Factor V Leiden - Doctor's disagree and very worried

[autumnx]

I'm 27 weeks pregnant. I was diagnosed with hetero Factor V Leiden after 3 first trimester miscarriages. For this pregnancy, I was advised to take 81mg of baby aspirin a day as a precaution. I did have a small subchoronic hematoma that healed itself in the first trimester. I never had a blood clot and neither has my mom who I inherited it from. I went to a hematologist for a second opinion who then suggested Lovenox and referred me to the Perinatal Center/MFM. I met with their team who were strongly against it. They would not even consider it for me. I was kind of hoping they would, especially for the third trimester, but they just don't think I need it. I'm having a lot of anxiety because of this. Just wondering if anyone has any input.

 

[Future Mama]

I was diagnosed with antiphospholipid syndrome which is also a clotting disorder. I was put on baby aspirin and daily lovenox injections which I started the day I found out I was pregnant and will continue for 6-8 weeks post partum. I think that most clotting disorders are linked to first trimester losses so if your doctors are against it, it must be because you're not at risk for losing the baby? I'm sorry I'm not much help but this is all still new to me. My dr is doing ultrasounds twice a week starting next week (30 wks pregnant) for extra monitoring so if there is an issue I can be induced immediately. Is your dr doing this?

 

[autumnx]

I was diagnosed with antiphospholipid syndrome which is also a clotting disorder. I was put on baby aspirin and daily lovenox injections which I started the day I found out I was pregnant and will continue for 6-8 weeks post partum. I think that most clotting disorders are linked to first trimester losses so if your doctors are against it, it must be because you're not at risk for losing the baby? I'm sorry I'm not much help but this is all still new to me. My dr is doing ultrasounds twice a week starting next week (30 wks pregnant) for extra monitoring so if there is an issue I can be induced immediately. Is your dr doing this?

I will be seen every two weeks. However, I know yours is different. They said if I was homo factor v or had aps then id be on it.

 

[Tigerlily01]

Sorry, I don't have any experience, but if the hematologist referred you to MFM that implies to me that they have more experience with this in pregnancy, so I'd be inclined to follow their advice?

 

[autumnx]

Sorry, I don't have any experience, but if the hematologist referred you to MFM that implies to me that they have more experience with this in pregnancy, so I'd be inclined to follow their advice?

That makes sense. When I went in he asked if I was seen by them and I said yes but that I wanted his opinion. He suggested Lovenox and would prescribe me it but I need to go and talk to them about what we talked about. Kinda like they need to make the decision. When I talked to the MFM, he said they're watching out for the baby whereas hematology is more me. That's what I want though. My daughter comes first.

 

[petitpas]

Autumn, I know you say your daughter comes first but that doesn't mean you can't be looked after, too

I suppose you are in the US and I don't know the guidelines there but here are the UK guidelines:
https://www.rcog.org.uk/womens-health/clinical-guidance/reducing-risk-of-thrombosis-greentop37a

If you open the document and look at page four you'll see that you fall into the middle (amber) risk category as you have known thrombophilia but no previous history of VTE (venous thromboembolism, I.e. a history of clots). This means you should be considered for low molecular weight heparin (lovenox or similar) in addition to aspirin but it might not be absolutely necessary.
If you find that you have another risk factor such as being overweight, over 35, or a smoker then maybe you ought to push for more. If you don't have further risk factors and are happy to proceed as is then educate yourself on the symptoms of a dvt or pulmonary embolism so that you can recognise them early.
Without knowing more about your individual case it sounds like neither party was entirely wrong with their opinion
One thing I would stress, though, especially if you end up having a c-section, is to have a risk assessment the. You should go on the injections for at least a week after! It's a small price to pay for your safety and the risk is quite high at that time.

I have FVL and a history of clotting as well as recurrent miscarriage. Among other things, I take baby aspirin and heparin injections every day up to six weeks after giving birth. It worked well with my son (planned c-section) and I'm hoping it will work well again. A lot of women take lovenox or similar in pregnancy so there is quite a track record.

 

[autumnx]

Autumn, I know you say your daughter comes first but that doesn't mean you can't be looked after, too

I suppose you are in the US and I don't know the guidelines there but here are the UK guidelines:
https://www.rcog.org.uk/womens-health/clinical-guidance/reducing-risk-of-thrombosis-greentop37a

If you open the document and look at page four you'll see that you fall into the middle (amber) risk category as you have known thrombophilia but no previous history of VTE (venous thromboembolism, I.e. a history of clots). This means you should be considered for low molecular weight heparin (lovenox or similar) in addition to aspirin but it might not be absolutely necessary.
If you find that you have another risk factor such as being overweight, over 35, or a smoker then maybe you ought to push for more. If you don't have further risk factors and are happy to proceed as is then educate yourself on the symptoms of a dvt or pulmonary embolism so that you can recognise them early.
Without knowing more about your individual case it sounds like neither party was entirely wrong with their opinion
One thing I would stress, though, especially if you end up having a c-section, is to have a risk assessment the. You should go on the injections for at least a week after! It's a small price to pay for your safety and the risk is quite high at that time.

I have FVL and a history of clotting as well as recurrent miscarriage. Among other things, I take baby aspirin and heparin injections every day up to six weeks after giving birth. It worked well with my son (planned c-section) and I'm hoping it will work well again. A lot of women take lovenox or similar in pregnancy so there is quite a track record.

I am in the US. There is a similar bulletin from the same year actually, but our practice doesn't look at anything prior to 2010. I'm 24 and started with an underweight BMI prior to pregnancy. I did have a bleed earlier in pregnancy (12 weeks) that was thought to be a subchoronic hematoma but I'm not sure that has anything to do with their reasoning.

 

[krisum]

I also have the heyerozygote version of FVL. My medical care team along with myself all made the very informed decision to not take any prophylactic anticoagulants during my pregnancy as I am still considered low risk even though I have the gene. I am at higher risk than the normal pregnant women without. I think they put me at a 1/200 risk of developing a clot during pregnancy. To me that risk was low enough to not take the risk of being on blood thinners. Though if I have a c-section I will be put on injections for. 6 weeks post parturition.

I had one early loss. No previous dvt and no immediate family member with a clot.

 

[autumnx]

I also have the heyerozygote version of FVL. My medical care team along with myself all made the very informed decision to not take any prophylactic anticoagulants during my pregnancy as I am still considered low risk even though I have the gene. I am at higher risk than the normal pregnant women without. I think they put me at a 1/200 risk of developing a clot during pregnancy. To me that risk was low enough to not take the risk of being on blood thinners. Though if I have a c-section I will be put on injections for. 6 weeks post parturition.

I had one early loss. No previous dvt and no immediate family member with a clot.

Did they talk to you about risks with later losses? They said the same for me. 1% risk of having a clot myself, however, stillbirth risks are unclear. A RE I saw believed that first trimester losses are not attributed to FVL but second/third could be.