Showing posts with label Factor V Leiden. Show all posts
Showing posts with label Factor V Leiden. Show all posts
Sunday, August 9, 2015
Summary
It may be helpful to include a summary of our story at the top of our blog.
Losing 3 babies was so sad for my husband & I.
And yet, thanks to treatment and supportive doctors, we were lucky enough to overcome our history & deliver 2 healthy, beautiful full-term babies after diagnosis.
Some doctors don't believe Factor V Leiden (FVL), or other clotting issues, warrant treatment in pregnancy unless the mother has a current or previous clot (usually DVT or PE). I'm not a doctor, but I am grateful that my OB & the 1st MFM specialist were in the camp of "we've seen this work". I know FVL is a common gene. I know it doesn't cause problems for most people who have it. But, it caused problems for me and other FVL women who share the heartache of multiple pregnancy loss.
Other than low birth weight, our 1st 2 pregnancies and babies were healthy. BUT, the next 4 pregnancies resulted in only one living child. 3 of those 4 babies died-- two of which were 2nd trimester losses. That's not just bad luck. That's a maternal factor. That's a problem that needs correcting.
My OB ruled out bacterial infections and fibroids (I have one, but it is fundal, not where implantation occurs). He drew blood to check hormone levels and clotting factors. That's how it was discovered that I am heterozygous FVL.
For the next pregnancy, I took a low dose aspirin until I was within about a month of delivery. I also gave myself a daily shot of anti-coagulants (also a low, prophylactic dose). It worked & our beautiful miracle baby was born at 39 weeks. We could not believe our luck! We were so thrilled that the treatment worked that we had the confidence to try for one more baby. For another 9 months, I did my daily shots and prayed that she too would grow. Again, the blood thinners worked & we held another little miracle in our arms.
While no treatment is guaranteed, I strongly believe that treatment with blood thinners gave us the best possible chance for a baby to keep. May God bless you to find answers and hope on your journey as well.
Tuesday, October 21, 2014
IUGR
Since I'm making this blog public again, it's time for an update. I want to post a few things about my last pregnancy (2nd one on lovenox).
There were many similarities to my 1st lovenox pregnancy. Namely, the anti-coagulant protocol was the same (daily shot of 40 ml lovenox from confirmation of pregnancy until switched to heparin 2x/day shots near delivery + 81mg aspirin until 35 wks.) I had subchorionic hemorrhages (aka SCHs) in both pregnancies that thankfully resolved themselves eventually. Also, there was still a lot of monitoring of the pregnancy including weekly bio-physical profiles in the 3rd trimester. Just like last time, baby was malpositioned, likely due to my large (12 cm) uterine fibroid. Thankfully, this baby followed her sister's example and turned on her own just before the scheduled external cephalic version, so I was able to be induced and deliver vaginally. It was a wonderful birth. We are so lucky to have our little miracles.
Some differences:
1- My MFM moved out of state. The new one was kind and competent, but definitely had a different approach to FVL. He told me at the 1st consultation that he generally subscribes to the ACOG's recommendation that only women with prior clots be treated with injectable bloodthinners in pregnancy. I strongly advocated for treatment with lovenox. (I have a law degree and am emotionally invested, so you can use your imagination here on how difficult I was to convince that my history of recurrent pregnancy loss does not indicate treatment!) When I started citing studies on RPL and genetic thrombophilias, he realized that I was an educated patient and had good reasons not to follow ACOG's recommendations.
2- In part because of the change in MFM and partly because of a lab mix up my first time on lovenox, my anti-factor Xa levels were not checked this pregnancy. We just assumed the dose was adequate last time and continued with that. But in retrospect, perhaps I should have insisted on that again because there was was evidence that it wasn't optimal.
3- The baby's growth slowed significantly as we approached term. Her estimated weight was only in the 10%. (She had measured 50% earlier-- perfectly normal). Her femur length was still average, but her abdominal circumference was only 2.3 percentile. These measurement qualified as Intrauterine Growth Restriction (IUGR). The asymmetrically small abdomen can indicate placental insufficiency. Indeed, when I delivered the OB commented on how small her placenta was. I haven't found any studies linking clotting with a small placenta, but I have read some speculation on this.
Thankfully, she has been busy catching up on her growth since birth.
She is a joy and we are thankful we decided to try again.
She weighed 5lb11oz at birth.
25 percentile for weight at 2 months. She is sweet, healthy & happy.
