# Factor 5 V Leiden..



## ElmoBumpToBe

I have known since i was a teenager that im hetorozygous for the factor 5 v leiden. It has never affected me, i just can only take a certain type of contraceptive pill and should take aspirin and wear ted stockings on long haul flights and during the latter stages of pregnancy.

After i had my son i had to have an injection of clexane every day for 6 weeks to avoid me developing a blood clot.

Nobody ever suggested that my sons father be tested so he wasnt.

I now have a new partner and we are expecting a baby, he has been tested and he too is hetorozygous wich means there is a 1 in 4 chance that our baby will be homozygous, which is more serious but we dont know much more than that and there is little on the internet,

Is anyone here hetorozygous? Has a child who is?? Can you shed any light on what we can expect and just how serious it actually is?

Also, where ever i look, women who are hetorozygous like me seem to be taking clexane or aspirin through out the pregnancy yet i am not?? Would taking it through out pregnancy reduce my risk of misscarriage or still birth? x


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## price27

hi

Asking for advice and getting un-biased answers is impossible, especially when asking mothers for their opinions. At the end of the day it is your choice and with help from consultants, doctors, midwives and discussions with your husband, I am sure you will do the 'right' thing!

Anyway here is my history and my biased opinion on what you should do!.....
Unfortunatly my daughter was stillborn last xmas. I did not know I carried the recessive gene for factor 5 v leiden before hand, until a full post mortem was carried out. My daughter was very underweight at 36 weeks gestation, however was measuring fine during routine 20 week scan and antenatal appoints. Her frame was good but unfortunatly she had not put on any meat! My husband and I both believe she must of just been hanging on in there for weeks. I never felt any kicks and didnt know what I was missing given she was my first child. Her being underweight together with many small clots in the placenta, and the fact I am also heterozygous for carrying this gene, allowed my consultant to inform me of possible medication for subsequent pregnancies. May I also add my blood pressure was elevated but not worryingly so and I also had frequent migraines, visual auras too but urine was always fine so pre-eclampsia was ruled out! I have suffered migraines for years even before getting pregnant!

The advice given to me was that asprin should help with some of the issues mentioned above and after 12 weeks gestation, it was my choice to inject clexane (heparin) or not. It was my choice because I am young, active, fit, not overweight or obese and only a carrier for the gene. I originally thought I would say yes only to asprin but as the time neared in this second pregnancy for me to decide on clexane, I opted for a 'yes'! I thought why would I not! Even though I am not classed as high risk for this blood clotting disorder, I thought given the past 12 months I would do anything and everything possible to ensure I can carry my child home and hold him/her in my arms...ALIVE!!!

And so now I am 35 weeks pregnant, approaching the time when I lost my daughter in my last pregnancy just 11 months ago. I can say that injecting every day since 12 weeks gestation has been so easy and this pregnancy has been so different! NO headaches at all! No blood pressure concerns!! Baby has shown amazing growth and is at the top end of all of the scales, so much so that they are keeping an eye on for developing gestational diabetes! I now know what kicks and movements are and what I shouldve been feeling the first time around. I will stop the asprin at 36 weeks and continue the clexane till teh day before I am induced (10th November). I will then continue the clexane after giving birth.

I am so nervous and this week is a big hurdle for me to get over. However, I am hoping the next few weeks go fine and that is thanks to great advice and guidance from my midwife and consultant. The medication has clearly done wonders so far!

At the end of the day it is your choice!! Listen to others but act on your own instincts!


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## petitpas

Hello ElmoB2B,
I am Factor V heterozygous. I was always told that I would be kept an eye on when pregnant, especially with extra growth scans towards the end to keep an eye on clots in the placenta that could be starving the baby. This was even before I had any clots.

