blood clotting defect and pregnancy - can anyone help?

[MrsMcJnr]

Ladies, thank you for reading

I have been diagnosed today with thromobophilia. I have a G20210A prothrombin mutation. I do not know yet if I have a factor V Leiden defect too.

I lost my baby 6 weeks ago at 10 weeks. It will have been my first. I read that a large percentage of miscarriages and low weight babies result from mothers having blood clotting issues and I remembered that my maternal Aunt had one and I contacted her for the details. Turns out, we all should have been tested when she was diagnosed .

I then discussed it with my GP who felt I should be tested given my medical history and the miscarriage. The results came back today (after 5 weeks of waiting). My GP confirmed that I do have a problem with blood clotting. I have high levels of the defect in my blood and am at high risk of thrombosis, deep vein thrombosis and stroke. I should never have taken the pill as it has placed me at greater risk. I was on the pill for 18 years until last June !

I am being referred to a consultant hematologist and the referral is generally to discuss this but also with specific reference to the management of future pregnancies which will be considered risk cases. The referral may take some months to come through. This was all the GP could tell me.

In the meantime, I am wondering if anyone can give me any info at all on this. Specifically with regard to TTC, how can I ?manage? the condition and is there anyway to reduce the effects? I read somewhere about taking baby aspirin but don?t know any details.

Any advice/help/knowledge would be very gratefully received

Thank you. I really am nervous about the whole thing and know that time is of the essence. Is a haematologist the right consultant to go to and had you had much contact or discussion on the thrombophilia before the appointment? I'm just worried that they don't know enough about what I have yet as I've only had the initial tests. Do you take aspirin? sorry for all the questions

Yes, I had about 15 years worth of dealing with haematologists etc before getting pg!

Honestly, you'll find them really helpful - if they need to know more about what you have, they'll test you - if they already have enough info, they'll treat you accordingly. But either way, they'll assess you/your risks etc, and give you the relevant treatment for YOU. You now have the advantage of them knowing that you have clotting issues so they can deal with it, IYSWIM.

Who knows - they may be happy for you just to continue with aspirin, so no injections or anything! Try not to worry (easy to say, I know) - they are used to treating pg women with clotting issues nowdays, so I'm sure you'll be fine!

MrsMC I don't know anything about it but I hope these links help being armed with info for your appointments

Thrombophilia Support Group
TSG1

TSG2

Thrombophilia Forum
TF1

TF2

General links
General_link1

General_link2

This guy is a Uni expert on Thrombophilia so you could e-mail him and ask him if he has any pregnancy related articles?
Uni_link

Thanks GP has called me, I got a bit of a frosty silence when I told her about the BFP but she was fine after that and said she'd call consultant and get back to me ASAP.

hey MrsMc - what huge news!

I think the GP was probably going 'oh bum, how complicated' rather than being cross with you as such, and hurrah that you're getting your consultant appt.
I forget if you've mentioned where in the country you are - if you're referred to the JR CAT me and I'll come and buy you a bun .

I have access to medical journals though work so have collected a bunch of scientific papers from my own research into Factor V, many of which cover G20210A as well.
However they make for quite scary reading as they are all 'case control studies', (which means they looked at a bunch of women who had problems in pregnancy and then tested them for thrombophilia) rather than 'cohort studies' (which look at a bunch of thrombophilic women and see how their pregnancies go).

Cityangel - you are amazing! I will look into these thanks so much.

MrsBadger - thank you! I'm in Scotland but a really lovely offer. Hope all is good with you

congrats!!!

Just to let you know that the aspirin tabs you are taking- all those wierd extra ingredients are binders, they hold the tablet together. Are you taking the aspirin?

Thanks yes I am taking them, am nervous about doing it without medical advice but I can check that on Monday too so not too far away - anyone think I should stop?

mrs mc............congrats!!!!!!!!!!!!
Well done you and mr. mc, I sincerely wish you all the best and hope that your pregnancy is very happy and healthy.
Cant wait to be reading your birth announcement in 9 months!
So sorry that I dont know anything of your medical condition, but sounds like lots of ladies on here do.
Good luck sweetie
xxxxxxxx

Thank you PCM

Hey ladies hope you are all well. Sorry I have been AWOL for a few days, busy weekend! I had my scan yesterday. We saw a gest sac and yolk in the right place but no HB or fetal pole. I was measuring 5+2 which I think is about right based on OV (would have been 5+6 based on last AF) so the Consultant started me on my Clexane injections and so far I have administered 2 myself and they are not too bad! Have to go back weekly for blood tests and have a re-scan on 5/6 when I should be 7+3/8 to check for viability, fingers crossed!

