Factor V Leiden, MTHFR & Pregnancy
Note added on 11/21/09: I am now 34 weeks pregnant! The pregnancy has been great (despite being sick the entire time thus far)…baby is well and growing far above the average, which is good news! There have been some talk about Lovenox and Heparin being linked to low birth weight but I have not had problems.
10 days ago I went into preterm labor and was in the hospital for a week and now at home on bed rest. Because of the risk of going into labor again I have been switched to Heparin in preparation for a possible c-section (baby is still breech). All is well!
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Note added on 6/15/09: I am now pregnant and taking shots every day. So far everything is going very well 
There is a great blog dedicated to pregnancy and living with Factor V and blood clotting. Please visit thebabybump.wordpress.com
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Factor V Leiden & MTHFR are blood clotting disorders that many people have but don’t know about. I found out that I have these disorders through my worst personal tragedy.
I suffered my second miscarriage last Easter weekend. Thankfully I have an amazing OBGYN who didn’t waste a moment and had every blood test in the book done on me. Factor V Leiden and MTHFR came back positive. What does this mean? Let me first explain both disorders:
Factor V Leiden is a blood clotting disorder that is inherited from one parent (heterozygote, or hetero) or from both (homozygote, or homo). I have one copy of the gene (hetero), thanks Mom
Women who are diagnosed with FVL are generally considered high risk in pregnancy…. Women with Factor V Leiden (FVL) have a substantially increased risk of clotting in pregnancy (and on estrogen containing birth control pills or hormone replacement) in the form of DVT (deep vein thrombosis. They also have an increased risk of preeclampsia, as well as miscarriage and stillbirth due to clotting in the placenta, umbilical cord, or the fetus….Note that many, many of these women go through one or more pregnancies with no difficulties, while others may miscarry over and over again, and still others may develop clots within weeks of becoming pregnant. (Jennifer Rosenberg, CD, Midwifery Today)
MTHFR (Methylenetetrahydrofolate reductase) is the name of a gene that produces an enzyme. I have two copies of the gene (homozygote), thanks Mom & Dad
If a person carries the genetic mutation that inhibits production of this enzyme, it can result in hyperhomocytenemia, which is an elevated level of an enzyme called homocysteine found in blood plasma. When the body is deficient in methylenetetrahydrofolate reductase, its ability to absorb folate (also known as vitamin B9), such as folic acid, is inhibited. (PregnancyInfo.net)
In addition to the lack of folic acid, another symptom of the MTHFR disorder is blood clotting.
What does this mean for me? Enormous doses of B9/folic acid, daily shots for 38 weeks, a scheduled early delivery and a successful (we hope) pregnancy.
This is still all so new to me. There is little information about both disorders because the medical world has only known about them within the past 10 years or so. My Mom told me that she had clotting with a couple of her pregnancies, and her sister (my aunt) did, too. It certainly runs in the family.
I could not find any other bloggers that shared their experiences, so I am sharing mine. And I hope that other women who are as confused and as scared as I am can find a little comfort in knowing that they are not alone.
*more information on blood clotting disorders here.
*read another’s success story, too!
Hey, my mom and sister also have LVF. Good luck, and lots of love!
Hey Stephanie, Factor 5 Leiden disorder can be a difficult roadblock for having children and also having MTHFR disorder, I am sure it makes it that much harder but I am very glad you have a doctor who understands. I hope everything works out for you to have children you would be a great mother.
My father and 3 sisters have been tested and were positive for factor 5. We are pretty sure all of us have it. My oldest sister, Cassie died from it, my sister Kelsey has had two miscarriages, my sister Megan has had three miscarriages and two boys. Then my sister amber had twin girls and a son, my sister Nisha has two boys and I have two girls.
Whatever happens in your sitsuation just know heavenly father loves you and everything will work out for you.
We Love you, Stephanie!
Wow, Stephanie. Keep us posted (I’m sure you will) but I wish you the best with pregnancy and your growing family. Everyone seems to have their own pregnancy stories, but yours is definitely one many will not forget! We’ll keep you in our prayers! You deserve the best!
Steph, I had no idea of your struggles (how could I?). I’m so sorry. Although not the same obstacles, J & I had our own fertility issues and had to do InVitro to get our R (miracle!). We are now trying to adopt through LDS Family Services. The one thing I’ve learned through our experience is “all in the Lord’s time”. You will be in our prayers for sure. Much aloha, my friend.