There were many similarities to my 1st lovenox pregnancy. Namely, the anti-coagulant protocol was the same (daily shot of 40 ml lovenox from confirmation of pregnancy until switched to heparin 2x/day shots near delivery + 81mg aspirin until 35 wks.) I had subchorionic hemorrhages (aka SCHs) in both pregnancies that thankfully resolved themselves eventually. Also, there was still a lot of monitoring of the pregnancy including weekly bio-physical profiles in the 3rd trimester. Just like last time, baby was malpositioned, likely due to my large (12 cm) uterine fibroid. Thankfully, this baby followed her sister's example and turned on her own just before the scheduled external cephalic version, so I was able to be induced and deliver vaginally. It was a wonderful birth. We are so lucky to have our little miracles.
Some differences:
1- My MFM moved out of state. The new one was kind and competent, but definitely had a different approach to FVL. He told me at the 1st consultation that he generally subscribes to the ACOG's recommendation that only women with prior clots be treated with injectable bloodthinners in pregnancy. I strongly advocated for treatment with lovenox. (I have a law degree and am emotionally invested, so you can use your imagination here on how difficult I was to convince that my history of recurrent pregnancy loss does not indicate treatment!) When I started citing studies on RPL and genetic thrombophilias, he realized that I was an educated patient and had good reasons not to follow ACOG's recommendations.
2- In part because of the change in MFM and partly because of a lab mix up my first time on lovenox, my anti-factor Xa levels were not checked this pregnancy. We just assumed the dose was adequate last time and continued with that. But in retrospect, perhaps I should have insisted on that again because there was was evidence that it wasn't optimal.
3- The baby's growth slowed significantly as we approached term. Her estimated weight was only in the 10%. (She had measured 50% earlier-- perfectly normal). Her femur length was still average, but her abdominal circumference was only 2.3 percentile. These measurement qualified as Intrauterine Growth Restriction (IUGR). The asymmetrically small abdomen can indicate placental insufficiency. Indeed, when I delivered the OB commented on how small her placenta was. I haven't found any studies linking clotting with a small placenta, but I have read some speculation on this.
Thankfully, she has been busy catching up on her growth since birth.
She is a joy and we are thankful we decided to try again.
She weighed 5lb11oz at birth.
25 percentile for weight at 2 months. She is sweet, healthy & happy.
Wednesday, January 16, 2013
Hematologists Perspective
Doctors (both OBs and Hematologists) seem to disagree at times about how to treat Factor V Leiden in pregnancy. I recently ran across these two Q & As from the Baylor College of Medicine "ask the expert" site.
I would urge anyone who's doctors are not willing to treat their clotting issue in order to prevent recurrent pregnancy loss to seek out a different doctor.
Here's what the Hematologist at Baylor says:
Subject: Factor V Leiden
Q: I have had two miscarriages this year (6 and 10 weeks). My ob/gyn ordered a lot of tests and a chromosomal analysis after my second miscarriage. My chromosomal analysis came back completely normal but she said that I have factor V Leiden Mutation (hetero). I was told that this may have caused both of my miscarriages. My doctor said that I needed to see a hematologist who would determine whether I needed to take children's aspirin or a blood thinner the next time I get pregnant. I was referred to a hematologist who emphatically told me that FVL did not cause my miscarriages. The hematologist told me that FVL would not cause me any problems until the very end of my pregnancy, if at all. At this point, I was real upset because I didn't know which doctor was right. To make things worse, I later read the literature that the hematologist gave me and it stated that "All patients with a history of unexplained fetal demise would probably be treated". Another handout she gave me stated "If you are factor V Leiden positive and you have never suffered from a clot, you probably do not need any therapy on a routine basis. Protective anticoagulant therapy may be needed is situations where your risk for developing a clots is increased, such as during pregnancy and the post partum period". I would very much appreciate any insight you can offer.
A: Most studies confirm an association between conditions such as like Factor V Leiden and both early and late miscarriages. Given your history, we would recommend injections of the blood thinner Lovenox 40 mg daily throughout pregnancy (and for 2-3 months post-delivery). Dr. Lawrence Rice or Dr. Kelty Baker would be happy to see you for a consultation, if you wish. The appointment number for both Dr. Rice and Dr. Baker is 713-394-3800.
References: Kupferminc, NEJM 340:9-13,1999 or Walker, J Clin Pathol 53:573-580, 2000.
Q: I recently tested positive for Factor V Leiden, heterozygous. I am EXTREMELY curious about the relationship b/w FVL and late term pregnancy loss. Any information you could provide would be greatly appreciated. I have done a tremendous amt of research on this and all the research says there is a correlation, however, I have heard mixed theories.
