FertileThoughts.com - Infertility, adoption, pregnancy and parenting discussions
MTHFR and LOVENOX???

Thanks Thanks:  0
Likes Likes:  0
Dislikes Dislikes:  0
Results 1 to 9 of 9
  1. #1
    olina
    has no status.
    Registered User

    Join Date
    Jul 2005
    Location
    saint louis
    Posts
    75
    Post Thanks / Like

    MTHFR and LOVENOX???

    Hi Gals,
    I'm Homozygote for the mutation C677T of MTHFR. I've had 2 m/c, and 3 BFN (I think because I had a hydrosalpinx which was removed last november)
    I'm starting a new fresh cycle in April. I'm taking BCP now, and for the MTHFR Folgard (twice a day) + baby aspirin+ Prenatal Vitamins.
    I went to see a Hemathologist yesterday, and he said he was going to put me on Lovenox as soon as I get pregnant (not before as I've seen here in some cases)
    I have several questions, if you all don't mind me asking?
    1- If you are also in Lovenox: when did you start it? and was that for any particular reason?
    2-Do you know if it also (combined with the baby aspirin) helps to the implantation phase?
    3- about the Folgard: did they mention anything to you about lowering the risks for the baby to have neural tube defects, by the use of the Folgard?

    Thanks so much for answering,
    Olina


  2. Advertisement


  3. #2
    JLmee
    has no status.
    Registered User

    Join Date
    Dec 2004
    Location
    Somewhere on Planet Earth
    Posts
    712
    Post Thanks / Like
    My Mood
    Amused

    Confused Olina

    I too am homozygous for MTHFR C677t mutation. Through the boards here I learned of a Reproductive Immunologist in Cali and had a consultation with him. No he did not recommend Lovenox, but another blood thinner instead. I havn't done anything about that yet, cause there is additional treatment for me. Because I have several other immune issues he wants me to go for LIT treatment in Mexico. Something about my Dh's and my DNA being too close to support a pregnancy. Im draggin my feet about this cause I have heard that people have died from anaphalatic (sp) shock from this procedure. What confuses the HELL out of me is that no RE or the hematologist here thinks I need to be on blood thinners!!!!??? I just dont get it!! The Immunologist also told me that I would need blood thinners for any airplane travel too. My Ob and the hematologist have sorta reluctantly agreed to give me Kumadin for my trip in August, and my adoption journey. We decided to adopt for now so at least we can have 1 child before were too old to remember our names. (seriously) I have had 2 losses myself, and each one felt like the end of the world. Anyway I just wanted to let you know there was a fellow MTHFR er out there.

    Jlmee


  4. #3
    Ruth41
    has no status.
    Registered User
    Ruth41's Avatar
    Join Date
    Aug 2005
    Location
    San Diego, California
    Posts
    147
    Post Thanks / Like
    JLmee,
    Did you see my post to you about Coumadin?? I want to make sure you did. I strongly urge you to call Dr. Beer before you have another doctor to reluctantly give you Coumadin. I have been told it is not nearly as safe as Lovenox or Heparin and I don't know a soul who took Coumadin for MTHFR issues. I know how confusing this is. I was actually pg when I was diagnosed with homo MTHFR C677T and trying to get some direction from my doctors while I was in a panic. Of 4 doctors not one could agree. The two men said not to worry - but later admitted they knew very little about MTHFR except what Labcorp prints on the test results for the doctors - whic is WRONG - and in the end two female ob/gyns agreed to start me on Lovenox once we had a heartbeat. I was nervous of losing the pg before a heartbeat, so I started shots earlier with my doctor's blessing because she said it couldn't hurt. Both female docs admitted this genetic disorder was newly discovered and there is no established protocol. They also both said they had treated women who carried to term successfully with Lovenox. One said she didn't think shots were really necessary, but the doc who agreed that I should be on Lovenox had a higher success rate for MTHFR patients than the female doc who didn't really feel I needed the shots -but was willing to go along with it. It was so frustrating for me that I finally just put out an emergency post to anyone who had carried to term successfully - and I got responses - and all of them had been on shots of blood thinner. It made my decision for me. Doctors often don't want to prescribe something until a tried and true protocol has been established. I'd be 50 before that happens. So I went to the real world for answers and for me it worked. I have been told that there is a group on yahoo that is very into these genetic issues, esp MTHFR and you might want to tap them for info and advice. I've said it before and I'll say it again - most doctors don't understand these genetic issues yet so I'm not surprised no one wants to put you on blood thinners. What kind of shots did Beer say you should be on if not Lovenox??