Since I have already suffered from clots (DVT and PE) I am at high risk of having further episodes during pregnancy and after giving birth so I need the low molecular weight heparin (e.g. clexane, tinzaparin) shots. I think that generally the advice given is that if you are 'only' heterozygous and have not had any previous clotting events you are not necessarily given the shots. Aspirin, however, is recommended I believe (and in my case, I take both during pregnancy). In any case, you should be seen by consultant due to the risk of placental clots and also because you are at higher risk for pre-eclampsia. Have you got an appointment with an obstetrician yet? If not, you should ask your midwife to arrange one.
The following green top guideline outlines the prevention for thrombosis during pregnancy.
https://www.rcog.org.uk/files/rcog-corp/GT37ReducingRiskThrombo.pdf

It really is best if you can see a consultant as soon as possible and discuss your specific with them. Wave the guideline in the midwife's face if you have to :) (sorry, don't mean to offend any midwives on here as mine is very clued up but you never know)

Wishing you all the best with your pregnancies xxx


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## ElmoBumpToBe

Price27 im so sorry for your loss, cant begin to imagine the heart break, good to hear they are taking good care of you this time around x

Thanks to both of you for your advice. To be honest i feel that where i live i am receiving poor care both this time and with my son. I have seen the consultant, he has not once mentioned that i should be taking aspirin, nore did they when i had my son. 

There has also been no mention of me receiving extra scans toward the end to check for clots etc. Its something i suspect i will have to pay for myself privately.

I injected clexane for 6 weeks after my sons birth and will be doing the same after this baby.

Im of course alot more scared this time because there is the chance that the baby is not only hetorozygous but homozygous and could develop a clot while in the womb.

And although i have had one healthy pregnancy i cant help but feel that i wont be lucky enough to have 2 without any treatment.

Thanks for the guidelines i think i will need them to put in front of the consultant. He didnt even know how many weeks i was, i corrected him while we were there but when i got home and looked at my notes, he has still put me down asw 2 weeks further along than i am!! x


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## ElmoBumpToBe

Well i saw the consultant this morning. This one was much more helpfull and i have come home with 8 weeks worth of clexane injections that i will start taking tonight.

Just have to wait for the appointment with the heamatologist now to find out what it could mean for when the baby is born if he or she IS homozygous x


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## petitpas

Hi Elmo,

I'm glad this consultant was a lot more informed and helpful! I think that for the beginning there won't be too much worry for your child after he/she is born, but in the long term there will be questions of how to prevent anything serious from happening. Even if your child is homozygous you will have a number of years to figure things out (clots are very rare in children) and there are quite a few developments in the pipeline to make long-term blood thinning safer and more comfortable (i.e. less needles, less testing). All in all, I'd say you are all clued up now and it sounds like you are receiving good care xxx


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## ElmoBumpToBe

Hi petitpas, thank you for that, i cant say i knew that clots were very rare in children and that has really put my mind at rest, i had visions of the baby developing a blood clot and dying suddenly, all very frightening as you can imagine!

I think all i can do now is look after myself and look forward to my babies arrival!

xx


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## petitpas

Indeed! Look after yourself and you can deal with the baby's genes later.
If you do want to read up about it, the following website has some statistics about thrombosis incidence in young children with Factor V Leiden:
https://www.stoptheclot.org/documents/FactorVLeiden-lw.pdf

All the best to you! xxx


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## momomom

I am also heterozygous for Factor V Leiden. I went for a consult earlier this year with the high-risk OB and she is going to have me take lovenox for the 2nd and 3rd trimester. I had a placental abruption when I was pregnant with my daughter 11 years ago and a clot was found but they didn't test me until last October after I had a mmc at 12 weeks (the mc was unrelated to the factor V, as the pregnancy itself was high risk because I was having mo/mo twins). 

I'm hoping that the lovenox will help this pregnancy go at least a little smoother!


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## ElmoBumpToBe

momomom I havent heard of lovonox, i presume it is a blood thinner? Glad to hear your going to receive the care you need for this pregnancy hun. Has your partner been tested? x


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## momomom

He hasn't been tested. My doctor recommended he not be tested (especially if there was no history of dvt or anything in his immediate family) because all it would do is make us crazy. :haha: She has a good point, I think!

Lovenox is the american name for clexane, I think.


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## petitpas

Hi momomum, are you taking aspirin, too?


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## ElmoBumpToBe

Im not petitpas, keep wondering wether i should or not.

Momomom your doctor couldnt have been more right, im really not sure why they were so eager to get my oh tested, all it resulted in was upset when we found out he has it too and there is nothing we can do except it made me want the injections to avoid a clot in the baby even though there is no definate evidence that it will help. Nobody every suggested that my ds's father be tested 3 years ago x


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## momomom

I'm not taking aspirin now, but I go to my doctor on the 29th and then I'll have a better idea of what I need to do going forward. I'll keep you updated!

