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

Hello MMJnr, sorry you've had such a stressful time of late. I know very little about any of this, but am I right in thinking this could have caused you m/c? If so I am hoping that you can get the right treatment next time and your chance of M/c would be reduced. It's such a horrible thing to go through I really hope you don't have to again.

RE the clexane/heparin injections. I've given it probably thousands of times! It is a tiny needle and is painless. Put it this way no-one has screamed at me yet and most are surprised at how quick and painless it is.

Most of all try to stay chilled, I think that is the most important thing with TTC. From what people have said on here any injections aren't required until the second trimester. If you did become pg before your app, I would definately ask to have the appointment brought forward. Good luck and take care. xxx

Can I ask, has anyone taken aspirin before getting pregnant, or has everyone just taken once getting pregnant? My consultant said to me that I should take it after getting pregnant, but a friend who's cousin also lost her baby in the same circumstances as me took aspirin to conceive on and had no problems. So my friend has suggested taking the aspirin before getting pregnant, or should I just stick to the consultants advise?

Sorry MrsMcJnr for the hijack

Mrs McJ,

Apologies for the unseasonal name - I took a break from MN around Christmas time!

I think you are based near me and I just wanted to say that there is a great clinic at Simpsons at Edinburgh Royal Inf which deals with clotting issues in preg. I'm not sure but think you would be referred asap if you got pregnant again. You would be monitored closely throughout pregnancy - loads of people have similar problems (not that it diminishes the importance/stress to you!) and there are many many successful outcomes. Good luck.

As for my v frustrating progress, after a year of ttc I got my BFP last month only for it to end in m/c at 5 weeks. After a wobbly week or so I now feel fed up rather than really miserable but I guess I'm not alone in finding this whole business incredibly difficult to cope with....

I'm always jealous when people talk about 'my consultant'. How does this happen? My local hospital has never taken the faintest bit of notice of my multiple miscarriages, and the GP only referred me for the most half-hearted of tests after lots of badgering. I went private in the end, but how do you know the private guys are alright, and not just after a fast buck?

Anyway, MrsMc - I was advised to take 75mg dose of aspirin (a tiny dose) all the way through the pregnancy. Apparently, some blood-clotting disorders only appear when pregnant, so next time I'll be on heparin too. I've also heard that it's not too bad at all, and well worth the outcome. In some ways it's good that you've found a reason, and that it's treatable.

Keep buggering on, as we say at home...

rahrah - I took it before I started trying to get pregnant but advice may have changed since then.

Mrs Mc-I have 2 x DS then have had 3 m/cs in a year. Had blood tests after 2nd m/c and a mutant factor 2 gene came up (doesn't explain how I came to have DSs!, am now 9.5 weeks pg and have to self inject every day with Clexane (did this with 3rd m/c but it was never going to turn into a baby (m/cd at 5 weeks), still won't allow myself to get optomistic about this pg, but at least this is the furthest a baby has got in the past year (had a scan on Tuesday).
If you end up on Clexane (have to start it immediately you get a bfp) it really isn't too bad to do (I found the worry about how I'd manage to do it was worse than the actual doing it.
Hope this helps

Sorry to read your post.
My experience is, that properly managed there is nothing to stop you getting your family. I have Factor V Leiden and prothrombin deficiency. I've had 2 DVTs (1 mid pg; the other 18 months later) and have 2 boys (3.5 years and 4 months). There is nothing to stop me having a third if we want one (quoting last doc!).
Last pg I started on Clexane jabs from the moment we started ttc and continued whilst pg, doubling the dose at 24 weeks. Then carried on with the Clexane for 6 weeks after and that's it!
The jabs are unpleasant to do ime, but you get a lovely baby so it's worth it. With heparin you don't have to put up with regular blood tests either.
That said your pg is automatically "high risk" and you can't have an epidural within 12 hours of the last jab.
My experience has been that your treatment varies according to the doctor and hospital (drugs, appointments etc.).
Lastly I'd say if you don't hear something you can accept get a second opinion (I was told not to have any more kids after ds1).

Thank you all for your posts, I feel much calmer about it all than I did last night still very scared that I won?t be able to sustain a pregnancy but hopeful that I will be one of the lucky ones.

Hi Treacletart ? thanks for posting for me. All the very best for the birth of your DD in August Those clots sound really scary, poor you! It must have been horrific when you realized how serious they were. It seems to me that drs don?t always test around a diagnosis, I was pretty ill a few years back as I?ve said and I?m sure they linked that to Lupus which does appear to be connected to thrombophilia.

So sorry MrsBadger, I thought you?d had your baby wishing you a healthy rest of pregnancy and birth too Glad to hear they took no chances with you, that?s re-assuring.