    Olina,
    If you have MTHFR, you should not be on birth control pills or Estrace!!!! They increase your risk for blood clots. You can easily do a cycle without either. Does your doctor understand your hypercoagulation issue? FYI, my doctor told me not to worry and 3 other doctors told me he was crazy for giving me the meds.....after the fact. Very few doctors understand what being homozygous MTHFR is all about and it's important for your own health that you at least understand it.


  5. #4
    Ruth41
    has no status.
    Registered User
    Ruth41's Avatar
    Join Date
    Aug 2005
    Location
    San Diego, California
    Posts
    147
    Post Thanks / Like
    Hi Munchin!

    I remember you. We did IVF around the same time. I'm SO very sorry to hear about your losses. I have the very same MTHFR thing you have and I found out about it during that last IVF cycle. The most important thing for you to know is that you have two copies of the same mutant gene - one inherited from each parent. That is the worst type of MTHFR mutation and very well may be the reason why you m/c'd at 21 weeks. I can't believe your doctors do not think you should be on Lovenox shots. Did you do any genetic testing to determine why you m/c'd? I m/c'd once and because the testing showed an age-related chromosomal abnormality, I was led to believe it was a fluke and if it was a healthy fetus that I would have carried to term. I have since learned that is not true. With my condition, a healthy fetus is at risk unless I am treated.

    Here's the short story about MTHFR. It's a mutation of a gene that is responsible for the breakdown and absorption of folate (folic acid). The theory is that we only absorb about 1/3 of the folic acid that we take in because of the defect we have. Folic acid is critical to over all good health. One of the things folate or folic acide does is to help convert homocysteine to methionine. When homocysteine is high, you're at increased risk of vascular disease. So for YOUR health alone, you will need mega doses of not only folic acid - but also B6 and B12. There are two Folgard products you can take. One is over the counter and the other is prescription. The difference is strength. I was told women with 2 mutations of the MTHFR gene should be on double the amount of Folgard than those women who only have 1 mutation of the gene. The prescription strength makes it easy - you just take 2 tabs a day.

    A buildup of homocysteine in your blood can lead to blood clot formation and hardening of the arteries. Of course, blood clots can lead to stroke and heart attack as well. So, not only do we need the Folgard, but we also need some sort of mild blood thinner - baby aspirin. I've been told that even in a non-pregnant state, this is what homozygous MTHFR patients need for optimum health.

    The state of pregnancy in a healthy woman creates the risk for blood clots because your blood thickens naturally when pregnant. We women with homo MTHFR problems are at even higher risk for blood clots. This includes clotting everywhere in our body, but especially in the umbilical cord, which feeds the fetus. Tiny clots can form and starve the fetus which is why blood thinners are so important.

    I can understand a doctor's reluctance to prescribe blood thinners for your condition. First, most doctors don't really understand MTHFR. Ask them the difference between hetero MTHFR and homo MTHFR and I doubt they'll know that one is much worse than the other. Secondly, no formal double blind yadda yadda studies have been published for the doctors to use as criteria when treating you. So they really don't want to go out on a limb and prescribe something when they know little about it and don't have an established protocol. But that doesn't mean there aren't women out there with your condition who haven't been treated successfully and carried to term after several miscarriages. One of the things we homo MTHFR women are subject to is not only early m/c's but also late trimester m/c's and also a higher risk for pre-eclampsia, which is life threatening. This is not to be taken lightly. I would never again get pg and not start shots of blood thinner immediately. You will have to educate yourself and take a hand in your own medical health until the mainstream doctors are up to speed - WHICH THEY ARE NOT.

