Anyone TTC with a blood clotting condition?

[mackjm20]

Hiya I am 29 we are planning to start ttc baby #1 soon.

I was diagnosed with Factor V Leiden (blood clotting condition) a few years back when I had a deep vein thrombosis and have been advised that this may cause issues with conception and during pregnancy.

I already know I will need to take blood thinners during pregnancy but I’m just wondering if anyone else has any experience of this? There just doesn’t seem to be much info out there and I am so nervous about it all.

Any guidance would be massively appreciated x

I have a clotting condition and have had 2 children, I had regular blood tests and blood thinners and my pregnancies were fine, both were early though, 1 by c section and 1 natural, recovery was much longer after c section with clotting, blood clot and thinners but it was all ok in the end. Try not to worry too much.

@Butwhhhyyyyyyy thank you so much that’s so good to hear that you have still managed to have 2 little ones.

You know when you start over thinking! Every time I think let’s start ttc I get super nervous about it all so it’s nice to hear successful stories x

I've no experiance of this but I did try to mention family history of clotting disorders to the midwife and was told that that wasn't considered.

If it's not being monitored/recorded that'll be why there isn't much info out there. It also means the data there is is more likely to be from when things go wrong.

If you're taking blood thinners you're more likely to have pph but less likely to have a stroke, you'll need to give birth in hospital.

@DwellInPossibility thank you. Thank you that’s interesting to know as because I have had a clotting condition my sister has been advised she will need to tell midwife/ doctor if she ttc as she may have the same thing so need tests.

They have said that the blood thinners will help to prevent the worst case scenarios for the baby but yea the pph is certainly a real concern.

I know absolutely it certainly seems to present the worst case scenario when I research X

@mackjm20 👋🏼 I have factor v (just the one gene tho). My first pregnancy last year I was prescribed aspirin. That pregnancy ended in MMC. I was told they were fairly certain this wasn't because of my blood but as a precaution next time I will be on blood thinners (heparin). So I think it's good you have a diagnosis and there is a plan to medicate to counteract any problems.

I wouldn't worry too much about pph. From what I've been told the blood thinners get out our system very quickly and there will be a plan in place for these to be stopped prior to you giving birth. Obviously you may spontaneously go into labour early but you can discuss what would happen in this situation. Again I'm fairly sure they medicate to counteract this (family member had similar experience, although they weren't giving birth but their blood needed thickening asap to counteract blood thinners).

To me the blood thinners are a no brainer if it means a healthy baby at the end.

@Fizzl thank you so much. I am so sorry to hear about your MMC.

Absolutely I think they are suggesting fragmin as soon as I get a positive test result which I think is aimed at helping avoid clotting.

Thank you - yes I’m hoping they will be out of the system fairly quickly just isn’t much research available online.

Absolutely! Will be taking them without question! Are you currently ttc? X

@mackjm20 yes we are ttc. I took a 3months break after the MMC. Started trying again in March then my periods decided to stop for the first time ever in my life from April until last week! That was just an unfortunate blip tho and we're back ttc now (hopefully)! I'm a similar age to you too and this will be our first baby.

I've been told to take aspirin from positive test and then injections from 6 weeks so I'm keeping everything crossed for a healthy pregnancy this time 🤞

Im not totally sure but I think theres not a lot of research out there because it's quite a new condition which hasn't been studied all that well yet despite it being really common! But there are lots of other blood conditions managed the same way in pregnancy so I feel confident they're pretty clued up about how to manage it and the blood thinners are definitely confirmed as safe for use in pregnancy and they know the care you will need etc which is the main thing.

@Fizzl good luck I’m keeping my fingers crossed for you :) sounds like we are in a very similar scenario :) please do keep me updated how you get on!

I know it’s strange isn’t it my doctor said so many people don’t even know they have it so I think it helps that atleast we know so it can be controlled and monitored. Are you in the uk?

Yes and you too!

I was told it's roughly 1 in 20 people have 1 gene mutation they will just never know about it. Almost all my dads side of the family are affected as both of my grandparents had 1 gene so it's just continued to be passed down the generations. My dad has 2 and on warfarin for life. It's quite scary but I keep thinking at least I'm fortunate to know and any risks can be managed.

I am in the UK, are you? Do you have 1 gene or 2?

Thank you :)

Omgosh really I didn’t realise it was that common! Just 1 for me aswell I had a DVT back in 2014 caused by the pill and it went to pulmonary embolism in my lungs which was pretty scary but I haven’t had to stay on life long blood thinners as they said my risk would only increase when pregnant. Think the past experience has scared the life out of me a little.

However like you I am so grateful to know as fingers crossed well managed care will prevent so many of the worst outcomes. Also They have mentioned everything would be consultant lead which also gives me that extra peace of mind.

Yes UK for me too :)