Hi Samoy,
Yes, there are different levels of severity of FVL. You can have heterozygous FVL (affecting one gene) or homozygous (affecting two genes; effectively a double dose). It?s much rarer to be homozygous but if you are, the chances of having a clot are much higher. I should point out, though, that I?m only heterozygous myself but other medical conditions have (my doctor thinks) also had a hand in my clotting history. So there can be quite a few factors to consider.
What I will say, though, is that I have not so far had a clot occur while I have been properly anticoagulated (on the appropriate blood-thinning meds at the right dose). So if you get that sorted out, you have a very good chance of being fine through a pregnancy. My doctors were taking an ultra-cautious approach for the baby?s sake but also for mine, since I had shown I could clot very easily. I?m glad to hear that yours have discussed you going straight onto heparin when pregnant, as given the number of miscarriages you?ve had, taking that approach early is more than justified.
A relative of mine had 7 miscarriages ? I begged her to go and get tested for FVL (on that side of the family, so very likely to be the cause of the mcs) but she didn?t, out of fear I think at being told she was ?defective? She has now had her family by adoption so all is well, but it pains me to think that she could have avoided the earlier heartache. Carrying a baby to term is perfectly possible with FVL as long as you get the right treatment. It is definitely a positive thing to find this out as then you do know what you?re up against and can take action.
FVL was only discovered in, I think, 1993, so it?s a pretty new condition by most standards and many doctors know little or nothing about it. I?ve lost count of the times I?ve explained it to non-specialist doctors at unrelated medical appointments. Once I was delayed for 40 minutes before going into an appointment, and when I went in, the doctor had left a webpage about FVL open on his screen ? I assume he had spent time googling it before calling me in! If only he?d asked me? So what I would strongly advise you to do is read up a bit yourself (the site I linked to earlier is great for this) and use that knowledge where you need to.
The major problem you can encounter is that there is no definitive medical guidance on how exactly to treat pregnant FVL women. As a result some doctors recommend heparin all the way through, some say mix aspirin then heparin, some say just aspirin, some do nothing till you?ve had X number of miscarriages etc, and there is no ?standard? route you can fall back on. My doctors chose the strongest response because of my history, and that has proved right for me, but other women may get treated differently and that may work out OK for them or they may need to argue for a different course of action.
I was lucky too in that my local maternity hospital ran a joint haematology and ante-natal clinic, specifically for women with thrombosis histories, so I was seen at that throughout my pregnancy. It might be worth asking around to see if you could be referred to a similar clinic once you are pregnant.
One thing to consider with Fragmin is that it affects bone density, so given that pregnancy will also affect this, you?d be wise to take calcium supplements to counter this while you are injecting.
You can be taught to do the injections yourself easily. I got used to them quickly and I was ultra-squeamish about needles when younger.
Finally, congratulations to tattycatty, ledodgyChristmasjumper and you too samoy for haviing babies even with FVL. It's always heartening to me to read about more women doing this. I have not yet made a final decision about having a second child, but having FVL would certainly not put me off, having gone through it once.