I would also like to know your advice on treatment for a subsequent pregnancy if one had suffered a late term loss (lost 10 lb. baby girl at 38 weeks gestation.) I am finding there is also a very gray area on this topic.
I have never suffered any medical problems. I am active and healthy.
A: Most studies confirm an association between thrombophilia (increased incidence of blood clotting such as seen with Factor V Leiden) and both early and late miscarriages. As mentioned above, our expert would recommend treatment with the blood thinner Lovenox 40 mg by injection daily throughout pregnancy and for 2-3 months after delivery.
Wednesday, October 26, 2011
Necessity of treatment for recurrent loss w/ FVL
It's almost impossible to find large, randomized studies on factor v leiden and pregnancy. The stakes are high and it is difficult for researchers to recruit. So, even though these studies are small, for those of us who are looking for answers, they are very valuable.
2001 Oxford Journal Human Reproduction showed that the live birth rate for women with FVL AND a history of losses (3 losses or a 2nd or 3rd trimester loss) was even lower than the 49% birth rate for women with similar histories but who had normal Factor V genotype. This study observed pregnancies with no treatment beyond standard prenatal care.
Luckily, treating a clotting disorder can significantly improve the outcomes for women with late or recurrent losses. 2011 Habenox study showed that women with recurrent loss and diagnosed thromobophilia (FVL, Prothrombin, Protein S or C deficiencies, etc.) had approximately 70% live birth rate when treated with 40 mg enoxaparin/lovenox and/or 80mg aspirin daily. Most (90%) of the losses that did occur were 1st trimester miscarriages.
Unfortunately, not all doctors will treat recurrent loss with blood thinners. A study cited by an ACOG practice bulletin of "low risk" women (i.e. no history of recurrent loss) showed that the 134 women with FVL had comparable live birth rates to other low-risk women. For this reason, ACOG does not recommend treating women with FVL unless there is a history of clots. FVL can be very sporadic in it's effects. I had 3 full term births before my diagnosis. But, if it has caused late or multiple losses for a particular mother, the odds are stacked against her for future pregnancies without treating the FVL. (Note: Studies showing the benefits of treatment for recurrent loss are discounted by the ACOG bulletin. Thankfully, many good OBs & Maternal-Fetal medicine specialists DO treat these high-risk populations instead of sitting on their haunches waiting for a large, randomized, double-blind study verifying what more moderately sized studies have already shown- that treating the clotting disorder reduces the risk of further losses.) If you've had multiple or late losses and your doctor cites this practice bulletin as the reason you shouldn't treat your genetic thrombophilia, please find a new doctor.
2001 Oxford Journal Human Reproduction showed that the live birth rate for women with FVL AND a history of losses (3 losses or a 2nd or 3rd trimester loss) was even lower than the 49% birth rate for women with similar histories but who had normal Factor V genotype. This study observed pregnancies with no treatment beyond standard prenatal care.
Luckily, treating a clotting disorder can significantly improve the outcomes for women with late or recurrent losses. 2011 Habenox study showed that women with recurrent loss and diagnosed thromobophilia (FVL, Prothrombin, Protein S or C deficiencies, etc.) had approximately 70% live birth rate when treated with 40 mg enoxaparin/lovenox and/or 80mg aspirin daily. Most (90%) of the losses that did occur were 1st trimester miscarriages.
Unfortunately, not all doctors will treat recurrent loss with blood thinners. A study cited by an ACOG practice bulletin of "low risk" women (i.e. no history of recurrent loss) showed that the 134 women with FVL had comparable live birth rates to other low-risk women. For this reason, ACOG does not recommend treating women with FVL unless there is a history of clots. FVL can be very sporadic in it's effects. I had 3 full term births before my diagnosis. But, if it has caused late or multiple losses for a particular mother, the odds are stacked against her for future pregnancies without treating the FVL. (Note: Studies showing the benefits of treatment for recurrent loss are discounted by the ACOG bulletin. Thankfully, many good OBs & Maternal-Fetal medicine specialists DO treat these high-risk populations instead of sitting on their haunches waiting for a large, randomized, double-blind study verifying what more moderately sized studies have already shown- that treating the clotting disorder reduces the risk of further losses.) If you've had multiple or late losses and your doctor cites this practice bulletin as the reason you shouldn't treat your genetic thrombophilia, please find a new doctor.
