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MODY and Miscarriages

Discussion in 'MODY' started by Lotus, Jan 20, 2012.

  1. Lotus

    Lotus New Member

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    Does anyone have any information about the link/causes of MODY and Miscarriages. I recently had my eleventh miscarriage. I have one child (they are in the process of testing her for mody) I am currently typed as a type 1. However, given my unusual medical history I was told by my doctor that more thank likely, I'm a rare case of lightening strking twice. In other words a type one that also is a MODY. Apparently, its rare but not unheard of, and there are other documented cases of individuals who are both a MODY and a type 1.

    One of the reasons I am posting here. Is because, when I was originally interviewed to be included in a study on MODY. one of the things that the researcher told me was that a lot of MODY women seem to report multiple miscarriages, although she didn't have much more information other than it just seems to be something women are reporting. I have a normal A1c it runs in the 5's and has been as low as 4.8 for some of the miscarriages. So high Blood sugar is not the issue. I have also seen specialists and no one has found a medical reason for my miscarriages. However, none of them are familiar with MODY. Anyone, else have any clues or ideas on where to gather more information? I'd really love another child. And it would be great, if I could figure out if there was something I could do to prevent another miscarriage.
     
  2. MomofSweetOne

    MomofSweetOne Approved members

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    I'm very sorry about your losses. This is probably asking the obvious, but I hope they've checked your thyroid function?
     
  3. emm142

    emm142 Approved members

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    Are you sure you actually have type 1? I mean, you can have antibodies and MODY without having type 1 diabetes. Just asking because an a1C of 4.8 sounds lower than the vast majority of people with type 1 could reasonably achieve (I've only ever heard of a1Cs that low in people following the Bernstein diet).
     
  4. Lotus

    Lotus New Member

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    Thanks and More Info

    In answer to the questions:

    My throid was checked as part of a miscarriage work up.Normal.

    What type am I? I'm honestly not sure. The 4.8 was achieved as part of the bernstein diet. It was hellish. And I personally found it dangerous to be that low all the time, and I didn't really have much of a quality of life. I only did it to absolutley rule out that my A1c had anything to do with my pregnancy losses. I ate the same few meals, at the exact same time of day, etc for months. Not very practicle.

    I was diagnosed as a type 1 at 25 because. I was thin, had large ketones, c-peptide was .5 (now is zero) and I tested positive for 4 insulin auto-anibodies. All seemingly charachteristic of an open and shut type 1. Except for this. My diabetes symptoms appeared in child hood. I'd have several periods of being extremely thirsty, needing to use the bathroom, and using a relatives urine test strips, ketons and sugar were spilling into my urine. This was age 10. However, while my doctors checked me for type 1 diabetes several times between 10 and 25. They always concluded I wasn't a diabetic. Normal a1c and normal glucose tolerence tests. Although they were borderline. Also of interest. I checked my blood sugar on relatives meters and was over 200 many times. I just would always fluctuate between normal blood sugars and then high. So by the time I got to a doctors office several weeks after noticing a high blood sugar I would be fine in their office. And as they said. I was too thin and young to be a type 2. And type 1's don't have diabetes that comes and goes. When I was finally diagonsed at 25. I had nueropathy. I thought that was clear proof I'd been diabetic for years. However, in 2004. MODY wasn't something that was even discussed. So I was told it wasn't possible that I'd been diabetic for years and not known it. Since type 1 doesn't work like that. My daughter developed symptoms at 2. She tested postive for one autoinsulin antibody. And i was told she was an early onset type 1 and would need insulin soon. Guess what. 2 years later. No insulin. Her blood sugar fluctuates. One week she will be over 300 several times a day. But, because her blood sugar always returns to normal by 4 hours on its own. My doctors will not prescribe insulin. In fact she often gets very low 30s, to 40s on her own. And then she will bounce back to completly normal blood sugars. Such as this month. She seems totally normal. We are being tested at university of chicago. So far they haven't found a mutation and they have been working on our samples for over a year. They told me i was either a type 1 and a mody. Or a mody with antibodies. However, i was warned that having four sets of antibodies made it very unlikely I was a mody alone. However, the researcher I spoke to. Said many new types of mody are being discovered. And she doubted I would fall into one of the more common forms of MODY. That I might never now which type I am, or that at the very least, I would be waiting for years, until more samples like mine were grouped together and typed. Any thoughts? I'd love to hear more about which types of MODy you can have and still have antibodies? My daughters case particularly frustrates me. When I tell doctors she's diabetic. The first thing they ask is which type. When i say we don't know, they look at me like I'm an idiot. When I say her diabetes seems to come and go. They really look at me like I'm nuts.
     
