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Hi

I had 3 miscarriages last year and I have just been diagnosed as Heterozygous for Factor V Leiden.  I am due to see a consultant in Dublin in 2 weeks time to be given my plan of action - heparin and/or aspirin.  I am relieved that we now have some direction and have found the possible cause.
I am also waiting for NKC results which I am getting from Dr ******* in 1 week.

I was wondering if anyone has been diagnosed as heterozygous for Factor V and has had successful treatment ?

Good luck to all or ye  ^reiki^
FD
 

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Hi FD,

Like you I have had 3 miscarriages, and have also just been diagnosed heterozygous for Factor V Leiden.  I will be taking heparin and aspirin for my next cycle.  I am really sad that these blood tests were not suggested before, because I am now probably too old to have a baby with my own eggs.  I may move onto donor eggs but still have a real fear of miscarriage, even though I have a diagnosis.

I was tested for NK Cells at the Lister, but these appear to be ok.

I would be interested to hear from others with FVL too.

Wishing you the best of luck
Daisy
 

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Hi FD,

I'm so sorry about your losses :'(. I have Factor V Leiden too. I was diagnosed before I started with TTC and fertility tx. Unfortunately I miscarried a year ago at just over 8 weeks after having seen a heartbeat twice. I was taking baby aspirin from the time of egg collection and was due to start injecting clexane, a blood thiner, when I found out during a scan that the baby had died. No tests where done. But I also have severe endometriosis and adenomyosis, both of which could have played a role.

Despite all this the chance for us to carry a pregnancy to term are very good. I'm sure there are some success stories on this site. Maybe you should post a question under the "buns in the oven" thread?

Good luck,

Sushi
 

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Hi Sushi,

Thank you so much for your reply.  I'm so sorry to hear about your miscarriage.  It's so hard to pick yourself up and carry on afterwards, but we keep going somehow.

Wishing you all the very best.
Daisy
xx
 

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Hello ladies

I too have Factor v Leiden, diagnosed four years ago.
I have had three miscarriages, two before my diagnosis and one after.
But I also have had three children with no problems at all, one of my sisters who has just had a baby had to have injections for 6 weeks after the birth, but that is the only treatment she had.
Could someone tell what the NK test is ( hope thats right ).

Thanks Charley xxx
 

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Hi everyone,

Sushi, Daisy, FD -  Im so very sorry to hear of your losses..

I have recessive Factor V Leiden gene although blood test says Heterozygous for Factor V Leiden. Not sure if its the same thing? My gp sent me to hospital for blood clotting tests - they took blood but wouldnt process it as they said I need to be referred to specian unit. This was at St Marys paddington where I had blood taken - my local hosp. SInce then Im waiting to be referred to heamotolgist.

My fertility clinic said my recessive gene should be no issue - Im cycling at the moment and dont have test results so I hope this not an issue...

If cycle fails then I will make an appoitnment with Dr Rai or Dr ******* for tests - my dad had various blood clotting issues....Now im worried I should go and see some - one quick  - privatly before ec?

Anyway- sorry rambling- do any of you know if IVF/ICSI etc has live baby rates with people with Factor V Leiden, NK problems etc.... I know if there are bfn , m/c then it makes sense to explore further.... I wonder how many others who have got bfp also have these blood conditions without being aware of them or treated?

Charley - I dont know much info about Nk test - sorry

Would really appreciate any feedback, thanks Debs
 

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Hi Deborah,

I'm not sure what to suggest as I know very little Factor V Leiden :-[ like what do they mean with "recessive gene" or "heterozygous"? Would love to know more myself just don't know where to get the info.

What I do know is that I will have to take low dose aspirin from the date of EC and clexane (a blood thining drug which is injected) after ET and if get pregnant until the baby is born. When I had my m/c last Jan at 8w I was only taking aspirin and my Dr was going to start me on clexane. But he this had nothing to do with m/c. But this time for peace of mind I will start clexane after ET. Speak to your dr and expain your concerns. I heard that at ARGC (heard it 2nd hand so don't quote me on it) they now give aspririn, because it can improve blood flow, and even clexane routinley and not just to women with blood clotting issues. 

I hope this hasn't confused you even more  :-\

Sushi (Ursula)
 

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Hi Daisy, Sushi, Debs, Charley

I am so sorry to hear about your miscarriages, it is heartbreaking that we should have to go through the pain in this day and age.

