just generally horrible a lot, it kind of makes sense that this could be D-related because now controlled well i'm much much better and I remember 'feeling' my mood dropping which could have actually been feeling my blood sugars lowering!!

    My endo says MODY is extremely rare and so seems unlikely to me, I get the impression he is skeptical about the idea of it full stop. My theory is that perhaps I was ill with something during when I was diagnosed but that wasn't recognised and it might have caused my pancreas to die off a little and the higher readings. But who knows what? Now theres no progression and I cope well on a reasonable diet which really isn't that strict - I could probably do even better!

    Hhm, bit of a long post. I'm just tired of trying to find some answers and all :(
  2. ChristineJ

    ChristineJ Approved members

    Dec 25, 2010

    From the reading I've done on the various types of MODY, it sounds very possible that that's what you have. It is possible to be the first in a family to have the genetic mutation (someone has to be the first!). It's also possible with some types of MODY to have it go undetected for a number of generations. With a grandma that's "borderline" and a mother that had gestational diabetes, it certainly sounds like there are some type of glucose metabolism issues in the family.

    Here in the US the leading MODY experts are at the Kovler Diabetes Center in Chicago under the direction of Dr. Louis Philipson. Their website is www.monogenicdiabetes.org . In the UK, the leading expert is Dr. Andrew Hattersley at Exeter. The website is www.diabetesgenes.org . I would encourage you to check out these websites and perhaps contact Dr. Hattersley to inquire about testing for MODY.

    Best of luck in finding your answers, and keep us posted!:)

  3. emm142

    emm142 Approved members

    Sep 7, 2008
    It certainly doesn't sound like you have type 1. Seems like getting tested for MODY would be a good idea.

    Are they sure you don't have type 2? That can be partly genetic as well, but would be pretty unusual in a 16 year old, and is very improbable if your weight is normal.
  4. TheFormerLantusFiend

    TheFormerLantusFiend Approved members

    Sep 10, 2006
    MODY is not that rare. In children diagnosed with diabetes in Germany, MODY is responsible for about 1 case in 40. If you figure that about thirty out of the forty are antibody positive, then it's 1 in 10 antibody negative kids.

    I think that it sounds worth testing for.
  5. lizabetic

    lizabetic New Member

    Jul 13, 2011
    Thanks so much for your positive replies! I have had bad experiences before with people telling me its probably just type 2 and that their parents weren't overweight etc and still had it - when infact they could have been something else but technology and whatnot just wern't as good...

    My endo is pretty certain its not type 2, I do believe I may have got checked for insulin resistance too which were negative. I'm not overweight or unhealthy at all! If anything being on insulin to begin with made me gain weight which I have since lost..

    Thanks for the websites too, I have visited diabetesgenes.org many times! It has the best info I find :)

    Thanks again.
  6. Gemmaleanne

    Gemmaleanne New Member

    Dec 8, 2011
    Hi I was just wondering if yiu had had any more joy on this?,my daughter may be in similar situation x

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