  5. TheFormerLantusFiend

    TheFormerLantusFiend Approved members

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    I am aware of at least a couple of cases of a genetic cause for diabetes being present and the person having antibodies- I think the theory is that the high blood sugar can trigger the antibody response.
    Let me see if I can find the paper.
    Although, it is perfectly possible that it was autoimmune type 1 diabetes all the time - I am aware of multiple cases of people who had high blood sugars with antibodies, after brief treatment had normal blood sugar for years, then redeveloped diabetes. That is more common in various other forms though- it's downright typical in various forms of neonatal diabetes.

    Have you been tested for the various vitamin deficiences and for hormonal problems? Have you or any of your miscarriages been tested for chromosomal abnormalities (ie translocation)?
     
  6. Lotus

    Lotus New Member

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    no chromosone issues

    I've done just about every test possilbe. And consulted with experts in infertility and pregnancy loss, in several states. Nothing. Thats the frustrating thing. No abnormal chromosomes. No vitamin problems. No thyroid issues. No clotting factors. Nothing.

    In fact other than the fact that I'm diabetic. They can't find anything wrong with me. And the doctors seem suprised that my blood work always comes back so great. They often remark that I'm healthier than there non diabetic patients. And they can't find anything wrong. That's why I was starting to wonder about the link to MODY and pregnancy loss. Although, other than being told by other MODY women and a doctor that this is a problem. I haven't read much online, or found much written about MODY and pregnancy loss.
     
  7. MomofSweetOne

    MomofSweetOne Approved members

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    I assume they've done the test for the autoimmune disease that causes clotting in the placenta and fetal death? (I can't remember the name of it.) I know they typically don't test until a woman has had multiple miscarriages, but I've already told my daughter that if she miscarries even once, to insist the test be done since she already have 2 autoimmune diseases.
     
  8. mom2modykids

    mom2modykids New Member

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    So sorry for your losses

    A little about me first:
    I found this site 5 years ago when I first found both of my children to have elevated BG's. Both of my children were about 130ish in the morning and 180ish after meals. (its gone up since then) It always goes down on its own. After fighting doctors and insurance they were tested and found to be "maybe type 1 and found early". Kids ages were 5 and 3

    I found a wonderful Endo who said it was probably MODY since they both had it and they were both underweight so it was unlikely to be type 2. My insurance wouldn't cover testing so we just closely watched them. And tried diet restrictions. Sure their bgs went down but so did their weight they were already thin.

    Last year we moved switched jobs, insurance, and our endo. He put them on Insulin right away and it has been working they are now in normal range, and growing...yeah. They tested positive for MODY 2. And strangely my son has an added Mody mutation that my Daughter doesn't have.

    I saw your question and as I just found out I am pregnant I was concerned about my daughter as she gets older. I have a clotting factor and it would be just her luck to get MODY from Dad and Factor V Leiden from me.

    I have been a lurker here for 5 years and couldn't remember my login so had to create a new one. :)

    Here is what I found.

    In summory if both parents have the same MODY mutation it can cause more than just MODY in the child.

    From http://en.wikipedia.org/wiki/Maturity_onset_diabetes_of_the_young

    While looking for your question I found that if the fetus has MODY and the mother doesn't it can cause low birth weight. Both of my children were small. I know when I researched this last a couple of years ago I didn't find any of this information

    My kids have an apt in Feb with their Endo. I have many questions but I'm going to add these to the list. I don't trust wikipedia as the only source I found. I hope this helps. I had never heard of MODY causing miscarrage. I think the doctors are still finding out information about MODY.

    Good luck
    Nicole
     
  9. ChristineJ

    ChristineJ Approved members

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    In the research I've found, I haven't seen anything about MODY and miscarriages but there certainly may be a connection that's yet to be discovered. There is still a LOT that researchers don't know about MODY.

    The issue with low birthweight and MODY that you cite is specifically in reference to MODY 2, not the other MODYs. My son has MODY 2 and he was small at birth as well. He also had failure to thrive for the first three months, which I feel may be connected to the MODY as well. He has a heterozygous mutation, but a homozygous mutation is known to cause neonatal diabetes with failure to thrive.

    Nicole, I'm glad to hear your children are doing well on the insulin. A lot of "current" sources of information on MODY 2 state that diet and exercise are "the only treatment needed", but I'm finding other parents of children with MODY 2 that are being treated either with insulin or with oral meds because "diet and exercise" just wasn't enough. MODY 2 is not as "mild" as some sources claim. My son is using insulin with meals, and his BG's are much better. Equally as important, he FEELS much better!

    I'm glad to see the two of you posting here. Sometimes the MODY forum doesn't see too much traffic. There is a MODY group on Facebook too, if either of you are interested. We'd love to see you there!:)

    Christine
     
    Last edited: Jan 26, 2012
  10. JaxDad

    JaxDad Approved members

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    So sorry for your losses. My wife and I suffered through 8, so unfortunately I know how you are suffering.