I have the exact same problem. 1 gene Factor 5 Leiden and 2 genes of the MTHFR. I have had more miscarriages than I want to admit. My last 2 pregnancies were tubal pregnancys, and now I have no fallopian tubes. I went to a specialist, who never tested me for either of these. My sister suggested I get tested for Factor 5 and then I went for further blood testing with a specialist, he spoke to an OBGYN, who suggested other tests, and now I am under her care. I am so dissapointed that my highly referred specialist didnt test me for either. He was very arrogant and thought he knew everything without any testing. My only chance left is IVF and I am scared and hesitant to try it. I have created a google -alert so thats how I got here.
I wish you the best. I hope it turns out well for you. Best wishes!
I was found to have the exact same issue just last week. I am giving myself injections, taking extra folic acid, and taking a whopper of a prenatal vitamin. How are the shots going for you? I am bruising like no other sometimes, but not always.
I too tested positive for Factor 5 (1 copy) and MTHFR (1 strong and 1 weak copy). With my first pregnancy was going well until I developed preeclampsia in the 3rd trimester that quickly turned into HELLP. I had a C-section 5 1/2 weeks early. I recovered well and my daughter was fabulous, God is good. However, things were harder with my second. Although I got pregnant very quickly with my daughter, I had major problems getting pregnant the second time. I ended up at a fertility clinic were on the third IUI I was pregnant. Only to lose the baby at 14 weeks. I did a Chromozonal Analysis after my D&C that came back negative. So, I proceeded with the IUI’s to try again. Finally, after 3 more tries I was ready to move to Invtro when my fertility doctor decided to do a bunch of blood tests to make sure we knew what we were up against if by chance I found myself pregnant with twins. He was concerned that I could have Lupus Anticoaqulant (not sure on the spelling). I wish he had thought of this sooner, but I am so happy he did for two reasons. First, because I was preparting for Invitro and taking the blood tests I went off the Gonal F shots that I was taking to help my folicles grow. I have a feeling that these shots may contain a natural estrogen and it turns out that this may have increased my problems being a Factor 5 Leiden carrier. Second, and more amazing, because my sister who was about 4 months pregnant at the time ended up being a carrier as well. If I had not done this she never would have known. She is now on Lovenox and baby aspirin. I am thankful every day that I went through the tests and may have saved my sister from going through what I did. I am now 8 weeks pregnant, on Lovenox and baby aspirin. However, since I tested positive for MTHFR and we still do not know about my sister, I am on extra Folic Acid and special prenatals. I am nervous every day that something may happen to my baby after losing the last one. But I am thankful also every day to have another chance. My fertility doctor said something that I want to share with everyone that finds themself in the same situation. After we determined I was pregnant and the first few ultrasounds went very well, he said to ease my mind, “We are doing everything right based on what we know, that is all we can do. Keep doing the right things and don’t let yourself be bogged down by those things you cannot control.” Even though I still worry, and pray, I worry a bit less than I did before.
I have been pregnant a total of 5 times, 4 resulting in early miscarriage (one a chemical pregnancy, the other 3 were at about 6 1/2 weeks.)
I had one uneventful pregnancy inbetween. my most recent 2 miscarriages were within the first year after giving birth. I am also age 35.
Everything was normal except have 2 copies of the MTHFR mutation. I did not know this when I was pregnant with my daughter.
My dr only recommended increasing folic acid now and taking a baby aspirin when I find out I am pregnant.
Thats all there is to do. Hopefully I will have a healthy pregnancy.
Thank you everyone for sharing your experiences. It is so great to know that I am not alone in this journey. Please continue to share your thoughts and feelings because I know that this post will help someone out there who is also looking for answers and support
I just got digonosed with MTHFR on Monday and I live in a small town so NONE of the doctors can tell me much about it, from what I understand its a blood clotting disorder and it effects pregnancies which explains my two miscarriages this year, but I want to know what it does if you are not pregnant. Do I need to be takeing medicine or do I need to change my diet? I have to see specialists but in the mean time I am going to be worried sick. Does anyone know anything about this? Help
I was diagnosed with FVL (2 genes) three weeks ago and was 4 weeks pregnant. I lost the pregnancy somewhere between 6 and 7 weeks. Just found out yesterday. I am not into taking pills and feel that there is a natural way to get the stickiness out of the blood. They have me on 1 81mg of asprin a day now. They took me off of the Lovenox until I get pregnant again. I have just started researching this genetic mutation and am very happy to know there are other people like me. I am 34 and trying so hard for my first baby. It is frustrating for both me and my husband.
