Factor V Leiden

AnnieMac2

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Does anyone have this? Did your doctor put you on Warfarin or a preventative aspirin regimen or something? What was your experience?

I had a first trimester miscarriage last month (first pregnancy) and got the lab work back today. I know it's not an ultra severe condition, but I'm not getting very far on Google as far as knowing the precautions, and I'm nervous after the miscarriage. Does this warrant a high-risk doctor? My OB was very laissez-faire about it and I feel uninformed. And he sort of rushed me off the phone and I didn't catch some of what he said.

Thank you so much!
 
I don't have Factor V Leiden, but anti-thrombin III deficiency, which is another one of the thrombophilias.

I am on daily injections of low molecular weight heparin (Fragmin) and I also take a daily dose of 81mg aspirin.
 
I have Factor V as well. I'm not pregnant yet (currently TTC), but my OB already plans to refer me to a high-risk OB. Are you Hetero or Homozygous? According to my OB and the research I've done (I'm a pharmacist, so I spend a lot of time reading medical journals and studies :blush:), usually for heterozygous they will just monitor or do low-dose aspirin. However, given your history of a loss, it seems that treatment may be warranted. Warfarin is contraindicated in pregnancy so do NOT take it. The typical treatment would be lovenox injections daily.

I'm heterozygous. I was also recently diagnosed with Ulcerative Colitis, which also increases the risk of clots. I was referred to a hematologist, who is going to be joining my OB & high-risk OB & GI dr. to form a "medical team" once I get pregnant and they will all be collaborating on my treatment. My hematologist feels more comfortable with me going on lovenox. Not looking forward to it, but I'd much rather face daily injections than the increased risk of fetal loss.

I would definitely push the issue with your OB and consider scheduling a visit with a hematologist to discuss your case. Hope that helps!
 
Hi Annie,

I'm so sorry about your loss. I don't have Factor V def, but I'm homozygous for MTHFR and Lupus Anticoagulant Antibody positive. Unfortunately I didn't find out until after 2 miscarriages in the last 6 months. I started on Lovenox injections just about a week ago and will have to be on it while TTC and during pregnancy. This is some basic information on Factor V Leiden that comes from a trusted website (I work in the medical field and I use it all the time.) And like Lotus said, treatment really depends on if you have 1 or 2 copies of the bad gene for Factor V Leiden deficiency. I hope everything works out for you!

What is factor V Leiden? — Factor V Leiden is a condition that makes blood more likely to form clots in the legs, lungs, and other parts of the body.

Blood clots can be dangerous. If a clot forms inside a blood vessel, it can clog the vessel and keep blood from getting where it needs to go. If a clot travels to the lungs, it can cause breathing problems or even death.

Factor V Leiden is a life-long condition that people are born with. It is caused by an abnormal gene. Parents pass the abnormal gene to their child. Often, parents might not know they have the abnormal gene because they don’t have any symptoms of the condition.

What are the symptoms of factor V Leiden? — Most people with factor V Leiden never have any symptoms. The condition only causes symptoms if a blood clot forms, and that is unusual. When clots do occur, they can cause:

●Warmth, redness, pain, and swelling in the leg – These are symptoms of a condition called “deep vein thrombosis” or “DVT.” This is a blood clot in a vein deep inside the leg (figure 1).
●Breathing problems, sharp chest pain, coughing, and fast heartbeat – These are symptoms of a condition called “pulmonary embolism.” This is a blood clot in the lungs.
●Headache, trouble moving or talking, and seizures – These can be symptoms of a type of stroke caused by factor V Leiden.
Should I see a doctor or nurse? — See your doctor or nurse right away if you think you might have a blood clot in your leg. If you have symptoms of a stroke or a blood clot in the lungs, call for an ambulance (in the US and Canada, dial 9-1-1). These conditions are very serious and can be life-threatening.

Is there a test for factor V Leiden? — Yes. If your doctor or nurse thinks you might have factor V Leiden, he or she can order a blood test to look for the abnormal gene.