I'm very sad to hear that you had a m/c after taking baby aspirin Sushi. I thought that I had the answer to my prayers, but I suppose it's never that simple is it ? I am going back to Dr. ******* on Saruday and he is going to put me on baby aspirin and clexane - maybe the clexane makes a difference ? My prob is that I miscarry early (6 - 8 weeks), so not exactly sure when I need to get on clexane and to complicate it, I have an irregular cycle - I'm hoping Dr. ******* can advise for that.
Thanks for the suggestion on posting to the BITO section - will try there (fingers crossed there's loads of success stories)

NK tests are tests for Natural Killer Cells - check out http://www.miscarriageclinic.co.uk/causes2.html#2 for full details. There are only 2 dr.s in uk that i am aware of that test for this - ******* and Beer - others frown on it as codswollip, although I hear that St. Marys have started clinical trials

Thanks for those sites on FVL Daisy

On another note, a bit of advice. I am attending ******* and my own m/c clinic here in Dublin, although there is no one here that specialises m/c so I am dubious about their advice, as I seem to know more than the dr.s in the clinic that I have spoken to (nearly all of them!). I have an apt. in St. Marys to see a female prof there in Feb - I am between 2 minds whether I shoudl go or not. I don't want to have conflicting treatment, but on the same hand I want to be armed with all the knowledge before we try again. Any advice ?

Hopefully 2005 will be the year where all our dreams are fulfilled ^reiki^ ^reiki^ ^reiki^

FD
 

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Hi FD…your post was really interesting to me. One…because we have similar experiences with getting pregnant/timing of miscarriage and irregular cycles. And, because I also saw ******* and have an appointment at St. Mary’s coming up. ******* recommended prednisone for me and not clexane…not sure why the difference. When are you starting the treatment? I will be very interested to hear your experience.

I am not sure if you are using acupuncture or working with a nutritionist. However, my ob/gyn recommended that I do both and have found it to make a very big difference with my cycles. They are still on the long side—however, much more consistent in length. I used to be all over the place.

We also decided to have a consultation with Dr. Carter before deciding to start treatment with *******. My understanding is that Carter’s treatment has fewer side effects than the steroids or IVIG—so, I am eager to find out more about it and his success rates. We meet with him on the 26th. I also like that he is now testing sperm as well since there is some recent research that shows how immune issues in the male can result in recurrent miscarriage. On advice of our nutritionist—my husband is also having DNA fragmentation testing since there is a link between high fragmentation levels and early miscarriage and we want to rule that out before I start a NKC treatment.

I can completely relate to your comments about receiving conflicting information. However, we decided to see at least 2-3 people so we feel that we can make the choice that feels most comfortable for us to move forward.

Good luck!
 

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Hi All,

Ursula- Im not to clued up on all this blood 'stuff' either- Im been learning so much about sperm Ive kind of put this to the side...From what I understand recessive means I only have the one gene (so its not active)... compared to if I have both... so I suppose its kind of a dormant gene... as for heterozygous not sure..

Daisy - thanks so much for those links will look them up once Ive done this cycle as I might worry now about my blood!

FD- goodluck with your app. at Dr ******* on Sat... I havent started with any investigations yet on this so I dont feel that Im in a position to give advice... but wishing you lots of luck.

Nicky- is Dr Carter based in London? I dont even know what I need or if I need any further support- Im also not keen though on IVIG- although I havent done enough reseach on it - I know there is alot of info on this thread though...
Does Dr DeBeer (correct name) do similar testing too? Its really hard to decide where to go and what tests to have done- and also expensive dr after dr etc.... hope you get all the info you are after - wishing you the best of luck....

Im just going to hold thumbs that this cycle works for me - 1st ISCI... I havent had a miscarriage before but feel scared as Ive got this Factor V Leiden and the fertility dr said is not a problem as its recessive.... so will justhave to wait and see....  its so confusing when one dr says one thing and another dr says something else and to weigh up things, compare clinical trials etc

Better go- wishing you lots of luck... if I need any further investigations or find out more info I will let you all know, Deborah

Deborah
 

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Hi Deborah,

I would ask your consultant again. I have heterozygous FVL and have miscarried 3 times. The recessive gene has a lower risk than homozygous for venous thrombosis but, as far as I am aware heterozygous FVL is still a risk for miscarriage and/or other complications without treatment. That treatment is usually aspirin and low molecular weight heparin. I would double check this to be sure. Your consultant may like to look at these links.

http://www.bloodjournal.org/cgi/content/full/103/10/3695

http://humrep.oupjournals.org/cgi/content/abstract/17/2/442

I am not doing this to scare you, I only want you to get the right advice, so it is worth double checking.

Daisy
 

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Hi Deb—Dr. Carter is based in the U.S. However, he told me that I could worth with him through the ARGC in London or independently. I am not sure how it works if you don’t go through the ARGC. However, I have my first consultation with him next week. So, I will let you know the details after I speak with him.

My understanding is that Dr. Beer does most of the same testing as Carter and more extensive testing than St. Mary’s or *******. Dr. Carter does a few additional tests and he looks at the male factor. The expense of all the consultations and blood work has had me a bit worried. However, my insurance has covered it so far…so, we will see. The entire situation feels so out of my control…that going to a few people and making me at least feel like I have a choice about something has been well worth it!