The natural thinners I am reading about are: Ginko, Ginseng, Ginger, Garlic, Onion, Omega3’s and many more. Of course you don’t want to thin it too much so I could suggest getting a ppt every once in a while.
Does anyone else have success with natural ways to thin your blood?
I take a baby aspirin (81 mg) everyday. There is not much else you can do while you are not pregnant. The greater risk is when you are. See your specialist/perinatologist as soon as you can and ask all the questions that you have.
‘CS’, I don’t know of any natural remedy to thin blood, but I do would take caution on what and how much of it is taken during pregnancy. Consult a pharmacist and your doctor as well. Let us know what you find out – I’m sure there are others that would appreciate the information
Your stories are inspiring. I had a miscarriage in September, the 11th week of my first pregnancy. I got pregnant again in late December thinking that everything would go smoothly this time. My dad recently found out that he has FVL and recommended that I get tested for it as well. At my first doctor visit, they did the normal bloodwork and also tested for FVL. My nurse called yesterday and informed me that not only do I have FVL, but I also have MTHFR. I am acared to death. I am going back to the dr on Monday for more bloodwork to see what we are going to do from here. Does anyone know what I have in store? What might I have to take? What are my chances for a healthy pregnancy?
When I was pregnant the first time with my son I was diagnosed with have a single umbilical artery which can cause growth problems. I delivered a little early and my son was small for his age, but totally healthy baby. I am now about 10 weeks pregnant and just to be cautious my Dr ordered extra labs and I just found out I have Factor V and MTHFR. They are wondering if this was the cause for the Single umbilical artery with my son. So how high are the chances of clotting issues? In addition I keep reading all these articles stating that birth defects can be a result of MTHFR. I have not had any issues in the past in addition I was adopted so I have no medical history.
Will they do tests to determine what form I have? I just got the call yesterday to tell me this information.
Glad I found somewhere that has a little information about MTHFR and FVL! I had a miscarriage at 15 1/2 wks. at the end of 12/08, and my doc did a series of blood tests about a week ago. She called me tonight and told me the MTHFR was positive, the FVL is still pending. I don’t really have any stories to share….just wanted to let you know that I am appreciative to have found this website and read about other experiences with MTHFR and FVL. Before I had the miscarriage I had a relatively normal pregnancy….did develop preeclampsia at 37 weeks and the baby was delivered by c-section…..now a healthly 2yr old. I’m thankful that my doc went on and did the bloodwork…I know may providers don’t after just one miscarriage. Anyway, now I don’t feel so alone…..very worried about the prospect of giving myself shots every day whenever I decide I am ready to get pregnant again, but we do what we have to i guess
I have just found out, after micarriage #3, that I have the MTHFR factor but don’t know yet if it is hetro or homo. I go in tomorrow to get the full run down of the test results. I’m 30, and still trying to have my first child. I have also had a Pulmonary Emboli, and now it seems to make sense as to why. I’m anxious to try and concieve again as soon as I can- now that we have an idea why I lost the first three. How long should I wait to try again? It took me 4 1/2 years to get pregnant after my last loss- and I’m afraid if I wait too long, it’ll be another 4 years. Is this cycle too soon to try again??
I don’t believe that it is too soon to try. Of course I am not a doctor, but I do know that we cannot get time back, and it keeps going whether we like it or not. Use every moment you have available to be proactive in trying to conceive again so that if it does take you another year or longer you will not have wasted any time.
Best wishes to you, Steph!
WOW! I am so glad that so many women have been open about their feelings and experiences with FVL. I was diagnosed with the same and another disorder over a year ago (after several miscarriages). I am really surprised that not more women know about this risk, and I am also surprised that testing for such a common risk factor is not tested for earlier in a woman’s life.
I started a blog dedicated to FLV etc. and I hope that it helps just as you have already helped others
FVLGirl
http://thebabybump.wordpress.com
Well, it isn’t as simple as I’d hoped. I found out on Tuesday that I have ANTICARDIOLIPIN SYNDROME with LUPUS ANTICOAGULANTS and MTHFR FACTOR. I am beside myself. I hoped this was going to be an easy fix- but my doctor said he hasn’t seen this syndrome in 10 years. And that IF I can carry a child, it may only be after 5, 10 or even 15 losses. And then I will have to have Heparin or Lovonox shots every day of the pregnancy. I’m scared to death!!! Any advice????