How is factor V Leiden treated? — If factor V Leiden causes a blood clot, the main treatment is medicines that get rid of clots or keep them from getting bigger. Some of these medicines come in shots and others come in pills. Doctors sometimes do surgery to remove a blood clot in the lungs or help with brain problems from a stroke.

People who have had a blood clot usually take a medicine in pill form to prevent clots for at least 3 months after the clot is found. This medicine helps keep new blood clots from forming. It is important because people who have one clot often have another later on.

Is there anything I can do to prevent blood clots? — Yes. People sometimes get clots because they have been sitting still for too long. Taking a long trip raises your risk of blood clots, especially if you fly. To help prevent a clot on a long plane trip, you can:

●Stand up and walk around every hour or 2
●Not smoke just before a plane trip
●Wear loose, comfortable clothes
●Change your sitting position and move your legs and feet often
●Drink plenty of fluids
●Wear knee-high compression stockings
●Avoid alcohol and medicines that make you sleepy – These can keep you from moving around enough.
Women with factor V Leiden should ask a doctor or nurse if it is safe to take birth control pills. The hormones in these pills raise the risk of blood clots. This can be dangerous for women with factor V Leiden.

What if I want to get pregnant or need surgery? — If you want to get pregnant or need surgery, tell your doctor or nurse if:

●You have had a blood clot
●Your father, mother, brother, or sister had a blood clot before age 50
If the doctor or nurse thinks you might have factor V Leiden, he or she can order a blood test to look for it. If you have it, you might need to take medicine to help prevent blood clots and other problems.
 
Marthea, I'm so sorry you suffered through 2 losses. I need to find out if I have homo- or hetero-. When I spoke with the doctor I didn't know enough to ask and he was just very uninformative and rushed, which is too bad since I usually like his bedside manner. I freaking HATE having to wait for multiple miscarriages for testing. My doc said we'd do more aggressive intervention if I have another. If it's non-invasive, why wouldn't we just save me the heartache if there's any chance of preventing one?

Lotus - thank you for the info. Do you have homo and that's why you were referred to high-risk? I made an appointment for a 3rd opinion at a practice that's known for a high-risk tx. I don't want to be ageist, but my doc and a 2nd doc I spoke with (informally - he's a client of my husband's) are these old school guys near retirement. I appreciate their experience, but I was a bit skeptical of another piece of advice, which I know seems to be unfounded in more recent research. I didn't appreciate the just-listen-to-me-little-lady vibe - I'm more than capable of comprehending what they're talking about and I expect solid explanations when I ask a question.

Thanks to all 3 of you for taking time to respond. It means a lot. And good luck in future pregnancies!
 
I hope you've got that other opinion and feel properly supported. If they agree with waiting for another loss it may be because the benefits do not out weigh the risks (like bleeding), maybe you could compromise with them and ask them to monitor your factor x (clotting stuff) whilst pregnant? It gets too sticky and they put you on meds?

I've factor v and mthfr, and I've read a lot over the years even hetro sometimes it affects your pregnancy but they're not sure why some are affected by hetro FVL and some aren't. I am currently on a high dose of clexane (heparin) and 150mg a day of aspirin but I've been through lots.
 
I was diagnosed with Thrombophelia (PAI-1 4G/5G polymorphism) and Antiphospholipid Antibodies. I've mc'd now twice and had a few chemicals before the diagnosis. I got pregnant this year and am being treated with baby aspirin and twice/day Lovenox. It's done the trick because before this I both couldn't get pregnant abd if I did, I couldn't keep them. It was really frustrating. Getting immunological testing was the best thing we ever did!
 
Congratulations on your pregnancy 2have4kids! That's wonderful. Sorry I missed these last few comments. Thank you everyone for sharing your experiences!
 
If your doctor can ask for blood clot testing, there are several types, I highly recommend it. ie listing what the ladies have on here if you don't know all of the factors that cause blood clotting and then research any other forms. If you have one you may be at risk for others. I was on baby aspirin with the 2 times I miscarried, if you have serious clotting issues baby aspirin won't be enough to protect you and baby. XX
 

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