    I have tons of easy to understand info in a file that I'm happy to share with you. You are welcome to email me at home (rgd@san.rr.com) with your address and I'll copy and mail the stuff off to you if you can't find enough on the net. One of the most compelling things for me was a report published by The Evanston Northwestern Healthcare Division of Maternal Fetal Medicine that says, "Regareding some severe pregnancy complications, 65% of patients with pre-eclampsia, abruptio placentae, fetal growth retardation and stillbirth were found in one study to have one of the number of inherited or acquired clotting system problems, including the MTHFR defect." It goes on to say that women with thrombophilias (clotting issues) are 8 times at greater risk of severe complications. The report does advocate taking prenatal vitamins and folate, B6 and B12 but it does not address shots of blood thinner. That is a newer protocol that was pioneered by Dr. Alan Beer and it seems to carry a higher success rate for healthy term pregnancies than the vitamin regime alone. For that reason, I chose to push for and take shots of blood thinner and will do so again next time. Hopefully one day soon a study will be conducted and our mainstream doctors will have the "established" protocol they apparently need so badly. For now, we'll all have to do our research, share our info and think for ourselves. Hang in there.

    Regards,
    Ruth
    Last edited by Ruth41; 04-14-2006 at 01:52 PM. Reason: clarification


  6. #5
    Lauren2005
    has no status.
    Registered User
    Lauren2005's Avatar
    Join Date
    Apr 2005
    Location
    California
    Posts
    929
    Post Thanks / Like
    Ladies,

    Please listen to Ruth's wisdom about MTHFR. I'm sorry you're feeling so isolated and like it's a unique problem to have MTHFR mutations. Sadly, it's not uncommon in the IF world, because MTHFR can cause IF and m/c. So many, many of us here have MTHFR mutations.

    JLmee, you and I see the same doctor. Dr. Beer recommends Lovenox or Alixtra, depending on the patient. These are both forms of LOW MOLECULAR WEIGHT HEPARIN, which is the appropriate treatment for MTHFR patients with a history of IF and/or m/c. I'm sorry that your local doctors don't seem to know enough about MTHFR to give you the proper information. I'm fortunate in that my general physician, OB/GYN, and RE all agree that Folgard, baby aspirin, and low molecular weight heparin is the right treatmtent for MTHFR. In addition, my parents were tested (MTHFR is genetic, of course) and now THEY are taking Folgard and baby aspirin (prescribed by their own doctor.) MTHFR is not a mystery, or an unknown. I'm sad that your experience has made you feel isolated and confused. Hopefully we can help.

    Olina, your doctor is absolutely correct. You are in good hands. You ask:

    1- If you are also in Lovenox: when did you start it? and was that for any particular reason?

    Lovenox is part of my ttc protocol, starting CD6 of a cycle while ttc. I've ttc three times so far on my immune meds. It was rx because of my compound heterozygous (1 C and 1 A) mutations.

    2-Do you know if it also (combined with the baby aspirin) helps to the implantation phase?

    Yes, this is my issue in particular, and Lovenox/baby aspirin is standard implantation-assistance protocol for women with thrombophilia (MTHFR is one form of inherited thrombophilia.) There are many, many women on the Yahoo immune group who have succeeded with Lovenox. You should be investigating the immune issues bb here on FT as well.

    3- about the Folgard: did they mention anything to you about lowering the risks for the baby to have neural tube defects, by the use of the Folgard?

    Certainly. It is well known that neural tube defects are a result of inadquate folic acid. There was a question for generations... why did some babies get neural tube defects in spite of their mothers' appropriate consumption of folic acid and other B vitamins? This may be one of the explanations. Because MTHFR mutations interfere with our ability to absorb folic acid, we must take many times the normal dosage in order to absorb (and pass on to the baby) the right amount.

    It is possible for women to conceive and carry to term in spite of having MTHFR mutations. For exampe, one of my friends miscarried 8 times, then had a successful pg. Another miscarried 9 times, then had a healthy baby (my friend) who later went on to have a stroke (my friend, not her mom). All of these people learned later that they have MTHFR mutations. Another of my friends had a stroke while on b/c pills (these are real life friends, not met through IF and not online). I bring up these heartbreaking examples to remind all of us to take MTHFR mutations very seriously. Baby aspirin and Folgard everyday for the rest of our lives. Lovenox or other low molecular weight heparin for ttc and pg. Ask a doctor about using the heparin products for international (10+ hour) plane flights. We are SO fortunate to live in a time in which this information is available to us.

