Thrombophilias factor v leiden - re-current miscarriage.. sorry its long!

Hello Everyone,

Im new on here so please bare with me, I just feel like I need some friendly advice from ladies that have been through the same as me.
Im 28 and have a lovely daughter already who is 4 next month, since having her Ive had in total 4 miscarrages now which have all been very different, I was so shocked to even have the first miscarriage as Ive already got a little girl whom I carried with no problems at all.

I lost my first baby at 9 weeks and was devastated, To be honest the doctors at the time were not that helpful they just gave me the basics that 1 in 4 women have miscarriages and its so common blah blah so 6 months later i tried again and only got to 6 weeks, again they were not concerned at all and said they wouldnt investigate until I had a 3rd which came along pretty soon after also at 6 weeks.

I was then referred for tests basic blood tests which I was told would more than likely all come back not telling me much, So i didnt have much hope they just said because I already have a baby keep trying its just one of those things. Doesnt make you feel good though when you are told things like that as you want an answer BUT in the mean time my mum found an article in a magazine about taking low dose aspirin during the first few weeks of pregnancy, I spoke to my doctor and he said yes by all means take it if i feel i want to try it but nothing has proved that this does work.
When I fell pregnant again I decided to give it a go, I was very nervous about taking it and being pregnant again, I went for my 6 week early scan and they found a heart beat, I was so happy I just cried I couldnt believe it, I had several scans after that and was told everything was fine But was informed one of the blood tests I had done had come back that I have thrombophilias factor V Leiden, This is a gene that is passed on from only one of my parents and is a clotting agent in my blood, basically my blood clots a lot quicker and more and this is related to re-current miscarrage but because I was taking the Aspirin it had helped thin my blood and therefore everything was good. At the time it went in one ear and out the other as I was just so happy I was pregnant and had seen my babys heartbeat.
I got to nearly 10weeks and started bleeding, I just couldnt believe it I rang the doctors etc and they gave me the usual rest up etc etc but I knew in my heart that I had Lost this baby too. I was so angry I ended up paying to see a private doctor to scan me and talk me through what had happened as my hospital couldnt fit me in that day, even though im with the recurrent miscarriage group. The outcome was that because I have this Factor V Leiden I should of been prescribed Heprin injections to thin my blood more as the Asprin just wasnt enough in my case.

I was then on a mission to basically give my doctor a piece of my mind as I had these tests done in December and didnt get told til june this year (when I was pregnant again) that I had this thing, 6 months too late in my mind. He phoned me and told me that I am not allowed the heperin injections as my strain of this isnt severe and he would just prescribe me with Asprin again. I was so upset and by far this has been the worst miscarriage I have had. to top it off I had my D&C on my husbands Birthday!

I have since demanded to see another doctor who was lovely, she took the time to talk to me and explain everything about this Factor V Leiden, she has agreed that If I decide to try again she will prescribe me the injections. At the time I was adament that I couldnt put myself or my family through another miscarriage, I just dont think people really understand how you feel about losing a baby unless you have been through it yourself. Its true what they say Time is a healer and now im starting to feel ready to start trying again.

Have any of you ladies been through the same thing? Or do any of you have any success stories about taking the heperin if you have Factor V Leiden, some postive news will really do me good at the moment.

Really sorry my story is so long, just wanted to share what I have experienced in the hope it may help someone else. (When I mentioned to my own Gp's at my local doctors that I have this, none of them knew anything about it!!) So i hope it will help.