Speckledhen ? so sorry to hear you have been through so much. I really hope that this pregnancy continues to go well for you. Thank you for the link, that is useful.

Thanks Gilly, I do remember her but had forgotten about her blood clotting issues until you said.

Hey Uki, thanks for coming over to post for me I am lucky that my GP agreed to test me. So glad to hear things are going well for you. It seems that if I do get a BFP before the appointment, I should maybe take the aspirin to be on the safe side until I can get seen, do you agree?

Dimpled ? thank you for taking time to tell me your story. I am sorry to hear about your lost baby I hear what you are saying about the internet and the horror stories. There are lots but I am focusing on the medical meaning of it all to be honest rather than the the stats. I am just so glad I bought Lesley Regan?s book about miscarriage. Whilst some of it is really hard to understand (I don?t have a scientific mind) it did prompt me to investigate this hereditary disorder in my family in case it was a link. I live just outside Edinburgh but will probably get St Johns as opposed to the ERI but I do know that that is a teaching hospital too (or at least was when I was at Uni ? dated a medic for 7 years!)

BellaBear you are sweet, how are you getting on? Must catch up with you all, I?ve been so self absorbed lately

FlossAlump ? thanks for the good wishes. Tiny needle sounds much better

Good question RahRah

Tinselledtryer ? hello you! I am so so sorry that you lost your baby I know exactly how it feels to wait so long, get so excited and then for it all to be taken away. Please do join us on the TTC after a Miscarriage thread when you feel ready or even just to chat. I?ve met so many lovely ladies on there and have really felt the benefit of their support. Thank you for the info about the clotting clinic, it?s always good to hear positive things.

Hey Herbaceous sorry you have had a hard time with the medical professionals on being tested. I know I was lucky that my GP agreed and saved me more possible heartache.

Hey Jossie ? thank you for coming to find me I think the one I have is factor 2 (G20210A prothrombin mutation?) it does seem odd that some have babies ok and then have problems and others are either fine or not. My Aunt has this as I said and her 2 babies were low birth weight but she didn?t suffer any MCs. How did you get the Clexane right away when you got your BFP? Call your GP or Consultant? Glad that things are looking up so far for you fingers crossed.

Crossed with you yomella. Thank you for sharing and for the tips, I?ll keep a note of those

MrsMc-I had seen a consultant privately (through a healthcare scheme) and typically got my bfp on a saturday when the epu was shut and I couldn't maket he midwives on the maternity suite understand that the consultant had said that the sooner the better, the consultant had given me his mob number, but I couldn't find it, so managed to get a receptionist at one of the private hospitals to give it to me (still don't know how I managed it!), the consultant met me on the Saturday afternoon in his jeans and gave me the prescription, unfortuately as I said that baby wasn't going to happe, but they said to keep the Clexane for next time, so next time injected for 2 weeks before going to epu(rather stupid, but I didn't want to tempt fate!).
I know in the Lesley Regan bk it talks about anti-phosphilid being triggered by a previous birth, but I don't know about factor 2.
It's just a case of hoping like mad now.
My advice-get the consultants number (or test on a weekday!)

Sorry about the bad typing in last post!

Hi MrsMcJnr. Firstly, I am so sorry for your loss. I haven't been able to read all your posts and hope you have had some good feedback so far, but I wanted to say that I have a prothrombin gene mutation too. I also have the Lupus anti-coagulant and possible an issue with Protein C. I don't know if my genetic mutuation is the same as yours, but we discovered mine during tests that were done on my father who suffered from clotting problems and DVTs all his life. As it happens, I have been lucky with my pregnancies (3 carried to term, one ended in an ectopic, which was nothing to do with clotting) and since I have never had a DVT, I have only had to inject myself with heparin or tinzaparin post-natally. I also take blood thinners now when I go on long-haul holidays. Like you, I should never have been on the Pill, and thank god, I have never smoked.

Where abouts are you? Are you in London? I am looked after by St Thomas's Haemophilia Centre and they have been brilliant. It is worth asking for referrals to haemotology consultants for advice about managing your condition and I would really recommend it, but do remember, it is absolutely possible to carry a baby to term when you have blood issues. And it is also far better to have found out now when you are young than leave it and suffer a serious DVT later in life. Feel free to CAT me if you want to chat further, but good luck and take care.

What a nightmare Jossie! maybe I?ll make a note to ask the consultant to give me the drugs up front just in case if the appointment comes before the BFP!

Thanks for your post Wilbur. I?ve never smoked either thank god. I?m just outside Edinburgh. Thank you for making me feel more positive. I am being referred to a hematologist so hopefully that will happen soon. I may well CAT you when I know some more about all this, thank you!