I had elevated Anticardiolipin levels and I had my daughter in 2002. Back then they didn’t have a name for it. I had to take 81mg Aspirin daily and Heparin injections twice a day. I did have her a month early due to placentia previa, she also quit growing in utero at about 35 weeks. I had two miscarriages in one year about four years prior and my doctor suggested testing both me and my husband. I had delivered my first daughter twelve years before my second with no problems whatsoever and I was shocked to find out I had developed this condition. I went to a specialist and by regular OB through my whole pregnancy. Maybe you need to seek the advice of a specialist as well. The shots were annoying, but you use very small needles and I tell my 7 year old now it was totally worth all I had to go through for her. Good luck!
I am pleased to announce that I have a happy, healthy 4 month old baby girl.
It took 3 years, one misscarriage, and finally finding out that I have Facor 5 and MTHFR (as noted in my entry from 2008). I too was on Lovenox shots-baby aspirin- extra Folic Acid-and Juice Plus vitamins in addition to my prentals, the entire pregnancy then for 6 weeks after my C-section I had to do Lovenox and baby aspirin. Actually, I did move to Heparin for a few weeks before the C-section. I want to give hope to those with the same situation as not only was I able to successfully carry this baby but my sister, with same diagonisis as I since both Factor 5 and MTHFR are heriditary, successfully delivered her baby.
I was starting to show signs of pre-eclampsia once more but this time only towards the very end. Katie came 3 weeks early so it turned out to not be a problem.
I almost gave up trying to get pregnant. But I thank Jesus every day for my miracle baby Katie.
dianne
I don’t know much about APS or Lupus Anticoagulants but I do know that you will still have to have daily blood thinner shots, maybe two a day. The combination of all three disorders sound like it may be harder to keep a pregnancy, but I don’t know.
Many women that I have talked to have said that the shots are scary at first but then you get used to it.
Make sure you ask your doctor all the questions you have, and hopefully you will also be referred to see a Perinatologist/Genetic Counselor who can tell you more information about the disorders and how to work with them while you are pregnant.
My advice to you is to do as much research as you can, see a genetic counselor and talk to you doctor and make sure he/she knows how you feel.
I forgot to mention this on my last submission.
Something that really helped me through the shots, since I really hate shots, was using ice to numb the area before I gave myself the shot. This was suggested to me from a fried who does the same for his diabetic shots.
I hope it will help you like it helped me.
dianne
I am 24 years old and had a pulmonary embolism at the age of 16. I was taking the contraceptive pill for only three weeks when this happened, Shortly after I was diagnosed with factor 5 leidon and Im a carrier from both parents.
I am now thinking of trying for a baby but Im extremely scared of what might happen. I have an appointment with the doctor tomo and Im considering going private to try for a doctor that truly cares. 3 years ago I went to see a specialist and was told for six months I will have to have injections which Im so scared of, I was also told the dosage could affect the babies health?
Im so grateful I have found this group as I really did think I was the only one. I never really knew anything about factor 5 leidon till now but must admit this sight has scared me even more.
Hi Everyone,
I also have Factor V Leiden and Factor II Prothomblibin. I was pregnant with my first child last year and lost my son in the 9th month of pregnancy due to a blood clot in the placenta. This has been the most horrific year for both my husband and myself. Giving birth to a baby that you don’t get to take home shouldn’t happen to anyone.
After losing our baby, a bunch of tests were done, and we found out afterwards about the blood clotting issues. I want to reach out to everyone and tell them to be proactive about their health and to ask lots of questions!! I wish I asked more questions during my pregnancy (my tummy was small, I had low iron counts, and one day in the 9th month I just didn’t feel right).
Good luck to everyone. We’re trying again and hopefully we will be able to get pregnant soon. I want to fill that baby nursery more than anything!
You story is so heartbreaking! You have lived through my worst nightmare, and I feel badly that you did. I also know another woman who (years ago) lost her baby two days before her delivery due to clotting in the placenta. It was awful – because she still had to deliver! I cannot image how that would be.
It’s such a good thing that you now know what you need to do next time you are pregnant. Of course there are other reasons why miscarriages happen (not all that we know of) but the proper medications and blood thinning medications highly increase the chances of carrying a pregnancy to term – and holding a little one in your arms
I am now pregnant and taking the shots all the time! Everything is going well for far…
My daughter has hetero FVL and also a pre existing splenic vein thrombosis, which has caused many large gastric varices, she has received no treatment for this condition, and has the added complication of having medullary sponge kidney ( causes small kidney stones to form) and several large benign tumours, 1 on her pancreas and another in 1 ovary.