    In our case it turned out to be a condition where her blood would be just slightly too thick that not enough would make it through the cord to nourish the baby.

    I'm sorry but I forget exactly the name of the condition, I think it had to do with "S proteins". I also believe that they doctors said it was correlated to people with autoimmune disorder family histories. Heparin ended up being the solution.

    I have no idea but every hope that this will help. Prayers.
    Jim
     
    Last edited: Jan 26, 2012
  11. smcnair

    smcnair Approved members

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    I found the info http://diabetes.niddk.nih.gov/dm/pubs/mody/ extremely helpful when awaiting news of whether or not I had a form of monogenic diabetes, and which form my son had. I had my theories for what type his was (based on some other factors), and thought he had a form of MODY, but we both had PND. Regardless, there isn't much information online that I could find, and there is an appendix at the end of this article which lists some of the common forms of monogenic diabetes - of which MODY would be a type. I guess one of the reasons I thought my son had a form of MODY was because the form of PND we have isn't included in the appendix.
     
  12. thebestnest5

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    I am truly sorry.
    Leiden Factor V can be confirmed with a blood test. ( I think)
     
  13. mom2modykids

    mom2modykids New Member

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    My Factor V leiden was found with a blood test after a DVT and PE. I know there are lots of different clotting factors. I'm now on daily shots of blood thinners just durring my pregnancy. My kids were glad that I had to have shots too! Me not so much.

    Christine, I would love to join the facebook group. What is it? One reason I just read and dont post is there doesn't seem to be to many MODY people.

    Nicole
     
  14. jilmarie

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    Antiphospholipid antibodies or lupus anticoagulant? I would assume that the OP has been tested as part of her infertility work up too.

    I do think the concept of homozygous MODY is interesting. I couldn't find any literature on the topic, though.
     
  15. ChristineJ

    ChristineJ Approved members

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    Nicole,

    The MODY group on FB is a closed discussion group, so only members can see the threads. Some adults with MODY, some parents of MODY kids, some questioning if they or their kids have MODY. If you go on Facebook and search for MODY, we'll come up under Groups. :)

    Christine
     
  16. mutantgene

    mutantgene Approved members

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    Miscarriages and Mody 2

    Hi Lotus,

    I was searching Google for any Mody 2 forums because I want to find other pregnant Mody 2 women on insulin. I happened to catch your post in google results and because there are so few of us (know cases and little research) I felt I should reply because I have had 3 miscarriages over a space of 9 years. Inbetween I just did not get pregnant despite not using protection. I have had all the tests and they found no explanation for my infertility, so perhaps it is Mody 2 related.

    Did you take part in the research at Exeter University with Dr. Hattersley? (I did a few years ago after my last miscarriage).

    Currently I am pregnant, but I resorted to using a donor egg in the end also as I am not in my early 40s and IVF using my own eggs had a very, very slim chance of working. I am 12 weeks pregnant and all seems to be going well. I started insulin a week ago but I feel shaky and odd already as I get to 4.9 or 4.8 and have had a couple of 3.8 that I felt terrible during....midwife and doc says that I need to be just more stoic because those are normal readings and what is good for the baby...... I can't seem to find any answers anywhere as to whether this is right nor not. I have a 17 year old girl and with her I was also on insulin and it was MY egg that time so I suspect she has MODY 2 also, BUT I only had one bloodsugar low during all that time on insuling..now I live in a different country and they say they haven't had another MODY 2 pregnant patient but that I need no different treatment than any other pregnant diabetic...

    However, I wonder if us MODY2's don't get hypo on higher numbers than others and therefore feel odd already at 4.9 and below. Still they tell me I have to put up as my baby will not have MODY 2 as it is a donor egg and that my readings 'are ideal'.... Anyway, can't find anyone else on internet with these issues...

    But, I saw yours and wanted to just say "maybe there is a connection, nobody has been able to tell me, but I had 3 miscarriages in a row"....

    Good luck to you!

    Best
    mutantgene
     
  17. RSpence

    RSpence New Member

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    MODY 2 and pregnancy

    Hi, I have MODY 2 as do three of my kids. I am also a nurse working on my Nurse Practitioner degree.

    Is it possible that the father of the baby also carries a MODY mutation? I have read that inheriting two copies of the gene can be lethal for the infant. Also, if the infant has MODY (even just one copy of the gene) tight maternal glycemic control can lead to growth restriction of the fetus.

    So, if there is a possibility that you have passed your copy to the baby you may ask your doctor if your numbers should be a little higher. Better yet, ask a young endocrinologist or ask your ob/gyn to confer with a young endocrinologist. The younger the endo. the more likely they are to be current with this form of diabetes and how to treat it.

    Good luck
     

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