That's good that you're seeing a haemotologist - a lot of these genetic tests are so new, and they're developing all the time, so a GP might not know about all that is available. Good luck with the appt and I hope you get some clear advice and answers.

Hi Again

How are you doing?
There is plenty of help around here, I hope you found some comfort.

I Really hope you do get a BFP this month, that would be wonderful.

In regards to your question about taking asprin straight away, I probably would but perhaps you could get some advice before appointment, just ring them and tell them the news, I'm sure they'll get back to you asap.

Fingers very crossed, love Uki

Hi,

I just wanted to let you know that I have Factor V and was diagnosed with this when I got a blood clot in my lung when I was 11 weeks pregnant. It was very scary and painful so the fact that you have found out you have this before you get any clots is a massive positive! I have been injecting Clexane twice a day ever since and am due to give birth in 4 weeks. I won't lie, the injections aren't fun but it does just become part of your life and it isn't forever. I know how panicky you must feel (I know I was) with all the confusing advice/information but honestly it has all been rather straightforward. I have a brilliant obstetrician who keeps a very close eye on me but apart from the injections my pregnancy has been pretty much normal.

Anyway, just wanted to reassure you that you aren't alone with this and that it certainly isn't the end of the world (although it may feel like it right now).

Sending lots of love,
Aqua xx

Thanks Wilbur

Maybe I am stupid but I?ve decided to take 75mgs of aspirin during the 2WW. I am flying a lot (albeit short haul) with work this month and I just feel happier doing something just in case I do fall pg. Do you think I am silly?

I?m ok Uki I do feel that pregnancy just got a whole lot harder though I know that doesn?t have to be the case but the prize just feels further out of reach at the mo. Hope you are well

Hi Aqua ? that clot must have been really scary thank you for sharing your story with me. I really appreciate it.

I don't think your silly, I think if your flying it's a good idea, i think it can only do more good than harm, lots of older people take asprin to prevent stroke/clots and they are not diagnosed for thrombophoilia.

I'm on 100mg and I'm only borderline thrombophilia.

Didn't the doctor give any advice, say to take it if your flying? Also make sure you drink plenty and get up lots, I'm sure you know that though.

Thanks Uki GP only said to be careful on flights i.e. wear the socks, don't drink coffee or alchol etc but she said she knew next to nothing about the condition. Have you made any other lifestyle changes?

Glad to hear your BP is getting better mine has always been quite low. Re the aspirin, thanks for sharing - Oh! I?ve been taking ½ a disposable one after dinner. I?ve had a stomach ulcer in the past and didn?t want to risk another but maybe it?s still too strong and that is why I have a bad tummy and cramps (sorry if TMI ) rather than the fact I am in the 2WW. Damn, was getting hopeful!

Yes definately wouldn't take disolable ones, not good long term. the ones I take are called CARTIA they are especially formulated for blood clotting. They are absorbed in the idigestion tract rather than stomach, so meant to work better , i.e straight to the blood stream.
You also need to take them same time every day. The pharmacy should have these, even if they are called something different there.

Thanks for that tip I got Boots own Cardio EC Tablets (aspirin, 75mg). They are coated and gastro-resistant. The main ingredient it aspirin but they also contain Lactose Monohydrate, Microcrystalline Cellulose, Maize starch, Stearic acid, Colloidal anhydrous siliaca and the coating contains talc, trithyl citrate and methacrylic acid copolymer It says to talk to your pharmacist or doctor before taking them if pregnant but I imagine all aspirin would say that?

Hmmm hello ?.I am ?probably pregnant? woke up at 4am, needed a wee and thought I?d better temp too as I normally get up at 6.15, temp was still good so I rooted around in the dark for a test and did it ? there was a line not the strongest of lines but mostly definitely there. Funnily enough, I didn?t get any sleep after that. I feel numb really, I went through every emotion in the hours of lying there; as you can imagine I am very scared about the thrombophilia and the risk to the baby, I don?t have a haematology appointment yet and I don?t know what to do. I have left a message for my GP to call me about ?something important? I hope she is not too angry with me for disobeying her advice to help. I haven?t had any spotting like last time so I am reading into that that this time might be different; more fool me but what?s the harm in staying positive? I am really excited, just scared.

Can anyone give me any advice as to what I should insist on? scary!

Congratulations - what great news!!!

Yes, see your GP asap, and get her to organise an urgent referral to a Consultant (hopefully within the next week or so).

(When I got my BFP I was already 5wks, saw a consultant at 6.5wks and gave myself my 1st injection while I was there, so it all happened reasonably fast).

Your GP is unlikely to be able to give you much more advice on this, but pump the Consultant for as much info as poss. Good luck!