Factor V Leiden Heterozygous — The Bump
High-Risk Pregnancy

Factor V Leiden Heterozygous

Hi all, 

I'm new to The Bump - as I am just 5 and a half weeks pregnant! After suffering from a blood clot about 8 years ago (superficial vein in leg, not a DVT), I found out that I am positive for the Factor V Leiden (1 gene). Because of my previous blood clot, I've been labeled high risk at my OB-GYN. My hematologist originally recommended that I receive a therapeutic dose of Lovenox while pregnant (which I began just days after finding out I was pregnant). After meeting with her yesterday, to tell her that I was pregnant and that my OB wanted me monitored by my hematologist, my hematologist suddenly said that she read an article or 2 that said a woman in my position does not need doses of Lovenox until post-delivery. I was shocked! At our original meeting, she explained that after many miscarriages, it is discovered that the woman is positive for FVL and once they are put on Lovenox, they are able to carry full-term. I asked her to explain how that would affect my changes of a MC, but she simply gave me a blank stare. She also said that my family history would affect my chances. Although my aunt had a miscarriage, my great aunt had several miscarriages and lost a baby after birth, and another aunt has had many blood clots, she told me that that doesn't matter - only my immediate family (parents, siblings) history mattered. I became visibly upset, as I do not want to miscarry, when I know that I am already at risk, and she told me that it was MY decision and that I should do the research myself to make an educated decision as to whether or not I should continue on the Lovenox throughout my pregnancy. I was appalled, upset, confused, and scared.

Aside from switching hematologists, does anyone have any thoughts on this? Anyone out there FVL + (hetero) with any or no history of clots who can share their thoughts or experiences?

Thanks, 
Susan

Re: Factor V Leiden Heterozygous

  • I found out I had FVL hetero after having 2 miscarriages (one at 5 1/2 weeks and one at 13 1/2 weeks) and upon becoming pregnant the 3rd time.  I had a new OB who sent me to a hematologist for blood work to just rule out any clotting or other issues.  And lo and behold I was positive.  I was immediately put on a daily dosage of Lovenox with the intention of switching to Heparin closer to delivery.  I have had no history of clots and was shocked I had this.....but so glad to find out so I could be proactive.  I will never know if it had anything to do with the prior miscarriages but I think it was part of it.  I would switch hematologists immediately and find one who not only has a better bedside manner but also more experience with this condition during pregnancy.  I would ask your OB for a recommendation  - thats how I got mine and it was so great that they knew each other and had worked together before.  And as an fyi I had my healthy baby girl in January 2012.

    Good luck!
    Baby Birthday Ticker Ticker
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  • What did ur mfm say? I am on lovenox for mthfr. If I were u I would continue taking it. Why risk it? Why just wait and see if u have a miscarriage? Better safe than sorry right? ;)
    BFP #1 (7/13/12) MC (8/14) 9 weeks. D & C 8/17.
    BFP #2 (5/18/13) due 1/26/14. Grow baby grow!
    Its a surprise! Team green!


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  • I found out I have FVL hetergyzous later in my pregnancy (around 25 weeks).  I have been on Lovenox since then and just switched to Heparin at 36 weeks.  I have had no history of clots, and asked to be tested since I found out my mother and brother both have the gene.  Neither of them have had clots either, but my grandmother had a history of clots.  

    I would definitely recommend another doctor.  I have had no issues while taking the Lovenox (40mg 1x per day as well as a daily dose of baby aspirin) or when I switched to heparin the other day.  It is definitely worth it to me to reduce the risk of m/c.  If you have a history of clots, I am surprised that the doc did not 100% recommend Lovenox as well as a daily low dose aspirin.  For sure get another opinion!  

    The shots are a nuisance but you get used to them quickly.  Good luck!  
    Baby Birthday Ticker Ticker
  • Hello ladies, I also have FVL and am 5 weeks pregnant with my first. I made my ob appointment and its still 2 weeks away, however I did not tell them on the phone about my FVL... I figured this is something that we would talk about at my appt on the 25th. However, now I am concerned that maybe I should be seen sooner... Do you think I should call them back?
  • Mwyld said:
    Hello ladies, I also have FVL and am 5 weeks pregnant with my first. I made my ob appointment and its still 2 weeks away, however I did not tell them on the phone about my FVL... I figured this is something that we would talk about at my appt on the 25th. However, now I am concerned that maybe I should be seen sooner... Do you think I should call them back?
    Yes, I would call and ask about baby aspirin, possibly Lovenox.
    TTC #1 12/2009
    BFP #1 1/2010, M/C 6 weeks
    BFP #2 6/2010, DD lost to congenital heart disease, we are heartbroken.

    TTC #2 4/2011, diagnosed MTHFR, FVL
    Four natural cycles BFN; Clomid IUI BFN; Follistim IUI BFN;
    1/2012 IVF #1 BFN
    4/2012 FET BFP #3
    5/2012 7w1d u/s: anembryonic demise; M/C @ 8w.
    6/2012 found Stage II/III endo on laparoscopy, removed w/ laser.
    8/2012 IVF #2 epic fail: no viable embryos.

    Vacation, break, second opinions, on to new RE.
    1/2013 Surprise chemical pregnancy BFP #4 (break cycle), IVF #3 postponed.
    2/2013 TI w/ hormonal support, prednisone, aspirin, Lovenox, acupuncture gave us a miracle BFP #5!
    Heartbeat on U/S at 6w1d! Baby,please stay!!
    Our miracle baby boy arrived 10/2013!  We are so in love!!

    10/2014 Surprise BFP #6
    Our second daughter arrived in May 2015!  We are so grateful!  

    Lilypie Angel and Memorial tickers


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  • Switch Dr's, sounds like your gut is also telling you this person is wrong.  I also have Factor V, protein S, Protein C, and + Anticardio Lipen.  I have been on 1 shot a day while TTC and 2 shots a day during pregnancy. I have had 1 successful pregnancy and 1 miscarriage (not due to clots)  This is protection for YOU and your BABY!  There is no other choice in my mind. 
    Married 10/29/2005
    TTC 2 years and BFP! High risk pregnancy - high BP, Gestational diabetes on insulin, 4 blood clotting problems on lovenox 2x a day TTC again 3 years - BFP 3/2013. Lost baby 4/2014
    Referred to RE by high risk DR - diagnosis unexplained female infertility and 2% morphology male infertility.
    Clomid/ovadril Without IUI - BFN 5/2013
    Clomid/ovadril Without  IUI - BFN 6/2013
    Clomid/ovadril With IUI -  7/31/2013 and 8/1/2012 BFP WITH TWINS!  Vanishing twin @ 7wks

    EDD with surviving twin 4/25/2014!
  • I have Leiden factor V, protein S deficiency and MTHFR. I started out on 40 mg of lovenox daily and ended up with a blood clot in my leg from my groin to my ankle. My hematologist said the extra weight from the uterus puts extra pressure on the lower venous system. So now I'm on 100 mg twice a day.
  • I have Factor II and was on 150mg of Lovenox and now I am on heparin in the hospital. I have a history of PEs and my dad is the gene carrier but my mom also has a history. Going to enough hematologists before I found mine I know you will need a nee one and thinners are necessary. Good luck and it is hard firing a doctor but you have to be your own advocate.
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