xxxx

Factor five and having children

Hello my name is Melissa I am 31 years old a mother of two wonderful children.. I have a son who is 8 and a little girl who is 3.. I was diagnosed three years ago with factor five when my three year old little girl was only 2 weeks old.. Here is a little of my story... My husband and I lost our first pregnancy at 16 weeks, it was the most sadness moment of my life... We went into the office for a visit to see what our baby was going to be and the doctor told us that they were so sorry that there was no heart beat and we had lost our baby, the next morning he sent us to the hospital for a D & C.. We were crushed even after this short time I had bonded with this baby and I could not believe it. The doctor said well we could try again in a few months.. it does happen to alot of women in their first pregnancy.. So a few months later we were preganant again a very scary time but a wonderful outcome after three days in labor we had a handsome baby boy even though we had to have a csection it was great we had a child and everything was fine... Five years went by and then we had another baby and this time we had a beautiful little girl everything was great a scheduled c section this time but great she was good and I too was great than when she was 2 weeks old my life changed forever..... I awoke one morning with this extreme pain in my r calf and thigh went to see my ob doc and he confirmed thru ultrasound that i had a dvt I was put in the hospital right away while being in the hospital they ran test after test on my beacause after being on iv heparin the clot kept getting worse they then told me that I had factor five I did not know what this was and could not believe this... This has been the best and worst three years of my life... they say that you are born with this but you never know until there is a problem that is awful to me I believe that there should be a automatic blood test at birth to see if you have this since it can be so fatal.. My clots got worse and then they put me back in the hospital and put the green filter in thank god because now I have the clot in the r leg all thru out up to the groin,, recently in march of this year I had a clot in the right brachical vein in my arm after being admited in the hospital for three days on lovenox iv heparin and coumadin which I take everyday and will take for the rest of my life they got the clot in the arm dissolved... This has been a long road and who knows what will be ahead for me or you but keep faith and everything will work itself out in the end,. My docs could not believe that I had two healthy babies and carried them full term with factor five without taking shots during the pregnancy.. but everything was fine and they were great and still are doing fine... we did not know that i had this untl after the birth of my last child but if someone puts a damper on you by saying well you probably wont have children with this i am living proof that you will.. GOD WILL SEE TO IT HE DID FOR ME I just wanted to share a story with you.. May God Bless You all....... melissa hall

Hi

Sorry to hear about your loses. i have had 4 miscarriages .
had blood tests results came back for heterozygous factor V Leiden , doctors tells me this is not associated with miscarrages , but looking on here it looks like it might be?!
How you getting on now?
Be good to hear from you

Hi

Hey,

Sorry to hear about yr losses i know what you are going through. I myself have suffered 7 miscarriages at 5/6 weeks and an ectopic preg at 8 weeks. I was reffered to Lesley Regans clinic at St Marys Hospital. They tested me positive for Factor v Leiden also. I have a letter explaining i must have aspirin and Heparin injections throughout pregnancy. At 5/6 weeks gestation i have to go to St Marys and they test your blood to check the clotting level and adjust the amount of aspirin accordingly. Unfortunatly me and my partner have split so not in a position to put it in to action. But v happy i have an answer for all my losses and hope for the future. Can you not be reffered to St Marys? they are amazing!! Good luck hun,

Zoe
x

Don't give up !!!!!!

I have just read your story and I just want to give you a little hope. I am 35 and have 2 children (10, 8). We started trying for No.3 five years ago and since then I have had 7 miscarriages and 2 ectopics. I had my first two children without any problem and then suddenly chaos... I had every test under the sun and nothing was found. At one point they thought that I may have an immune problem but I doubt it as I had already successfully carried two pregnancies. Eventually I went to see Raj Rai at St Mary's in Paddington and he found I had impaired fibrinolytic response, which is basically the same as you, I think. It is quite common with women with Polycystic Ovary Syndrome. Anyway, I had to do ivf because I don't have any tubes left and the first time I did it they decided to put me on Asparin - got pregnant and went for 6 week scan and it had reabsorbed itself - GREAT! Then I tried Heparin and they same thing happened. I have just done IVF again and this time they have put me on Clexane injections once a day and I am now 7 weeks pregnant and touching wood for Britain. I have to say that I feel as sick as a dog, so hopefully thats a good sign. I have a scan on Wednesday. But anyway, it's just to say that Clexane has got me further into a pregnancy than anything else in the past 5 years. Make sure you get a doctor that is forward thinking and don't let them fob you off. Believe you me, you can do this.... You've done it before so you know you can. Fingers crossed x

Good luck

Hi there,

I really hope that you are still pregnant and all is going well.

I have a 3 year old and have had 5 subsequent miscarriages in the last 2 years. Like you, I had all the tests done and then went to Raj Rai. He was very informative at our meeting and said that he would carry out a few tests. My results came back as 'impaired fibrinolytic response' like yours. He has prescribed a low molecular weight heparin and we are trying to conceive from this month. I am hoping that this is the answer, but am nervous about allowing myself to pin too much hope on it.

When you said that 'it had reabsorbed itself' - what does this mean?

Have you subsequently gone through your local GP for all your usual pregancy scans/blood tests etc? I ask this as it took me 4 weeks and numerous phone messages and emails to get Raj Rai to contact me to discuss my results. I couldn't even get through to make an appointment. Did you have any problems after your initial consultation with him?