To her shock she has just discovered she has fallen pregnant.
I am worried sick about this, she wants to continue with the pregnancy but I have graves concerns for her health no matter what course of action she takes.
Does anyone know of people who have this sort of medical issue that have survived with a healthy baby as the outcome?
That is such wonderful news Steph. Really wonderful. I will pray for you.
Try ice on the spot before the shot. It really helps.
dianne
Hi Everyone!
What an informative website! I’m new to blogging in general, so please bear with me. I had 2 miscarriages this year and was recently diagnosed with MTHFR (Heterozygous) and Factor V Leiden (Heterozygous) and I carry Thyroid Antibodies. My OB/GYN told me that he will put me on Lovenox when I am pregnant again. I am also taking the Pre-Natal DHA vitamins.
My husband and I are will be traveling out of the country for 7 Days in August 2009 with limited access to medical facilities. I would like to try to get pregnant now, but do not know if it is too risky to do it now or wait 2 months until I return from the trip in August. If I were to get pregnant this month, then I would be 8 weeks pregnant on the 7-Day trip. Both my miscarriages ended in the 6th week of pregnancy and I really want to try to get pregnant right away, but I am worried that I will have to see my doctor often while I am on Lovenox.
How often do I need to see a doctor when I am on Lovenox? Do you recommend I wait to get pregnant until I return from the trip in August? Should I see a Hematologist even though my OB/GYN did not recommend that I see one?
Thank you very much for your support! +++++ Sam
The best advice to give you is to seek the advice of a specialist (I see a Perinatologist). Most likely you will need to start the shots as soon as you find out that you are pregnant. If you feel uneasy about traveling early in the first trimester (and being far from good medical facilities etc) then I would avoid it- – but that is just me. I had the same fears when trying to decide to go to South America this fall with my husband. I decided not to go because not only will I be almost six months along but I don’t want to take any risks with the long flights etc.
Still, I would find a Perinatologist in your area (and covered by your insurance) to get all your questions answered. Good luck!
I also have homo MTHFR and Heter FVL. I was diagnosised after two losses one at 7 weeks and the other at 22 weeks due to a blood clot in the placenta. My husband and I are also trying again and I am putting off traveling due to the increased risks of blood clots due to flying so if you are ttc I would buy flight insurance and if you are pregnant in august get a note from your doc and get your money back and stay home. That is my opionion of course I am not a doc but a mom who has lost several babies due to over blood clotting. Good luck to you. Colleen..
I have FVL and 2 copies of Homo. MTHFR I never relaized how many women have tge same condition, it is a struggle and very hard to deal wuth sometimes. I had 7 miscarriges and only told to go home and
try again. Fed up with those doctors, I picked up the phone book and got an appointment that day with a new obgyn. We I arrived we found out I was having a miscarrige, he ran every test possible and gave me a diagonse,FVL and MTHFR. I thought I would never be able to be a mother but as of today I have a healthy 11 month baby boy. I took b12,b6,multi-v,folic acid,b complex, baby asprin and lovenox/heprain daily for the whole pregnancy. So KEEP your heads up and if your in Jax,Fl and need to know the best obgyn just ask me.
I too have Factor V Leiden and MTHFR. In addition, I have RA and have had 5 MC. I’m trying to find information on the safety of taking Clomid with the above conditions. Any advice?
From what I understand Clomid is very safe. I was about a week away from starting that treatment plan and then I got pregnant. Of course I advise to consult with your OBGYN. They are pretty knowledgeable!
I was just diagnosed last week with factor V leiden (1) and homo mthfr after years of fertility treatments and two m/c at 12 and 10 wks. It was so devastating this last time because I actually was able to see my baby’s heart beating one week and not the next. My doctor referred me to a hematologist and also a rhuematologist to test me for lupus. I have been searching online for a week now trying to figure all of this out. Thank you so much for your posts…it is encouraging to know I am not alone.
Believe it or not there are so many of us women out there in the same situation. It has been great to find others and have a little support system going…very helpful
The treatments seem to be very successful so I know you will have your little baby one day! Best of luck to you!
Definitely find a specialist in your area to find out the risks of her conditions. I personally have not been contacted by anyone with those particular issues, but I know that consulting a specialist is the best thing for you daughter. Good luck!