    I hope this information has been helpful. I know it's not easy to accept that we have something so potentially serious wrong with our bodies. Fortunately, it can be resolved in the real world with just baby aspirin and vitamins! Were it that all medical problems could be fixed so easily.

    Warmest regards,
    Lauren


  7. #6
    Ruth41
    has no status.
    Registered User
    Ruth41's Avatar
    Join Date
    Aug 2005
    Location
    San Diego, California
    Posts
    147
    Post Thanks / Like
    Lauren is my mentor on this subject and I'm so glad she picked up on this thread and took the time to share her wisdom. Thanks, Lauren!

    Ruth


  8. #7
    JLmee
    has no status.
    Registered User

    Join Date
    Dec 2004
    Location
    Somewhere on Planet Earth
    Posts
    712
    Post Thanks / Like
    My Mood
    Amused

    Ruth and Lauren

    This isn't applicable to me right now, but I have joined the yahoo groups, and have really not found anything medically significant. Maybe Im looking in the wrong place??? Ruth send me a pm please with any MTHFR info you have, so I can use it when I need it. I don't know what the new RE will say when I go back to tx (its about 1.5 years away), but he is a collaborating physician to Dr Beer. Hopefully I wont have trouble. Lauren and Ruth...I just decided I will get the Arixtra script from Dr Beer when I go on the flight. Nevermind these quacks here...LOL

    Jlmee


  9. #8
    Lauren2005
    has no status.
    Registered User
    Lauren2005's Avatar
    Join Date
    Apr 2005
    Location
    California
    Posts
    929
    Post Thanks / Like
    Hi again! My best advice about the Yahoo immune group is to download the files (available on the left side of the home page), especially the study abstracts and summaries. Jane Reed has the full write-up of any particular studies that interest you. There is a helpful file about thrombophilia and also DB's Q&A's can help clarify some of the ideas... It's definitely not a perfect system, but it did help me to make sense of everything when it seemed so overwhelming. I really respect your efforts to reach out for knowledge when faced with doctors who aren't sure what's going on. All the best to you!!!! Lauren


  10. #9
    Ruth41
    has no status.
    Registered User
    Ruth41's Avatar
    Join Date
    Aug 2005
    Location
    San Diego, California
    Posts
    147
    Post Thanks / Like
    Hi Munchkin,

    I just pm'd you back but now saw your post. DO NOT WASTE YOUR MONEY ON IVF UNTIL YOU HAVE A HANDLE ON THIS MTHFR AND A DOCTOR WHO WILL WORK WITH YOU AND YOUR CONDITION!!!! Homozygous MTHFR patients should not take birth control pills or estrace and most RE's don't understand that and prescribe it as part of the IVF protocol. In addition, you should start on baby aspirin now (not 32 mg but 81 mg) and you'll want to start on heparin or lovenox so your doctor should be up to speed on what MTHFR is. My first round of IVF I didn't know I had the MTHFR gene mutation and I got pregnant and miscarried a perfectly healthy fetus. It is very important that you and your doctor be on the same page. From personal experience I can tell you that it is a horrible feeling to be pregnant after a grueling round of IVF and to find out your doctor doesn't really understand your medical condition and how to treat you. You feel completely vulnerable. I would get my ducks in a row first and that might include either educating your doctor or better yet, finding a doctor who understands MTHFR.

    Re: Dr. Beer - he is not that expensive and will consult with you over the phone. First, he requires that you complete a very extensive and time consuming medical history on-line and fax or mail to him copies of your blood test results, if you've had any done. He will even do a brief 1/2 hour consult if money is a concern. He and his staff are such a wealth of information that it would be a pity not to use him as a resource. His website is easy to find and I would at least check that out.


    Ruth
    Last edited by Ruth41; 04-16-2006 at 09:44 PM.


Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  
DISCLAIMER: Fertile Thoughts allows advertisers to publish information about their services. Fertile Thoughts does not provide medical advice or endorse any particular service or approach to treating infertility. We encourage people to learn as much as possible about the range of options available before committing to any one. We also encourage users to share their thoughts on all fertility options on our forums.

Forum Stats

  • Forum Members: 97,617
  • Total Threads: 352,308
  • Total Posts: 4,534,780
There are 204 users currently browsing forums.

Advertisement

Visit Our Partner Sites: Fertility Treatments