Now I?ll try and catch up with you ?

Have posted on the pg following mc thread as wel, but glad to hear it all went ok and that the injecting is going well

MrsMC there are lots of different forms of suitable aspirin. We take Cartia when we fly so it's worth checking with the doc that the Boots ones and Carita are suitable.

cartia

Big hugs, City

Thanks ladies I checked the aspirin with the Registrar City, she seemed happy with what I'm taking but thanks for the link

Hello MrsMcJnr

Sorry to hear about your loss.

I'm afraid I can't advise on the mc side of things in relation to thrombophilia, but I have been through to full term pregnancy Mine is a protein C deficiency, which is different to yours but I think the same sort of pattern of events will apply. When I found out I was pregnant I was terrified, but the consultants at the hospital kept a close eye on me and I felt like I was in safe hands. I did see a haemotologist at the beginning, just to confirm my results I think and he passed info on to the maternity unit as to what would need doing later in the pregnancy.

I didn't need heparin (I don't think my thrombophilia is as serious as yours, as antithrombin is apparently more of a problem than Protein C) but I had growth scans from week 28 to check all was progressing properly. They seemed to think the main problem with thrombophilia (other than mc) is that the placenta gets a clot, although this is extremely rare). I did take baby aspirin for a while but not very long: they didn't seem to think it necessary in my case.

Anyway I had a lovely healthy pregnancy and my boy was born a robust 10lb 9oz. They advised that caesarean might not be a good idea (clotting risk), and if it had been a long labour they would have taken action to move things along as the risk to clotting would have increased. My advice would be not to worry your way through the pregnancy, like I did, as you really don't need to add stress into the equation. From ce what I could gather it's rare that things go wrong. Let's hope you have a viable pg - once you know you have, try and relax and enjoy it as much as you can Good luck !

Sorry no time to read thread just now but just want to say I have antiphospholipid syndrome and saw Lesley Regan on NHS.

They were very keen that I shouldn't get pregnant while waiting for the appointment as it would have made it difficult or impossible for them to plan the best treatment. The blood results alter as soon as you're pregnant.

Also, taking aspirin isn't right for everyone and, even if it's right for you, you need expert advice about when to start it and whether you need heparin as well.

Waiting is agonising but please don't try to treat yourself. All the best, will read thread when have time

Thank you BarrelRider ? that was a really helpful post and many congratulations on your baby boy I am trying to settle into it and you are right, once I have my next scan and hopefully see a HB, I?ll feel much better

Eemie ? thanks for your post things have moved on a bit and whilst I do appreciate what you said, I am very glad that I ignored my GP and started trying anyway. I was given an emergency haematology appointment when I got pg and now have all the meds I need, no further diagnosis was needed after the initial tests luckily. I got a letter this week about my GPs initial request for an appointment which said that as I was non-urgent, the waiting list was 12 weeks. It would have broken my heart to wait another 3 months and to be then told to come back when pg as nothing was needed meds wise or tests wise in the meantime. I did feel a bit worried self medicating on the aspirin but I fly a lot with work and it made me nervous, again, I am glad I did as the Consultant told me it was a good thing for me and I should start already if I hadn?t already. In fact, she was quite complementary saying I had obviously done my homework which was nice as I was expecting to be shouted at! I totally see where you are coming from and would have said the same to someone else I?m sure but I was lucky in that my condition was clear and the treatment also clear so no individual plan was needed. I hope things get moving for you very soon

Thanks MrsMc. Too late for me sadly. Glad my advice wasn't needed. Congratulations and all the best for your pregnancy

Hello ladies.
I was tested for bloods after my 3rd misscarrige and I was told that the first test that came back I was 10 on the blood clots where a ‘normal’ person would test between 0-6 the second time I done it I was a 13 I’d gone up but my doctor said I have to get pregnant first before they will give me the blood thinners but what I don’t understand is why can’t I have the blood thinners to get pregnant I was told not to take 75mg asprin but I have to do something to help myself if they are not willing to help ? Has anyone had anything like this ? 😘 to all those with lost babies xx