I'm sorry the doctors worried you so much, ElmoBumpToBe. Like pregnant ladies don't have enough to worry about! :dohh:


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## ElmoBumpToBe

Exactly!

I'll keep checking in on this thread, let us know how you get on :) x


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## LandN

hello just wanted to say, that i too have factor 5 leiden, my dad has the double gene so he got it from both his parents, he has a dvt but only got it late on in life, he was fine as a baby, and fine as a child! he didnt even know he had the factor 5 leiden untill he got his blood clot in his leg, ive just inherited the one gene from my dad as my mother hasnt got it. I had hypron after having my daughter and after having brain surgery, but i think i could have done with more care during my pregancy with my daughter, they said i could go on a long flight and never told me to wear stockings or anything!! :wacko:


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## momomom

Hello all! I had my first appointment today with the OB. She said that there have been further tests and research done on pregnant women and Factor V Leiden, and that they don't think it's necessary for women who do not have a history of blood clots to use the anti-coagulant. 

I had a placental abruption with my first child during labor, but they never did any tests on the placenta after the birth, so we don't know if it was caused by a clot or by something else. So my doctor has given me the choice of whether or not I want to do the shots. I have until the beginning of January to let her know, so that's something I'll have to think about between now and then.


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## petitpas

momomom said:


> Hello all! I had my first appointment today with the OB. She said that there have been further tests and research done on pregnant women and Factor V Leiden, and that *they don't think it's necessary for women who do not have a history of blood clots to use the anti-coagulant. *I had a placental abruption with my first child during labor, but they never did any tests on the placenta after the birth, so we don't know if it was caused by a clot or by something else. So my doctor has given me the choice of whether or not I want to do the shots. I have until the beginning of January to let her know, so that's something I'll have to think about between now and then.

Yep, that is true. If you're not sure about the shots, you could just go with baby aspirin. My local hospital also does extra scans and NSTs on women with FVL to check that the baby is still growing and happy. Did your OB mention any of this?


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## momomom

She did not. I'll definitely ask her more about that when I see her next. It definitely makes me a little nervous to not do anything at all when we don't know what caused the abruption the first time around.


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## Emilyc

Hello,

I have factor v homozygous both the genes I am 18 weeks 4 days now but have been on fragmin 7.500iu daily and aspirin also. 
Having both the genes makes things much harder with regards to pregnancy but nothing else.
I have NEVER had a clot and no medication prior to pregnancy .


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## petitpas

Congratulations Emily!
Lol, it just goes to show. I'm only heterozygous and I had tons of clots in my lungs :dohh:


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## Emilyc

Hi there,

Thanks for the congrats x . I guess I have always done lots and lots of exercise. I used to run daily, ride my horse, swim and walk 8-12 miles a day with the dog.
I drink lots of fluid and eat a good diet, all of which Im not doing now due to pregnancy complications.

I think the trick is to be mobile and drink lots x


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## petitpas

Oh no! Are you very :sick: ? Boo hiss! How far along are you?


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## Emilyc

I have an weak cervix so im on light duties, but due to my factor v I cant go on bed rest ! Im now 18 weeks 5 days and praying for this baby to make it to atleast 30 weeks x


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## petitpas

Oh Emily, I hope everything goes well for you!
Have you spoken to a haematologist? If you are on the treatment dose of lmwh you should be protected from clots so bed rest wouldn't be a problem from that respect? Unless they are worried about it affecting the baby somehow?

I have my fingers crossed for you fxfxfxfxfxfxfxfx


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## ElmoBumpToBe

Oh petitpas i have just noticed you got your bfp!! HUGE congratulations :) are they going to put you on shots?? xx


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## petitpas

Thanks Elmo!
I was still on the shots from my miscarriage (have to take them for six weeks after last known pregnancy i.e. positive poas/blood test) when I got my bfp so I just stayed on them :lol:
I am on double the preventative dose at the moment, which is just a little less than the treatment dose (treatment for active clots that is). I am having my anti-Xa blood test tomorrow and the DVT nurse is looking at moving me up to the treatment dose as there is no reference for what I am at the moment (somewhere between the two) :dohh:

I am also on baby aspirin.

