Factor V Leiden

I have a question for you ladies....this is a long one, I'm sorry for that. But I just discovered something that made me go "hmmm".

My older sister had some issues with intense pain and they could not find a reason for it about a year and a half ago. After many tests and many dead ends, they found out accidentally that she had a blood clotting disorder called Factor V Leiden. The "v" is the roman numeral 5. So Factor Five Leiden disorder. She recently mentioned to her doc that I was pregnant and carrying twins and her doc said I needed to be checked for this.

I did some reading online (I know! Big no-no!) and read that having this can cause miscarriages (I've had two) and an elevated risk of pre-eclampsia (which I had with my only full term pregnancy). I also read that in children it can be misdiagnosed as Juvenile Arthritis because it can cause extremely painful, swollen joints and elevated ESR testing. As a child I was diagnosed with Juvenile Rheumatoid Arthritis and had to have Sed Rates drawn for YEARS on a weekly basis. Maybe I had this blood clotting disorder instead of arthritis?

Anyways....I called my doc to see if they would be willing to test me for it and so far no one has called me back. I have an appointment with her on Monday but I don't really see her agreeing to this crazy test. Should I really push for her to do it? I mean, am I really in danger of having something bad happen or would it be more for my own morbid curiosity to have an answer?

Thanks!

 

I would call again and ask for sure. It is a clotting disorder. I have Protein S defficiency which is also a clotting disorder and I have to take baby asprin for it. I have lost 4 other babies prior to my current pregnancy (all before 9wks though) and was able to carry my daughter full term I think with the help of the asprin therapy.

 

I would push to get it done especially if there is something out there that you can take. :hug: :hug: Keep us posted (and no more googling!! :acute: )

 

I agree with people.. it's better to be checked out than not. I have a protein S deficiency and am taking Lovenox for it twice a day. I hope you get some answers!

 

Wow, interesting. I would definitely push for it. Is it just a blood test? If so, I can't imagine why they would deny it.

 

As far as I know it is just a blood test. I have an appointment with her on Monday so I'm going to ask her about it. Her nurse never called me back today, but the way I see it...it's my money paying for the test so I don't see how they can deny it. And if the OB says no, I'll just go to my Peri appointment the week after and ask him.

Thanks for all the answers.

To Kerina....does the lovenox affect you in any way? I've read that that is typically the drug they prescribe during pregnancy. Do you have to give yourself injections or do you take it orally?

Thanks so much for all the responses!

 

I would push for it too. :hug:

 

Thanks to everyone for all your answers and input. I have a question....and I know this is putting the cart before the donkey. But bear with me. If something happens I have this disorder, then technically I could pass it on to my children, correct? I have a 2 1/2 year old son and he was born with this hellacious....spot... I guess is the only word I can think of to call it on his shoulder. They finally determined it to be a superficial blood clot. They never gave us any rhyme or reason for it and when he was about 9 months old it had finally started to dissipate and you could tell it was absorbing. They did surgery to make sure it wasn't a tumor or anything since it had been there for so long and the final word was "nope nothing but old blood".

Soo.....I wonder if my son has it? http://i84.photobucket.com/albums/k16/whenyougonnaeatthatpickle/kaleb/102_0071.jpg This is a link to a picture of his shoulder at about 2 or 3 weeks old. Anybody ever seen anything like that before? This one is a pic shortly before his surgery...you can see how its all wrinkly and how the clot has gone down. http://i84.photobucket.com/albums/k16/whenyougonnaeatthatpickle/kaleb/DSC02302.jpg

oh! And by the way....I'm not freaking myself out anymore. I'm a medical assistant and am actually pretty fascinated by all this at this point and my learning hat is on. So I'm not sitting over here biting my nails, but a light bulb went on when I thought about my DS.

Anyways...thanks guys for listening to my rambling!

 

I don't normally read this forum, but I'm glad I clicked on it now. I have Factor V Leiden. I'd definitely ask to be tested as it puts you at an increased risk of blood clots if you do have it. Pregnancy is already a hypercoagulative state and when you add in the weight of twins in the pelvis restricting blood flow from the legs back up to the heart and a genetic clotting disorder you have the perfect storm for a clot to occur. The test is a simple blood test but it does take a few weeks for results to come back.

I wasn't aware that I had it until I developed a pulmonary embolism and deep vein thrombosis (clots in the lung and groin) during the 3rd trimester of my twin pregnancy. That was a really scary experience. I had to spend a few nights in the ICU on a CPAP breathing machine, I was drugged up on demerol because the pain was so bad when I breathed, and in order to find the clots I had to have a radioactive lung scan and a CT scan. Not an experience I'd wish on anymore! I had to take Lovenox twice a day until I delivered, then I was on Coumadin for 6 months postpartum. I've been med-free and clot-free since then. Lovenox is a sub-cutaneous injection that you give yourself. The needle stick is not painful, but the medicine does sting a little. Coumadin cannot be used while pg due to birth defects.

Living with FVL while not being pregnant is not bad at all. I know I am at an elevated risk for clots so I make sure to get up and walk during long flights and car rides. I also cannot take any hormonal birth control containing estrogen. Some people with FVL never clot, others clot so much they require daily Coumadin for life. Everyone is impacted differently.

