Thursday, October 13, 2011

Updated: 30 mg Lovenox Daily

I’m not doing so well right now.  As if endometriosis, diminished ovarian reserve, autoimmune implantation disfunction and a thin uterine lining weren’t enough, I just found out yesterday that I have a blood clotting disorder.

The worst part is that I don’t even know what type of blood clotting disorder it is yet so I can’t calm myself through research.  For the first time I am very unhappy with Dr. Sher’s office.  His nurse informed me via email that I had an abnormal result on my thrombophilia panel, meaning I have a high chance of blood clotting during pregnancy and that they want me on Lovenox shots daily for the rest of the pregnancy.  Who sends information like that via email, at the end of the day??!!

I couldn’t talk to anyone at their office until this morning and still know as little as I did yesterday because I’m waiting on a phone consult with Dr. Sher.  Luckily my sister is a genetic counselor and understands this stuff and is also close with my OB, so the two of them calmed me down enough to make it through the night.

At first the prospect of daily shots for the next 31 weeks sounded daunting, but I’ve accepted that I’m not going to have the sunshine-lollypops pregnancy I imagined during all my IF day dreaming, and that’s OK.  But now I have to sit here for an entire week wondering if I’m already too late.  Most people start Lovenox before their IVF cycle, not at 9 weeks pregnant.  What if I already formed a clot and lost the baby since last week?

I honestly just want to cry.  I just want to curl up in a ball and cry, feel sorry for myself, and yell “why me!?” to God.  Instead I’m sitting here at work because I know there is nothing I can do but start the shots and pray really hard that the damage isn’t already done.

If any of you have any tips on Lovenox please share because I could sure use some.

Update:  I have two copies of the MTHFR gene but normal homocystine levels...  So my REs office sent the results of the test to my OB, who shared them with my genetic councelor sister, who shared them with the local pre-natal gentetic councelor, who shared them with the local high risk perinatologist.  Everyone but Dr. Sher thinks the risks of lovenox are higher than the risk of clotting because the gene polymorphism has not caused my homocystine levels to elevate.  Dr. Sher is adamant that I need to be on Lovenox, everyone else is adamant that I NOT be on Lovenox.  Now I don't know what the F to do.  I've always trusted my OB and my sister sent me to the best perinatologist in the state who concurs, but then again I've always trusted Dr. Sher and he's never let me down...

As for worring about the baby all doctors agree that I shouldn't since the MTHFR mutation doesn't cause early losses.  The issue will come in the 3rd trimester when my risk of pre-eclampsia and placental abruption increase.


  1. Oh Linds...I'm so sorry you are having to go through this. When I asked Jennifer about why the tests were being done, she said it is because clotting issues are really common in IF women, especially those that are pregnant for the first time. I don't know if that gives you any peace but there it is.

    As for what to do about the Lovenox, I just don't have any advice. It's a terrible position to be in. What are the risks of Lovenox? I don't know much about it. Maybe start a pros and cons list?

  2. My doc has me on Lovenox and baby aspirin, but I think it would go only until week 12. I'm compound heterozygous for MTHFR, which is apparently extremely common (30%+ of women). There's a version that's more serious - not sure what it would look like on a test result slip though. At one point they treated everyone with any version of MTHFR with Lovenox - now I think they've relaxed with the common version.

    If you do end up taking Lovenox, it helps to do the injection over about 10 seconds, and then leave the needle in for about 10 seconds. Helps to prevent bruising.

    Hope you figure out something you're comfortable with!

  3. I have no advice to give you, but I was just wanting to step by and let you know I am thinking of you! xo

  4. Oh gosh, I'm so sorry for the overwhelming news! I will pray for you! Hopefully it won't be too bad for you. I take Lovenox, and it doesn't bother me much. It burns a little, but I've gotten used to it. Good luck sweetie!

  5. I have been following your blog since your big announcement.<3 I believe I saw your link on Dana's (angel Jacob's mom) page. I just wanted to send you some encouragement. I was on 40mg of Lovenox twice a day during my rainbow pregnancy. I know how daunting and terrifying it is. If you haven't found it already, the Lovely Lovenox Ladies board on Baby Center is a great resource. There are so many success from women on Lovenox. I asked for several ultrasounds at the beginning to make sure my rainbow was okay and was followed by a maternal fetal specialist later on in the pregnancy. I will be sending hopeful prayers your way.

  6. Oh no! I'm so sorry that you've gotten this news.

    I'm thinking of you and sending positive thoughts in your direction.

  7. Oh Lindsey! I'm so sorry to hear this. I wanted you to have a smooth and thrilling pregnancy. My cousin has different clotting disorder. She opted not to do the shots for her third pregnancy and everything went fine and still is. I think that in the case of her disorder (Factor V Leiden), having had a clotting incident previously or being homozygous affects the treatment plan. Sending positive vibes!

  8. Still here for you sister - always! And I think you've come up with the best possible plan for this!