Fingers crossed please that we see a heartbeat tomorrow!!!!!


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## ElmoBumpToBe

Oh is it your scan tomoro! I have everything crossed for you, let me know how it goes hun! x


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## petitpas

Thanks. I'll let you know...


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## momomom

Good luck, petitpas! I hope everything went well! 

It's good to see what other people are going through. There's so little information out there about all this stuff!

I think I'm going to go ahead and do the Lovenox shots. The alternative is that they will just watch closely to make sure the baby is still growing. They may also have me take a baby aspirin, but the doctor said that the only thing that really works is the Lovenox. I would rather take the discomfort of the shots, personally. I think the worry of something going wrong would just be too much stress.


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## petitpas

momomom, I'm on both: tinzaparin (another brand of lmwh, like lovenox) and aspirin. 

Had a bit of a scare before the scan as I started bleeding, but we saw a heartbeat!!!
We're not totally out of the woods yet. The gestational sac is too small and I am going back next week to see if our little hippo makes it...


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## Emma 21

hi i too am heterozygous factor v leiden they found out when i was 26 weeks pregnant with my last baby after doing a thrombophilia screening as a precaution cuz my bro had a blood clot. I started on clexane then 1 a day until 6 weeks post partum. And Jaime was born healthy 6lb 12 0z on boxing day 2009.

They think this is the reason i had 3 miscarriages before my eldest.

I am now 10 weeks pregnant with my 3rd baby, i have been on 2 clexane injections a day since 7 weeks pregnant as well as 75 mg of aspirin. I have a subchorionic haematoma under the placenta so i am being monitored closely... but so far all is good.

I have an appointment at walsall manor hospital with a haematologist next tuesday and my 12 week scan next wednesday.

I will also have growth scans at 28 and 34 weeks to monitor the baby.


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## Emilyc

Hi Emma,

I too had a subchorionic hematoma early on they say it can be due to the thinners but the benifits of being on them out weigh the risks.

I have factor v both genes and im on fragmin 7,500 iu at night and 75mg asprin am daily. I am also on cyclogest for an incomplete cervix which isnt great.

If you fancy a chat im here


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## Emilyc

I am homozygous * two copies *


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## ElmoBumpToBe

Hi ladies, quick update from me, found out were having another little boy :) 

Had my 1st consultant appointment up here today (moved areas, hospitals) really pleased with the care here so far, they are saying they will give me extra growth scans at 28 weeks and 30 something weeks so thats brilliant news! Also made it so easy to get my clexane, i can just literally walk into the local clinic when i run out of it and they will give me it straight from the cupboard as long as i have my notes with me!

Petitpas - any news hun is everything alright?? xx


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## momomom

Congrats about your boy! I'm glad to hear that all is going well with you and your little one!

I just started the shots yesterday. The nurse said I can give them to myself in my thigh, which is fantastic as far as I'm concerned. Much better than the belly! Also, now that there is a generic, I'm paying a pittance for my prescription. Also very very good. I was certain I was going to have to pay $1,000 a month or something for the shots. (Cheesy American health insurance!)


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## petitpas

Elmo and momo, that's great news!

AFM, unfortunately my hippo didn't make it :cry:
I've now been referred to the top miscarriage clinic in the country at st Mary's. Apperently they specialise in women with congenital clotting issues and have access to more tests and treatment than our local recurrent miscarriage clinics. Fingers crossed that they can help me be fourth time lucky fxfxfx


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## momomom

I'm so sorry to hear that, petitpas. :(

Best of luck to you. I hope they give you the care you need! fx!


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## petitpas

Thank you Momo!
I will keep you updated xxx

Still on the tinzaparin shots for another month and then we'll see what the London people say. I am actually quite excited to go see them. I have only ready positive things about the doctors working there.


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## ElmoBumpToBe

Petipas im so sorry to hear that :( but very very pleased that they are doing something so positive to help you, sounds like you couldnt be in better hands! :)

Thanks momomom, good news that they are not costing you a fortune! Funny you should say that about your leg, i cant stand having them in my leg its so painful! OH does them in the sides on my stomach, we tried it in my arm the other night and it didnt hurt at all as he did it but it did hurt afterwards xx


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