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Thread: Pregnant, MODY 2 and insulin treatment

  1. #11

    Default

    Thanks RSpence,

    It's nice to hear from another person who has experienced similar. I feel reassured that feeling badly when my sugar goes down to normal (non-diabetic) levels won't 'kill' me.

    My fiance - who is not the father of my teenage daughter - does not carry the gene, so that's not an issue, but thank you for the information.

  2. #12
    Join Date
    Dec 2010
    Location
    Massachusetts
    Posts
    302

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    Quote Originally Posted by RSpence View Post

    However, if the father of the baby carries the MODY gene and this is the same father from your previous pregnancies the baby may still inherit one copy of the MODY gene. This may explain why you have had multiple miscarriages using your own eggs naturally. If the baby inherits two copies of the MODY gene it can be lethal from my understanding.

    If the father carries the gene for MODY and there is a chance that the baby has inherited it you may not want to be on insulin. There is research showing that MODY 2 infants of MODY 2 mothers suffer intrauterine growth restriction if the mother's blood sugar is tightly controlled to within normal ranges. If you know for sure that the father does not have diabetes then being on insulin is ok and best for the baby.
    I just wanted to add to this. There are a few cases in the literature where infants inherited two copies of the MODY 2 mutation and it wasn't lethal. They did, however, have PND or Permanent Neonatal Diabetes and were insulin-dependent.

    The intrauterine growth restriction will also occur if the baby has the MODY 2 mutation but the mother does not.

    Christine
    DS 12 years old

    Initially mis-diagnosed as T2(10/10) and T1(12/10).
    Dx MODY2, (6/11) GCK mutation with 2 additional genetic variants on the TCF-1 gene sequence.
    Being tested by Kovler/Univ. of Chicago for additional mutation, atypical MODY2 presentation.


    Novolog insulin with meals




    "Kindness is within your power, even when fondness is not." ~~ Mark Twain

  3. #13

    Default Conflicting advice from doctors

    Hi again,

    I ended up writing to Professor Hattersley's office with my questions/problem, and I got a reply today from his colleague (another physician who works with him) that I should NOT be on insulin yet. I sent them all my glucose readings for the last week, my treatment protocol (insulin amounts) and explained I feel ill when I get to a 'normal' range, which was more or less daily.

    I had read in one paper where it said that insulin should not be started in a pregnant MODY 2 patient based on blood sugar levels alone, but that more important is to follow the growth of the baby from week 28 by ultrasound. I asked if this was still current thinking, and was informed that it is.

    So, I called up the specialist prenatal clinic I attend here in Sweden and the doc I have seen here, the one who said I was just not being stoic enough when I explained I feel terrible when my glucose goes to 4.9 and below. I was told that she has already consulted an endocrinologist here, to get advice on my case.

    Secondly, I don't understand why I am met with what feels like hostility when I ask to get referred to an endocrinologist so that I can ask my OWN questions DIRECTLY and find out why they are not going with the advice (which can be found online) of Prof Hattersley. He is a leading world expert, why wouldn't they follow his advice? Then, I was asked "so, you don't want to come to our clinic anymore?" as if by questioning, so that I can understand their decisions in my case on my care, I am committing some kind of crime. It think this is to do with egos more than anything else. They are not experienced in this, by their own admission......but I, the patient, am not allowed to ask questions or point things out (medical literature).

    Either the 'specialist' prenatal clinic where I go and where I am the first and only pregnant MODY2 woman is wrong, or Prof Hattersley is wrong...who should I go with/believe? (of course, I trust Prof Hattersley as he was my doc previously and he diagnosed me).

    I am so frustrated and stressed out finding myself in this space where I am now the 'difficult uncooperative patient' because I would like to ask questions and get some answers as to: why did they put me on insulin already? Did they, even having told me they have no other MODY 2 pregnant patients, even read or try to learn anything about current thinking/treatment on it? If they did, and they read what Prof Hattersley says, why are they doing the opposite?

  4. #14
    Join Date
    Dec 2010
    Location
    Massachusetts
    Posts
    302

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    Ugh, so frustrating! As uncomfortable as it may be to be the "difficult patient", you need to do what you feel is best for you and the baby. When it comes to trusting the experience of a world renowned MODY expert like Dr. Hattersley versus the admitted lack of experience and knowledge of this clinic, it really is no contest. You have a right to be treated as an equal member of the treatment team. In fact, they are working for you! If they won't accept and respect your wishes in terms of treatment, is there another clinic or even a GP (who could consult with Dr. Hattersley) that could take over your care? Hopefully this will get sorted out soon so you can start feeling better and your treatment will be most beneficial for the baby!

