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Pregnant, MODY 2 and insulin treatment

Discussion in 'MODY' started by mutantgene, Apr 19, 2012.

  1. mutantgene

    mutantgene Approved members

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    Hello,

    I am new here, I just found the forum while doing a google search to try to find other pregnant MODY 2 women.

    I found none so far.

    I am 12 weeks pregnant and this baby will not have MODY 2 as it I have used a donor egg after repeated miscarriages (all before 12 weeks). I have one 17 year old daughter though my pregnancy with her was complicated and I almost lost her at 23 weeks.

    Anyway, my issue now is that I was put on insulin at 11 weeks pregant, last week. This has brought my numbers down to 4.9, 4.8, 3.9 and 3.8 at various occasions during the week - when I get to 4.9, I start to feel odd: heavy, weak-ish, a bit shaky, and sometimes very thirsty. Do any of you know if, when we have MODY 2, we experience the symptoms of a low at a higher reading than other diabetics?

    My midwife and doctor say I need to just be more stoic, that these numbers are ideal/normal and to protect the baby...any advice or input?

    My prenatal carers have not had any MODY 2 patients before, yet they said my numbers need to be the 'same normal' numbers as any other diabetic on insulin and if that makes me feel ill, than I just need to grin and bear it.

    Am I being a wimp, not stoic enough? Is it what I need to do to protect the baby?

    When pregnant with my 17 year old - whom I think has inherited the MODY 2 anyway - I was not put on insulin till 28 weeks and I only ONCE had a low during 10 weeks on insulin...this time I have felt odd/ill-ish several times on numbers below 5. Makes me wonder if my prenatal health care team really know how to handle the MODY 2.

    MG
     
  2. ChristineJ

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    Hello and welcome! My son has MODY2 (and may have another mutation as well), and he is involved in the MODY research being done at the Univ. of Chicago here in the US. One of the unique things about MODY2 is that the baseline "normal" blood glucose range runs about 30 to 40 mg/dl higher than for anyone else. The usual "normal" BG range is 70-100mg/dl. For someone with MODY2, with a higher range, the body's physiological response to hypoglycemia begins in the 90's or low 100's instead of the 60's. So no, you are not "being a wimp"!:)

    I have links to studies about hypoglycemia in MODY2, but I am not at home right now. I will post them for you later today.

    Christine
     
  3. sarahspins

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    Sometimes the symptoms of a hypo can come on just with a sudden drop in BG.. it's not always because you've hit a certain level.

    The other possibility, as suggested, is that your numbers were simply running much higher and your body isn't used to it... and if that is the case, you will get used to it, but it will take a little time.

    High BG presents a number of risks to your baby, including an increased risk of stillbirth, so it's important to manage your diabetes (doesn't matter what kind) as well as possible.
     
  4. mutantgene

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    Thanks to both of your replies.

    I have just fired off an email to Prof Hattersley's office as he's the one who tested and diagnosed me at Exeter University. (UK).

    A stillbirth is not something I want of course.

    My first post meant to say that in my pregnancy with my daughter, I didn't START insulin till I was 28 weeks (till 38 weeks when I had her). That was in New York and somehow I felt ill only once during that time.

    So, as this is happening daily now I wonder if I am not being treated right.

    I am glad to know that it is as I thought, that because we have a higher bs level which is normal for us, we also feel hypo at a higher level and I am not crazy or being 'just a wimp'.

    Still, it sounds like I might not have any way around it than to feel hypo for much of the next 6 months.

    MG.
     
  5. ChristineJ

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    Just to clarify what I was saying above, with MODY2 you are physiologically wired to run BG's in a range that's 30 to 40mg/dl higher. It's not just that you are used to running higher. The rest of the world is physiologically programmed for the counterregulatory response to hypoglycemia (release of epinephrine and subsequently glycogen from the liver) to begin when BG is approximately in the 60's. The body of a person with MODY2 is wired for that response to occur when BG is in the 90's to low 100's. So what would be a "normal" BG for everyone else is physiologically hypoglycemia for someone with MODY2.


    Christine
     
    Last edited: Apr 19, 2012
  6. mutantgene

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    Others?

    I know this is a forum about children with diabetes, and I am sorry for butting in here with an issue involving myself and my treatment during pregnancy and having MODY 2.

    But does anyone know of anyone - a woman who's got MODY2 and been treated with insulin? I would love to connect with someone/several others who have had issues with this.

    MG.
     
  7. ChristineJ

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    Last edited: Feb 22, 2013
  8. ChristineJ

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    Mutantgene,

    Not sure if you got it yet, but I sent you a PM...:)

    Christine
     
  9. mutantgene

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    Thanks for the links, Christine.
     
  10. RSpence

    RSpence New Member

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    Mody 2

    Hi,
    I am new here as well but have been pouring over as much research and forums as I can for MODY 2 for a couple of years.

    Myself and three of my children genetically tested positive for MODY 2 through research being done at The University of Chicago. I am also a nurse and working on my master's degree to become a Nurse Practitioner.

    Because you know that your baby will not have MODY (assuming that the father does not carry a copy) your treatment regimen seems appropriate. I was on insulin during my pregnancies as well and always felt badly when my blood sugar was brought to what is considered normal for a nondiabetic person. Thus, if my blood sugar was brought down to the 90's I felt very shaky because my system was used to being in the 130's to 150's. However, I did eventually adjust to feeling ok with the new lower base levels.

    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.

    Hope I have helped you and not further confused the issue. I have been studying MODY 2 for two years now. There are new things to be learned every day it seems. Good Luck!!
     
  11. mutantgene

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    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.
     
  12. ChristineJ

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    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
     
  13. mutantgene

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    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?
     
  14. ChristineJ

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    Ugh, so frustrating!:mad: 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
     
  15. mutantgene

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    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. :)
     
  16. ChristineJ

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    "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!:mad: 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!:D

    Christine
     
  17. mutantgene

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    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.

    :)
     
  18. cjajki

    cjajki New Member

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    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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