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Ruth41 & Lauren2005 & any other homo MTHFR

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  1. #1
    gandalf
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    Ruth41 & Lauren2005 & any other homo MTHFR

    Ladies, I posted about recurring miscarriages today and that I just met with my RE yesterday and we went over the blood testing that she did and she happened to mention that I was homozygous for MTHFR mutation but that my homocystein levels were not high, so nothing to worry about. After I got the post to look at the immune boards and was reading about MTHFR I am totally freaked out. What should be my next step? I emailed the practice that Dr. Beers worked at asking for a consult on my situation. I also requested a copy of my records so that I could see exactly what tests were done and if there are any I still may need. What else would you suggest? Should I make an appointment with a hematologist? A genetic counselor? or a perinatologist? I am hoping that after I talk to someone at Dr. Beer's office I can convince my current RE of changing to that protocol. I love my RE, I have been to a lot of gyns, and another RE who caused a bad infection and landed me in the hospital for 4 weeks and then IV antibiotics at home for 4 weeks.....all of that led to me going to IVF becuase of pelvic adhesions from the infection.......anyway as you can guess after all of that I already have a trust issue with docs, and I hope my current RE who has gotten me pg 2 times with IVF will be willing to hear my concerns and adapt them.

    Also is there any negative side effects with taking Lovenex???? I mean what are the concerns????

    I am not sure if I have an A mutation or the C mutation.....I just know that I am homo (which is 2) but don't know which......I will know when I get my test results.

    Thanks again Lauren for passing me onto these boards, I would never have known anything and now I feel like I will need to get a lot more answers before starting my 3rd cycle.
    Michelle


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  3. #2
    Lauren2005
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    Hi Michelle,

    Sorry, I just saw this post this morning. MTHFR mutations aren't uncommon, but were only discovered recently and the appropriate treatment is just now being understood on a large scale. Homocysteine levels are irrelevant for IF and m/c. They matter for heart attack, stroke, etc. But ignore them for the purposes of ttc. Dr. Beer's protocol for MTHFR patients (he dealt with hundreds if not thousands of them before he passed away in May) was:

    * One Folgard tablet per mutation each day for the rest of your life (this is simply high-dose folic acid and other B-vitamins, but it needs an rx. Some women use over the counter vitamins instead and other women substitute FolaPro).

    * One baby aspirin daily for the rest of your life.

    * Lovenox (low molecular weight heparin) daily starting CD6 when ttc, twice daily when pg, stopping for labor, resuming daily for six weeks after delivery.

    Don't worry. Thousands upon thousands of women use heparin products to save the lives of their babies and maintain their own health throughout and immediately following a pg. I would recommend going through Dr. Stricker's office. They have 700 active patients right now, and a staff of five people, so don't expect e-mails to be the way to go. Register as a patient, complete your testing, and get a consult.

    I hope this is helpful. I'm so glad you found this answer. There may be more immune issues at work (MTHFR patients often have antiphospholipid antibodies, for example, which, in addition to contributing to clotting problems, can function like antisperm antibodies and interfere with ttc.) It's important for you to have full and complete immune testing, and to work with a doctor who knows what he or she is doing in these areas.

    Kind regards,
    Lauren


  4. #3
    Ruth41
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    Hi Michelle,

    I just posted a long winded response to you and somehow lost it! Arrgh!

    I agree with Lauren. Your doc (sorry doc) is not nearly as up on this stuff as we are. I am homo MTHFR and after 5 pg losses, I know more than most doctors on this matter. You will need to be medicated. End of story.

    I would call Dr. Beer's office, as Lauren said, and set up a phone consult after you fill out the online patient registration. It will take you forever to complete, but it's so worth it! When Beer was alive, he was willing to work over the phone with my doc and I'm sure the practice is still the same. They are the leaders in this field and they should set your protocol, not your doctor. Obviously, your doc is not up to speed if he/she thinks homocysteine has any bearing on MTHFR and pg. You definitely need baby aspirin, folgard, lovenox, like Lauren said. I take Lovenox now and it's relatively safe. Tons of women take it and carry to term successfully. If you read my older posts you will see that I tried folic acid and m/c'd. I tried baby aspirin and folic acid and m/c'd. You need all 3 on board when you are pg. Lovenox is critical. My current RE wouldn't even do IVF on me without Lovenox. Finally, a doctor who knows his stuff!

    Docs are human. They can't know everything. The fact that you have been turned onto a practice like Beer's, where they understand this stuff is important. It took me a while to find someone (Lauren) to help me and turn me onto a good doctor. Take advantage of that!

    Best of luck,
    R


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