All the best, wishing you luck

S

Tracyluker

Hello,

Just wanted to say that I know what you are going through. I have a 10 year old son from my first marriage but when I got together with my second husband one of the reasons we actually got married was to have a child of our own. We started trying straight away after we married in August 06 and I got pregnant quickly but as soon as I found out and did the test I started bleeding and within a few days had lost the baby, this was at the beginning of November 06. I was really shocked, as it is not something that really crosses your mind until it happens to you. We started trying again and by February I was pregnant again. Of course this time I was petrified that the same thing would happen again. After going for an early scan I was told that there wasn't a heart beat and to come back in a couple of weeks. I can't really describe the feeling of waiting to see if your baby is alive or dead, but I'm sure you know exactly how it feels. On going back I was told that again the baby had gone. I decided to wait and see if nature would take its course as didn't want an op but in the end I had to as it was going on too long and I wanted to try and get on with my life.

Having the op was horrendous and I couldn't stop crying while I was in there. We decided to give it one more shot but it took about 10 months to conceive, which does your head in as every month you think this could be the one. After conceiving again it was the same story starting to bleed, early scan, told to come back and then told again that the baby had gone, at roughly the same time as the last one, between 6-8 weeks. This time though it was awful because again I wanted to let nature take it's course if possible as really couldn't face an op again. The hospital said they wouldn't do op after scanning me because the lining was'nt thick enough so I just assumed nature would take its course. How wrong I was! While on holiday in Canada I had the most horrendous pain and clots which was very frightening in a different country. When I got back I called the hospital and they prescribed antibiotics as thought maybe I had infection. After taking these for a week a massive clot came out and I thought that was the end of it but I still carried on bleeding. After more scans I was eventually advised to have a d&c and to be honest I just wanted it over after all that had happened.

The thing I find hard is when you tell family and friends they don't really understand. I have friends who have had miscarriages but they have all gone on to have more children, I don't actually know anyone who has had three on the trot. Why is it that until you have had three they don't start investigating? I have been to see a specialist and he confirmed that I have infact got a fibroid and a polyp! Both of which he is not concerned about but I'm not really convinced. Even though all the blood tests came back negative he has suggested (if we want to try again) using heparin and aspirin and has already given me a prescription. I don't know if it will work and will ask my doctor what she thinks when I go next week. My husband has said that he hates seeing me going through all this pain and sadness and would rather not carry on trying but he said, if I want to, then he will. How do you pick yourself up to try again as you have obviously been through it more times than me? I feel like if I don't try again I will regret it for the rest of my life and if I do I will be so petrified that I will lose again and if I do I will be destroyed again. I have very up and down days at the moment and it is always on my mind. It is a very big decision to make as I have just turned 40 as well. I would just like to hear some positive news about trying these drugs. Sorry for going on so much but this is the first time that I have got it all out in black and white.

Take care x x

There is hope!!

I just wanted to email you all to say that there is hope out there. I fell pregnant with my first child in May 06, everything went well right up until the birth when my beautiful baby girl was stillborn. I cannot begin to explain how hard this was or the immense feelings and emotions that we went through. They tested me and I was diognosed with Factor V Leiden. I had never heard of it and neither had my doctor or anyone around him. I was ademant that I was going to try again and that at least there was a reason for losing my daughter, Factor V Leiden is hereditory and so I believe that Chloe had a very real important purpose in bringing the fact that I and my family have this mutation.

I became pregnant again and immediately began to take asprin from day 1, I went for a scan at 6 weeks to make sure there was a heartbeat and then that day I began daily injections of Fragmin which is very similar to heparin. I spent every day afraid, worrying about everything, no knowing what I would do if I had the same outcome, I hated the injections but it was for the best and I continued on.

Although I had to become a bit forceful towards the end I had a baby boy by C-Section in January 08 who brings us such joy and happiness. He is in to EVERYTHING he should't be but boys will be boys.

I still think about Chloe all the time (although I am lucky in the fact that she has a name and I have photos and clothes and a grave to tend and feel close to unlike many of you). I do believe without Chloe what may have happened to Lewis and other children in my family, she is a very special little girl.

I would go through the WHOLE thing again if it meant that I could have another child who brings such enjoyment like Lewis does to me and my husband, it is worth the worry and the pain of the injections. Read up and know as much as possible what you are talking about and don't take the doctors word as fact. Nothing is going to stop the worry or the pain of losses but when you have that baby in your arms believe me it is worth every second of agony.

Please let us know how you get on.
Rachel