Factor v Leiden & IVF (abit long sorry)

[loobyboo]

Found out last week that i have the factor V leiden defect. had DVT in both legs in multiple places 3 weeks after the birth of my 2nd DD nearly 3yrs ago. it was mis-diagnosed in the beginning, a forgien doctor sent me home with antibotics and anti inflamatries and then had to go back in after the weekend, had test which then confirmed i had DVT (so i'm lucky to be here)had a awful time with this and had no help or advice about the DVT during hospital stay or after told to get on with my life. have pain in my legs still after all this time.

Anyway upon being considered for a host surrogacy for a friend had a appointment with haematology who did blood test (which i had when in hospital with the DVT but no results and no follow up) after saying that we could carry on with surrogacy. have now been told that it would not be wise to carry on. if it was my own pregnancy then it would be a different story. i can't see a differance between my own pregnancy if it was through IVF or being a surrogate.

i wondered if there was anyone who had FVL or any other blood defects and had IVF.

Views, info, advice much appreciated.

Hi Loobyboo,

Poor you.

This is v. interesting. I have a DVT and am now 36 weeks pregnant after my first cycle of IVF. It sounds like you have had terrible treatment. I was much more lucky and have had Clexane since 30 weeks and proper follow up from the thrombosis team. I don't have factor 5 leiden defect but I have spoken to woemn who have this and have gone onto to have subsequent pregnancies. You need a proper consultation with the thrombosis team. In my hospital the thrombosis team and maternity service work together, can you aproach an IVF clinic and ask them to contact thrombosis team?

I have been trying to find out the attitude towards my having a second treatment cycle now I have had a blood clot. My thrombosis consultant said that I could have IVF but would have to take Clexance (or similar I have developed an allergy to it) from the date of embryo transfer.

I don't understand why they are against the surrogancy. I would have thought it an excellent idea since it bypasses the need for you to carry the baby and hence reduces your risk of another clot.

Keep in touch. I know the difficulty of this situation first hand.

Lots of love across cyber space.

NS XXXX

Hi Loobyloo,

I also have Factor V Leiden (of the heterozgous variety). I was diagnosed at 16, now 25 and preggers with my first. Luckily never had a clot. I have been told that as long as I keep mobile, hydrated etc then I am fine to carry on pregnancy as usual. Postpartum I will need to self inject heparin (clexane) on a daily basis and be monitored on a weekly basis at the hospital. I also have some rather glamorous stockings to wear during labour.

Also banned from flying long haul while pregnant.

I think it is a more serious state of affairs if you were homzygous Factor V Leiden where you may have to inject Clexane throughout and be far more likely to clot.

Can't help with the IVF bit I'm afaid. Hope that is of some help??!

I also am FVL heterozygous, With my DS1 he arrived early I had a stroke. DS2 I had to inject clexane daily through out pre gand for 6 weeks after...

Not sure about the ivf/surrogacy route... We will be looking into surrogacy in a few years for a host for us

Its a lovely thing your doing.

First of all, how wonderful of you to consider acting as a Surrogate - your friend is very lucky to have you!

I also have Factor V Leiden (heterozgous variety I believe), but have never had a clot. I had IUI rather than IVF, and had to take low dose aspirin until around 30 weeks. I injected Clexane for the first week of my pregnancy, but was told to discontinue it when they thought the pregnancy wasn't viable.

Thankfully it was, but my clinic didn't think it was worth continuing with the Clexane as I was considered low risk. I was under Consultant care throughout the pregnancy, which went perfectly smoothly, and the only note of caution they made was that they wanted to induce me at 41 weeks. Luckily, I went into labour of my own accord at 40+2, so that wasn't needed. I also had to wear some extremely stylish support stockings during labour and delivery!

I did have Clexane injections for 3 days after the birth but I think that was because I had an epidural, rather than due to the FVL.

If you visit www.fertilityfriends.co.uk and search for Factor V Leiden, you will find lots of girls undergoing IVF and other fertility treatments with this condition. There is also a Surrogacy board where you can ask for advice.

Hi Loobyloo,

I can see I've misread this. You are acting as a surrogate for a friend. I can't see the difference between doing this for a friend or for yourself either.

I still think you need a good thrombosis team to discuss the issues and it seems as though you haven't.

NS XXX

Thank you all for you views it has been helpful.

I now need all the advice and info available as the Fertilty clinic have put a spanner in the works regarding this situation.

we are going to try an fight our corner.

we all knew what was involved in me having the DVT and that taking the injections & wearing those lovely stockings would be needed, the haemotolgist concerns are the long term use of the heparin can lead to thinning of the bones and spine crush sydrome. i've read on another post that someone took calcium tablets whilst doing the injections, shall look into it further.

It's a new thing for the clinic having a surrogate who is a friend of the intended parents, that was a issue in the begining, we got over that hurdle now on to the next one.
All i want to do is give my friends the chance of being parents, to experiance the joys, happiness and the love that comes with being parents.

once again many thanks

Loobyloo - I have an almost opposite problem - Factor 10 deficiency - which means my blood doesn't clot.

I got some really decent info though from the Canadian Haemophilia society site. here