Being pg with a clotting disorder is a bit of an unknown. Some doctors will always prescribe Lovenox as a precaution even without a history of clotting. Others will only use Lovenox if the patient has clotted before. Some will keep moms on Lovenox until 39 weeks and then induce to reduce the risk of bleeding problems during labor. Others will switch moms to heparin around 36 weeks as heparin leaves the body quicker than Lovenox. Of course with twins, odds are you won't make it to 36 or 39 weeks anyway! I went into labor at 34 weeks while on Lovenox. I couldn't get my epidural until 24 hours after my last Lovenox dose and by that time I was 8.5 cm dilated. I ended up with a c-section and had some complications as I was started on IV heparin shortly after the surgery which caused some active bleeding inside my incision. That sucked, but thankfully I didn't clot which is always a risk with surgery even when the mom doesnt have FVL.

As far as testing your DS, that is up to you. I have not had my children tested. When my daughter reaches reproductive age, I will probably test her. I don't want her using hormonal birth control unless she knows for certain she does not have this disorder.

 

Thank you so much for your response! I'm going to speak with my doc about it at my appointment on Monday. Here's to crossing my fingers I don't have it. But both of my sisters have tested positive for it now. Maybe I'll be the lucky odd one out.

 

Okay so my doc drew a bunch of labs (15 vials!!!!) to test for a ton of things that can cause thrombophilia. Today when I saw her she said that all my labs came back normal except my factor V level was low, but that the lab failed to do the actual Factor V Leiden test. She gave me a copy of the labs and when I looked through them the only one that was low was the Protein S activity.

For those of you that have deficiencies or factor v or anything like it, what does the low protein s level have to do with Factor V?

 

+ UJ U UU U UYRRIFV[Y]G -\U]G0T
KKU, G

+ UJ U UU U UYRRIFV[Y]G -\U]G0T
KKU, G

+ UJ U UU U UYRRIFV[Y]G -\U]G0T
KKU, G

+ UJ U UU U UYRRIFV[Y]G -\U]G0T
KKU, G

 

I dont have Factor V Leiden, but rather Factor VIII deficiency---my blood does not clot enough (it is remotely related to hemophilia). It is given to me in a percentage---I am usually within 3-4% points from past blood draws. That said, when pregnant---my percentage was higher than my non=pregnant rate.

I dont know anything about Protein levels.

I would get checked and find out your exact levels. Also have them check your PTT/PT times (blood clotting times)...both the individual rates and the overall rate. My overall rate is find, but both the individual rates are off (one is high one is low).

Ask to see a hematologist---as least as a consult. They can run more specific testing and give you advice on genetic/pregnancy/long term care for anything that the test come up.

If you have ANY bleeding issue, you would be high risk and should be watched by both a PERI and a hematologist. My deficency only is a major issue if I have surgery or if I had a trauma---or pregnancy. If we had not known about it, I may have bled excessively during my C-Section and/or bled post delivery. You may need special medication and/or be treated differently. If anything comes up, have your children checked. Both my DDs have normal Factor VIII levels- it is important to know for medical reasons (surgery, trauma, etc). There are some common medications that should be avoided if you have a bleeding disorder ( For example:I cant take Ibprofin or Advil)

I hope you get some answers soon!

 

Protein S levels are always low in pregnant women. That's why only the DNA tests for the actual genetic disorders are accurate during pregnancy. It sounds like your OB probably isn't well versed enough to be handling this for you. (Nothing against the OB. Most aren't able to handle diagnosing bleeding disorders!) I'd get in to see a hematologist to get the right labs run and to get them interpreted accurately.

 

The Lovenox or Heperain (are the two blood thinners that are used during pregnancy) both are shots. So yes, I give myself shots twice daily. The only "side effect" I seem to have is hitting vessels from time to time and having pooling of blood under the skin in a few areas and bruises.

One good side effect at least for me was along with my BP meds it brought down my BP. I had asked if that was a possibility and the peri who's well versed in clotting disorders said it wouldn't. When I told her about it she said she was glad it was helping but not supposed to be part of the remedy.

The downside is I'm now starting to "fill out" and having a hard time finding spots so I can just imagine what it'll be like in a few weeks.

I agree with people - sounds like you should go to a specialist and get more answers!

 

I had the actual Factor V test done today. My doc's office doesn't have a lab in it so I couldn't get it done yesterday (it was already 5 by the time I left her office). I went this AM and they drew a couple of vials. Said it should only be a couple of days before the doc's office has it. So we'll see!

 

I also have Activated Protein C deficiency and have had a DVT (blood clot) in the past while on birth control. During my pregnancy, my doctor has put me on Daltaperin (blood thinner) that is injected once per day. My sister was also tested for this disorder and the results were negative. It is important that anyone with a family history of a blood clotting disorder be tested prior to going on any birth controls containing estrogen. As far as we know, none of our family has had this disorder and our hematologist has said that is is a recessive gene and will not necessarily be passed down to my children. Hope this info helps and even if you test positive, don`t worry, since the best thing is to get treatment now.

 

So I had my appointment with the Peri today. It turns out I have heterozygous Factor V Leiden. Which means I got it from one parent, not both. Given my history of pre-eclampsia, miscarriage and high blood pressure and my family history of my father having high blood pressure and having had 2 strokes by the age of 62 he is going to put me on baby aspirin daily. He said he doesn't want to go to taking anything prescription yet.

So not so great that I have it, but good to know and very happy to not be having to give myself shots as some PP have had to do.

 

:hug: I'm sorry you found out you have heterozygous Factor V Leiden. But like you said it is good to know. I'm glad you have some answers. :good: