good info for repeat miscarriers

(11 posts)(6 voices)
  1. hello,

    i just wanted to add my two cents. i am a repeat mc'er, with 8 losses under my belt. most have been between 5-8 weeks, but have also had 2 later losses, of a singlteton at 10 wks and identical twins at 11 wks. i had done every standard prelimnary test out there: chromosomal (on me, dh, and various d&c tissue), hsg, mthfr, etc., etc. all they could find was that i was mthfr compound hetero, which should not have caused the issue. however, i was put on 40mg of lovenox and daily baby asiprin, which did little, as 5 losses were post that.

    i finally went into a rheumotologist while actively mc'ing and did a full blood work up. interestingly, this work up looked different than the ones when i was not pg or still in the healthy throes of pg. it showed more advanced clotting and a "markedly high" autoimmune response of no known scientfic qunatity. for my next ivf i upped to 80mg of lovenox, and also added low dose prednisone (steroids), the latter beginning 2 weeks before the ivf. the latter is often associated with natrual killer cells, which many us scientists believe is total bunk. however, with 8 losses under my belt, the rhumotologist deferred to me whether i started the steroids. there are risks, but i am now 11wks pg with a baby that seems on track.

    i also just received a ton of literature on celiacs/gluten intolerance that is just coming out. they are discovering that a much larger % of the pop has the disease, but it is asymptomatic, so therefore not diagnosed. it has been highly linked to infertility, repeat miscarriage, and iugr babies. it is also linked to mthfr, pcos, and autoimmune repsonses. i am not the one to jump on medical bandwagons, but it is quite compelling. a doc at columbia is sort of leading the charge, but prelimnary studies all over the world are being done in regards to asymptomatic celiacs. i have just gone gluten free and will stay so for the remainder of the pg.

    so, my two cents are, if you are unknown, those are two potential avenues to examine -- autoimmune/natural killer cells and celiacs. good luck.

  2. Hi aaltaai,

    I am so sorry for all of your losses. It sounds like you have such amazing strength. I really appreciate you sharing the research you have done. I have recently had a third miscarriage and I am trying to get my hands on as much information as possible. Are there specific immune and clotting tests I should be asking for? Also, was your rhem. in NY?

    Thanks again for sharing this important information. It is really helpful to those of us searching for answers.

    Trina

  3. aaltaai-

    Thanks for sharing. I'm sorry about all that you had to go through, and I wish you a smooth, healthy and happy 9 months.

    To add to Trina's question, do you recall what your rhumatologist tested that the other immune panels didn't test? What was the "markedly high" autoimmune response of no known scientific quantity?

    Thanks,
    New

  4. the rheum was at hss, accross the street from cornell. lisa sammaritano (sp). she was great. my intial visit took 3 mos out to schedule, but she got me in with 2 days notice once i was actively mc'ing.

    not sure of all of the tests and names. too many to remember, all negative. would need to go back to paper work. grunenbaum, the head of cornell's high risk group, tested me for the standard mc panel after we had experienced 2 mc and the full-term birth of a 4lb12oz child. it is 10 or 11 factors -- homocysteines, lieden factor V (sp?), etc,. he was the one to diagnose compound hetero mthfr, but dismissed the ned for lov. based on normal levels for all else.

    dr. sammaritano did standard autimmune testing, with a focus on pg related autoimune conditions. lupus, lymphoma, etc, etc. the ana response was 3+ on a scale of 4+, but when i look on-line most scales are ratio'ed, so not sure what that means. however, she said the trigger to cause this high level was nothing known to science -- her belief was that i have something latent that will emegre later or that i have something yet to be discovered/defiined by science.

    i do now wonder about the celiacs stuff, as i doubt she checked that. if you want to check out more about that, you can google celiacs with about any inferitlity related term after it and find many euro articles. the us guru is peter green at columbia.

    good luck!

  5. thanks a million!

  6. aaltaai

    Thank you so much for this very helpful info. I just made an appointment with the doctor b/c I am currently miscarrying. Can you tell me how much her testing cost? She does not take my insurance and it is $550 just to see her! I am wondering how much the testing will cost.

    Thanks so much!

  7. Sorry to barge in but I wanted to let you all know about something I just found out I have. It's called anticardiolipin antibodies. It means that I do not have enough oxygen in my blood to transfer to the baby. I had a m/c at 5.5 weeks in September and just lost my twins at 5.5 weeks this month. My dr says it's treated with a blood thinner and aspirin.

  8. gianna, she accepted oxford when i saw her (in march), so do not know the cost. however, if hss or the labs she uses takes your insurance, you might be able to get that covered?

    apologies.

  9. Just want to post an update. I visited Dr. S. I paid the enormous consult fee but luckily the testing was covered by insurance. The only thing she turned up was some odd thing that can cause dry eyes and dry mouth MAYBE when I'm older.

    Glad I did the testing for peace of mind though. Thanks for the info L.

  10. aaltaai - thank you for posting this. I am fascinated by everything you posted and feel that I have similar issues. I also experienced 8 losses before succeeding via gestational surrogate. Most of mine were early, and naturally conceived (like yours, it seems), but one was a second tri loss of a chr. normal male fetus.

    IN any event, I got tested by a rheumatologist after the fact for RA specifically, and altough I don't have RA, I do seem to have a very high rheumatoid factor level, which has been explained to me at this point to just be a marker for an underlying autoimmune issue.

    I have another consult with a 2nd rheum on Monday, but I wish I ad seen this post earlier and I owuld have just tried to meet with the one you mentioned, since she seems to have some experience with the link with RPL. If my current rheum doesn't necessarily come through, I will def. meet with the doctor you mentioned.

    Quick question for you- was it just prednisone that you took for your current pg to be successful? Were you tested for any of the more contraversial immune issues? (NK cells, UNKs, etc.)

    Please let me know when you get a chance, and a heartfelt congrats on your current pregnancy!

  11. U5,

    I was on 15mg of prednisone from 3 wks prior to ivf through end of first trimester, 10mg during 2nd trimester, and 5 ms for the first 1/2 of 3rd trimester. they just pulled me off altogether, as my ANA went from 3+ tpo negative.

    I have been on 80mg of Lovenox since CD1, other than the 3 days around ET. They wanted to up this in the first trimester, as I was still high for clotting, but I declined. It just sounded like too much. I am waiting for my latest throm panel to return to determine what they will do the last few wks of the pg.

    I am also on baby aspirin, prenatals, and extra folic acid, B and D.

    In other words, I am sort of a walking pharmacy.

    So wild, though, b/c aside from high ANA normalizing, my white blood cell count became much better. I was at 24 for 2 seperate draws (which is absurd, even with the steroids and pg), then 15 in Jan, and now not sure, but as it was not mentioned, I am assuming even better.

    So I guess the question remains whether my early pg's send my body out of whack, the gluten removal has made a difference, or there are still udnerlying issues that will ebb and flow.

    As far as NK, etc, she did not test, as she thought it was bunk. They can be totally variable thoughout one's day. But, steroids are the treatment for them regardless, so it did not matter.

    Best of luck!

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