    Christine
    DS 12 years old

    Initially mis-diagnosed as T2(10/10) and T1(12/10).
    Dx MODY2, (6/11) GCK mutation with 2 additional genetic variants on the TCF-1 gene sequence.
    Being tested by Kovler/Univ. of Chicago for additional mutation, atypical MODY2 presentation.


    Novolog insulin with meals




    "Kindness is within your power, even when fondness is not." ~~ Mark Twain

  5. #15

    Default Frustration

    Totally agree, Christine.

    I just spoke with the doc here again, insisting I get to see an Endo. I told her I have been in touch with Dr. H's office and been advised that I should not be on insulin according to Dr H, until after 28 weeks depending on size of fetus.

    She told me that "we deal with diabetes here all the time at the clinic and your diabetes is no different than anyone's else's and needs to be treated as such. This guy in England obviously doesn't know about obstetrics because he's wrong"!

    She finally agreed after much arm twisting to give me a referral to an Endo, though made it clear she's already taken advice from them and that they are the experts.

    Besides that, I had an ultrasound today and all looks great. So that's the good news.

  6. #16
    Join Date
    Dec 2010
    Location
    Massachusetts
    Posts
    302

    Default

    Quote Originally Posted by mutantgene View Post
    Totally agree, Christine.

    I just spoke with the doc here again, insisting I get to see an Endo. I told her I have been in touch with Dr. H's office and been advised that I should not be on insulin according to Dr H, until after 28 weeks depending on size of fetus.

    She told me that "we deal with diabetes here all the time at the clinic and your diabetes is no different than anyone's else's and needs to be treated as such. This guy in England obviously doesn't know about obstetrics because he's wrong"!

    She finally agreed after much arm twisting to give me a referral to an Endo, though made it clear she's already taken advice from them and that they are the experts.

    Besides that, I had an ultrasound today and all looks great. So that's the good news.
    "This guy in England" doesn't need to know about obstetrics in general to know about the unique physiological processes involved with MODY 2, and how they will affect a pregnant mom and her baby! So frustrating when medical professionals let egos and "protocols" get in the way of providing treatment that's appropriate for a particular individual!

    I'm glad she eventually gave you the referral to the Endo. Hopefully they will be more open-minded and acknowledge Dr. Hattersley's recommendations, knowledge, and experience.

    That's very good news that all is well with the baby!

    Christine
    DS 12 years old

    Initially mis-diagnosed as T2(10/10) and T1(12/10).
    Dx MODY2, (6/11) GCK mutation with 2 additional genetic variants on the TCF-1 gene sequence.
    Being tested by Kovler/Univ. of Chicago for additional mutation, atypical MODY2 presentation.


    Novolog insulin with meals




    "Kindness is within your power, even when fondness is not." ~~ Mark Twain

  7. #17

    Default Spoke with Prof H in England

    Prof H called me yesterday and he was incredibly helpful and kind.

    After speaking with him, I have decided to stop the insulin as it won't make any difference and find a midwife. No point going to the 'specialist clinic'.

    He said if I was HIS pregnant MODY2 patient, I would not be on insulin until possibly the 3rd trimester, but probably not even then as their research has shown it usually makes no or minimal difference to the size of the baby and it is very, very difficult to bring fasting glucose levels down in a MODY2 patient to 'normal' levels without using huge amounts of insulin which would make the mother feel 'very ill indeed' for little or no difference to the baby.

    As far as birth defects go, which my doc tried to scare me with (if insulin is not used now), apparently that is hogwash with an HbA1c under 48. Mine is 41 and the doc should have been honest about that not being a risk rather than trying to scare me.

    So, I have no faith in my gyn/ob "diabetes specialist" obstetrician as she can't be bothered to learn something new (about MODY2) and has been dishonest with me. Plus she said that 'my guy in England' (prof H) obviously doesn't know anything about diabetes and obstetrics and I'm afraid I disagree, bigtime. I am going with him.

    So, thanks for all your replies and advice. This is how the story ends for now.


  8. Default

    Hi, I'm not sure you're set up to receive emails from this or if you check it, but I have MODY 2 and had my first in March 2012. They had me on insulin from the moment I knew I was pregnant. I did eventually get used to the lower numbers, but I'm happy I'm off the insulin now. I'd be happy to talk with you about my experience and hear yours. I am guessing you've had your little one already since you posted in April, and its now January.
    Just thought I'd post a reply,
    Thanks

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