However...looks like you don't  need to worry about any of the testing yet. Best of luck with your first ICSI. My thoughts will be with you.
 

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Hi

Just to let you  know I spoke to another GP ...

He said that Im okay as I have Factor V Leiden Heterozygous (recessive gene - have one gene - dormant so to speak).

If I had homozygous (2 genes) Factor V Leiden then I could be at risk for miscarriage...

Whew.....

Daisy - thanks for the info... I will get in contact with the consultant again and also mention the links....I really appreciate your advice and i agree its better then to be safe then sorry -

Nicky- I agree it helps to the specialists and to have some choices... having IF one feels so out of control. My DH has severely low sperm and seeing the urologist helped so much and doing loads of research... my minds like a mush at the moment from fertility drugs! Hope your appointment goes well...Id really appreciate to find out some more info...
I wonder if my private insurance would consider this blood work/hematology as they wont cover anything to do with fertility treatment. I suppose if I could conceive naturally then I would still need to check my blood - my dad had serious blood clotting issues before he got cancer.... anyway will call the clinic now...

Debs
 

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Hi Debs,

Sorry to on about this but did you read the links?  One of the papers is written by Raj Rai from St. Mary's who is an expert in recurrent miscarriage.  He shows that you are at risk from m/c with heterozygous FVL.  Have you had a previous pregnancy? I know you haven't had a miscarriage (thank goodness).  Also with your family history of blood-clotting...  Finally, I'm afraid GPs often are not the best places to get advice on FVL and it's implications in fertility and pregnancy loss.  They may be right that recessive gene is less risk for general health (e.g. DVT, VTE etc.) but not in pregnancy.

It maybe that you do not get treatment until you have miscarried, but this doesn't seem right to me.  I am worried about you.

Daisy

 

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Hi Daisy,

Once again thank you so much for all your support. I have emailed my fertility consultant at the clinic Im having treatment at in london and expressed my concerns and included your links too... I feel a little anxious doing this as Im aware it can really make some dr's pissy however he is very approachable and its important I express my concerns.
I had to insist that they freeze my DH sperm so maybe with this I will need to put my foot down.

I havent had a previous pregnancy before but I too am concerned because of my dads blood clotting issues.... if I get to embie transfer stage and I am potenially at risk of m/c (as per your links) then I ought to be supported.

I will let you know if I have had any feedback.... when I asked the fertility dr before he said I am at no risk and if he says this again what would you do? Should I insist on baby asprin or heparin? Are there any  negative risks involved in taking these drugs?

PS - I love the name Daisy - its one on our list.   
 

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Hi Debs,

I just read my last post and hope I didn't sound too alarmist - I am not an expert on FVL obviously, but a second opinion can't hurt. 

I'm sure your consultant won't mind you asking again for your peace of mind.  It is important to express your concerns, as you say.  It is very hard to say what to do if your consultant insists you don't need anything for your FVL.   Not every woman with FVL is affected in every pregnancy obviously.  Could you ask him to clarify why he thinks the hetero FVL is no risk? Is a second opinion an option? 

There are potential side-effects with any medication.  However, heparin and aspirin are tried and tested for blood-clotting issues.  Heparin is prescribed because it doesn't affect the foetus and is safe in pregnancy.  Some doctors start heparin at about 2 days before ET and some start at a positive pregnancy test.

I'm sorry if all this has opened a can of worms for you and your consultant.  I feel awful if I've caused you any distress. 
Daisy
xx
 

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Hi Daisy,

Dont be sorry at all for your last post... my bloodclotting issues have been in my mind for some time and your post helped me- in that it gave me a push to ask our consultant again.

I am pleased I have done this and will probably discuss this with him when I see him before egg collection. I feel confident with his point of view and we will make a decision then.

It doesnt even feel like Im responding to stimms so will have to see how this cycle is going to go anyway. If I get a bfp- my goodness ! If not then Im going to book appointment with Dr Rai and another hematologist to look into this further. I will find it to stressful to try and get 2nd opinion in a rush - I should be having ec by next week anyway... and I do think there are lots of women with FVL who are not affected...

Or maybe I will call and see when I can get an app with Dr Rai ... I would like a 2nd opinion- will just see when I can get one by.

Once again to say you have caused no distress - I will let you know the outcome of my conversation with my consultant . Holding thumbs Im responding to these stimms - scan on Monday, Debs
 

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Hi Debs,

I didn't realise EC was so close.  Important not to stress too much I agree.

Wishing all the very best for this cycle.
Daisy
xx
 

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Daisy,

thank you very much fot the links. The terminology is now much clearer to me  ::). Have just had a look though my medical notes, so I have heterozygous factor V leiden. Debs, looks like we have the same then? Did you have a chance to speak to your consultant?

Sushi XX
 
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