Wednesday, June 22, 2011
Frequently asked questions
Q: What is Factor V Leiden?
Factor V Leiden (FVL) is a genetic mutation that makes you more prone to have blood clots. It is not all that uncommon in caucasians (between 5-15% of the population may have it) but it does not generally cause problems so most people who have it are unaware. It's usually discovered if a person or a close family member has deep vein thrombosis (DVT) or late or recurrent pregnancy loss.
Q: What health implications are there for those with FVL?
You should reduce your risk of forming clots by working on the risk factors that can be changed. You should not smoke, should exercise regularly & watch your weight. You should never take hormone supplements (birth control or hormone replacement therapies) that contain estrogen. If you are traveling or otherwise sitting for long periods of time, you should periodically take breaks to move around as much as possible. You should notify your doctor if you ever have surgery so you can be treated prophylactically with blood thinners. It is important to always stay well hydrated.
Q: Does FVL only affect women?
No, men are just as likely as women to have the mutation. However, many women are diagnosed in connection with a pregnancy because pregnancy is a hypercoagulative state. The body forms clots more easily when pregnant as a natural protection against hemorrhage.
Q: What is the treatment for FVL in pregnancy?
Many women with FVL have healthy pregnancies without treatment (I had 3 full-term babies before I had multiple miscarriages & testing). However, for those with a history of clots or pregnancy loss, most doctors recommend low-dose aspirin therapy and/or daily injections of heparin or lovenox. For patients without a history of clots or pregnancy loss who test positive for the mutation after a family member is diagnosed may be advised to take low dose aspirin, but opinions vary.
Q: I've heard pregnant women aren't supposed to take aspirin?
Generally they are not. Aspirin is a blood thinner and can cause bleeding problems. But, for pregnant women with FVL who clot too much, blood thinners help return the body to a state of equilibrium. Women should not take aspirin to prevent miscarriage unless their doctor has diagnosed or strongly suspects (due to late or recurrent pregnancy loss) that there is a clotting issue.
Q: How is FVL diagnosed?
Specific blood tests can reveal this mutation. FVL is also known as "Activated Protein C resistance". You doctor may simply order the APC resistance test or may order DNA analysis. The DNA test is slightly more accurate (about 2% of APC resistance is not caused by genes) but takes slightly longer to receive results (usually 7-10 day wait).
Factor V Leiden (FVL) is a genetic mutation that makes you more prone to have blood clots. It is not all that uncommon in caucasians (between 5-15% of the population may have it) but it does not generally cause problems so most people who have it are unaware. It's usually discovered if a person or a close family member has deep vein thrombosis (DVT) or late or recurrent pregnancy loss.
Q: What health implications are there for those with FVL?
You should reduce your risk of forming clots by working on the risk factors that can be changed. You should not smoke, should exercise regularly & watch your weight. You should never take hormone supplements (birth control or hormone replacement therapies) that contain estrogen. If you are traveling or otherwise sitting for long periods of time, you should periodically take breaks to move around as much as possible. You should notify your doctor if you ever have surgery so you can be treated prophylactically with blood thinners. It is important to always stay well hydrated.
Q: Does FVL only affect women?
No, men are just as likely as women to have the mutation. However, many women are diagnosed in connection with a pregnancy because pregnancy is a hypercoagulative state. The body forms clots more easily when pregnant as a natural protection against hemorrhage.
Q: What is the treatment for FVL in pregnancy?
Many women with FVL have healthy pregnancies without treatment (I had 3 full-term babies before I had multiple miscarriages & testing). However, for those with a history of clots or pregnancy loss, most doctors recommend low-dose aspirin therapy and/or daily injections of heparin or lovenox. For patients without a history of clots or pregnancy loss who test positive for the mutation after a family member is diagnosed may be advised to take low dose aspirin, but opinions vary.
Q: I've heard pregnant women aren't supposed to take aspirin?
Generally they are not. Aspirin is a blood thinner and can cause bleeding problems. But, for pregnant women with FVL who clot too much, blood thinners help return the body to a state of equilibrium. Women should not take aspirin to prevent miscarriage unless their doctor has diagnosed or strongly suspects (due to late or recurrent pregnancy loss) that there is a clotting issue.
Q: How is FVL diagnosed?
Specific blood tests can reveal this mutation. FVL is also known as "Activated Protein C resistance". You doctor may simply order the APC resistance test or may order DNA analysis. The DNA test is slightly more accurate (about 2% of APC resistance is not caused by genes) but takes slightly longer to receive results (usually 7-10 day wait).
