Anticoagulation UK

Factor 5 leiden

I had a blood clot when I was on the pill, I was told this is common. I stopped the pill immediately.

Then 5 years later I fell pregnant with my first child yet again I ended up with another blood clot.

Tests were done nothing showed up.

Soon as I fell pregnant with my 2nd child I went onto heparin and warfrin just incase I had another blood clot.

My daughter is now 17 and I've just flew back from holiday with a massive clot from my groin right down to my knee.

I'm lucky to be alive.

I've got factor 5 leiden but I've never had any check ups in 17 years. This is very scary as I flew abroad at easter too. I've been like a ticking time bomb.

I'm now on warfrin and will continue for life.

11 Replies

Please see the Hughes syndrome on this Healthunlocked site, you could also look at the Hughes foundation web site for more information on blood clotting problems, I think you might find it really helpful, are you on any blood thinners at the moment


I had a dvt and a pe when my son was born in 1979, then nothing until January 2000. It was then discovered I had factor V Leiden, I too am on warfarin for life. My 2 children were also tested as was my siblings. My sister and brother also carry the gene, my other sisters and brother were ok. I've also passed the faulty gene onto my son which I feel very bad about but then someone passed it to me!


Try not to worry about your son having this gene. It's never bothered my dad he's 70 next year also his sister hasn't ever been bothered she had twins they now 50!

My daughter hasn't got the gene she's been tested my son will be getting tested in the next two weeks. It seems to be a common blood disorder.

This is my third blood clot in the same leg so I'm staying on warfrin for life.


hi tracey thats awful bet it was a huge shock for you and after all this time i am pleased you are now getting treatment just goes to show you dont know whats round the corner x.


Hiya dawn,

It was a big shock as I thought I would never get another clot.

I just hope people who've had previous dvt with factor 5 leiden go and get checked out.

A d dimer blood test should be 230 or below mine was 2514 I was a ticking time bomb I'm just thankful I'm here to tell my story.

Have you got factor 5 leiden dawn? X


Hope people who've got factor 5 leiden with a history of blood clots read my post.

Been to hospital yesterday seen a new nurse who's absolutely disgusted that I was discharged 17 years ago from the clinic when I've got a serious blood disorder!

I asked her when I can go back to the gym.... Her reply was I don't think you realise how serious this is your nowhere near out of the danger zone yet!

She said I should never of been flying more than a 2hr flight without taking a tinzaparin injection!

This shook me up as I've flew to florida 4 times!


hi tracey i dont have factor 5 leiden thank the lord i have under active thyroid and fibromyalgia dont want anything else lol carnt believe your blood test but pleased you are still here to tell your story and to let others know. x


Hiya Dawn, we've had a rough two years as My hubby got polycthamenia jak 2 it's been a hard few years but we both getting good care at hospital. Luckily we are healthy and not poorly with our blood disorders!

My hubby went for a mot at the doctors and his blood disorder was detected he's been very very lucky!

Look after yourself dawn x


hi tracey you have both had it rough thankfully you are both healthy take care and both look after each other x.


HI dawn, we've had it rough but when we go to the chemotherapy ward for my husbands venesection it makes you realise how lucky we both are. We see lots of poorly people on chemo treatment.

Take care nice chatting to you


take care tracey chat again soon x


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