Monday, June 20, 2011
Mother of Hope
We had our 1st baby while my husband & I were in law school. I think most of our classmates thought we were irresponsible or crazy (or both!) to have a child while still impoverished students. We had been married 3 years. We were thrilled to welcome a healthy little boy! And he WAS little...5lb.7oz. He got a special mention at my graduation the next spring. Three years later, we had a little girl. We loved being parents.
After 2 healthy pregnancies & uncomplicated deliveries, we felt confident enough to see a CPM (homebirth midwife) for our 3rd pregnancy. Unfortunately, I started bleeding when I was 9 or 10 weeks. (I have irregular cycles, so due date isn't usually established until the baby is measured in the 1st ultrasound.) I went in for an ultrasound which revealed that the baby had stopped growing a few weeks earlier. But, miscarriages are common and although we grieved the loss, we didn't think that anything was amiss. My body had already proven it could carry healthy babies to term. And about a year later, it proved it for the 3rd time. We loved our homebirth experience & loved that our little family was growing.
Last year, we suffered our 2nd miscarriage. That was much tougher than the 1st loss. At a routine appointment in the 2nd trimester, we discovered that the heart was no longer beating. We chose to wait for my body release the pregnancy naturally. Five days after the appointment, I started bleeding. My water broke & I hurried to the bathroom & caught the baby. We named him James because we liked the lullaby "Sweet Baby James". We had him creamated. We followed up with an OB, but no testing for causes was recommended & we didn't push for any.
About a year after we delivered James, we decided to try again & hope for the best. Things seemed fine. I had a little spotting and went in for an ultrasound. We saw a heartbeat inside our wiggly baby & felt reassured. But, a couple weeks later I started bleeding again- heavier this time. The midwife listened with a doppler & found a nice strong 170 heartbeat. Early the next morning my water broke. The placenta came out before the baby, so we think there was placental abruption. I was 14 weeks. She measured 5inches long. We named her Hope. Our OB did a lot of testing after that. They found a 7cm fibroid near my fundus & lots of ovarian cysts. But, the OB & the Perinatologist are confident that the Factor V Leiden which they found I am heterogyous for is the primary reason I've had late miscarriages.
We'd like to have another baby, but with our history, we are pretty anxious about it. I wanted to start this blog to share my story, learn about other women's experiences, & to develop a resource for those looking for answers about FVL & pregnancy. My main objective is to lend support and offer information to others, so please share your story in the comments.
After 2 healthy pregnancies & uncomplicated deliveries, we felt confident enough to see a CPM (homebirth midwife) for our 3rd pregnancy. Unfortunately, I started bleeding when I was 9 or 10 weeks. (I have irregular cycles, so due date isn't usually established until the baby is measured in the 1st ultrasound.) I went in for an ultrasound which revealed that the baby had stopped growing a few weeks earlier. But, miscarriages are common and although we grieved the loss, we didn't think that anything was amiss. My body had already proven it could carry healthy babies to term. And about a year later, it proved it for the 3rd time. We loved our homebirth experience & loved that our little family was growing.
Last year, we suffered our 2nd miscarriage. That was much tougher than the 1st loss. At a routine appointment in the 2nd trimester, we discovered that the heart was no longer beating. We chose to wait for my body release the pregnancy naturally. Five days after the appointment, I started bleeding. My water broke & I hurried to the bathroom & caught the baby. We named him James because we liked the lullaby "Sweet Baby James". We had him creamated. We followed up with an OB, but no testing for causes was recommended & we didn't push for any.
About a year after we delivered James, we decided to try again & hope for the best. Things seemed fine. I had a little spotting and went in for an ultrasound. We saw a heartbeat inside our wiggly baby & felt reassured. But, a couple weeks later I started bleeding again- heavier this time. The midwife listened with a doppler & found a nice strong 170 heartbeat. Early the next morning my water broke. The placenta came out before the baby, so we think there was placental abruption. I was 14 weeks. She measured 5inches long. We named her Hope. Our OB did a lot of testing after that. They found a 7cm fibroid near my fundus & lots of ovarian cysts. But, the OB & the Perinatologist are confident that the Factor V Leiden which they found I am heterogyous for is the primary reason I've had late miscarriages.
We'd like to have another baby, but with our history, we are pretty anxious about it. I wanted to start this blog to share my story, learn about other women's experiences, & to develop a resource for those looking for answers about FVL & pregnancy. My main objective is to lend support and offer information to others, so please share your story in the comments.
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