Just diagnosed with thrombophilia & now pg! help!

[MrsMcJnr]

Ladies, thank you for reading This is my second thread on this subject! So I am sure many reading have helped me enormously already

Brief re-cap, 2 weeks ago (exactly!) I was diagnosed with thromobophilia. I have a G20210A prothrombin mutation. I do not know yet if I have a factor V Leiden defect too.

I had a MC in March at 10 weeks. It will have been my first baby. 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 2 weeks ago (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 haematologist 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 have been taking gut friendly aspirin on my own steam (thanks for the advice Uki).

I have just found out today that I am ?probably pregnant? I?m cd30 and 14dpo so still very early (last BFN was on Monday, 11dpo) there was a line not the strongest of lines but mostly definitely there. 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 hold off TTC 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.

Any advice gratefully received, thank you so much

Hi MrsMcJnr
I have factor V leiden mutation (heterozygous) and am now 22 weeks pregnant with our second. I've had extensive testing and consultations with haematologists and high risk obstetricians. Consensus has been that as long as there is only one risk factor present (ie no other clotting factor defects, no smoking, watch weight while preg, etc) the risks are fairly low for the baby and yourself. I'm taking low dose aspirin (as I did last time) and had 6 weeks of heparin after the birth of ds(by c/s) as this is the most likely time to clot. I also had an extra scan to check growth at around 30 weeks.

I had ds in Australia and am now in the UK - management has been the same in both countries. I even threw in a long-haul flight to Oz and back at 12 weeks this time - just wore compression stockings and kept mobile (easy with a toddler!!).

I was freaking out when I found out (when I was first pregnant) so I can understand how scary it is. The good thing is that you now know about it and can take extra precautions - better than not knowing.

One last thing....DO NOT google to find out information. Some studies in other countries have scary results. I chatted to my obs about this and many are biased my generally poor obstetric care.

Goodluck with your pregnancy

Another one wishing you well today with the consultant, MrsMc.

Congrats, MrsMcJr!! And I am so pleased your GP got you an early appt with the haemo people. I'm sure your appointment this morning will help you feel easier knowing you are being looked after. As I said on your other thread, I also have experience of genetic prothrombin mutations and have had clexane / tinzaparin treatment post-natally. It's fine once you get used to it! Good luck and do post here about what your consultant said (I'm being nosey, but interested in seeing how treatment might vary from my own!).

Thank you all so very much for your support and affection . Things went quite well yesterday but only because you had all taught me so much and I knew what to expect. I got there to find that Consultant was on holiday and I was to see Registrar instead. I didn?t mind. She was lovely (and 7 months pg) she took my history and told me to carry on the aspirin and that I?d done the right thing taking it (phew!) she said that they obviously could not tell if the MC was due to this or something else and the fact that there had been no MCs in my family or severe clot problems in spite of the gene boded well. She wanted to speak to Consultant about giving me Clexane and then sent me to the EPU to arrange a scan. The sonographer?s refused to do a scan because I am only 5 weeks today and a row ensued between them whilst I waited for 2 hours. Finally, the Reg conceded that the sonographer might not be able to confirm that the pg was safely in the womb and not ectopic so early and therefore I have to go back on Monday for a scan, blood tests and to be taught how to inject the Clexane which the Consultant has confirmed she?d like me to have. I then have to go back for weekly check ups. I was a bit anxious about delaying another week before starting the meds but the Reg said that if it is an ectopic (though there is no reason to suspect that) it would be dangerous to take the Clexane. What do you all think of this? Also, are there any side effects of Clexane?

Thanks so much for your continued support Lulumama, Hopeitwon?tbebig, Glimmer, Rubles and Wilbur ? thank you

DD1 ? thanks hon can?t believe how far along you are!! hope you are feeling good!

Thanks Auschick ? I really appreciated you sharing your story hope all goes really well for you.

hey MrsMc
I haven't had to do Clexane myself yet but someone with more experience will be along in a minute - just wanted to say I'm glad it went well!

Fingers crossed for your scan next Monday, then! Pleased that you seem to have a supportive consultant/registrar!

Thanks for the update, Sounds like they are looking after you alright.

I'm glad the asprin was approved, otherwise I might be in trouble.

Oh wow we can let it all sink in now
I have to agree that 5 weeks seems a bit early for ultrasound. It will be much more accurate a little later.

fingers crossed for monday !!

I think that sounds good, no experience of Clexane, but the weekly check-ups sound very reassuring.
Are you alright otherwise? No spotting like last time?

Hi Mrs McJnr-I was told to take the Clexane, but first time I had HCG tests to check that the levels were going up correctly (which they weren't as that onr would never have made it clexane or no clexane), this can check for ectopic apparently, second time I was naughty and didn't tell the epu until I was 6 weeks pg (but had taken clexane since the bfp) as I couldn't face waiting for calls re the hcg levels, it was a silly thing to do, but I did keep a close eye out for ectopic symptoms. Basically the clexane stays in your system for 12 hours, if there were problems with an ectopic pg then the bleeding would be much worse if it was within that 12 hours, but my consultant was happy to start me at 4 weeks pg. 2nd time, when I told the epu I was pg they scanned me (6 weeks pg) to check that it was in the right place.
My main side effect has been bruising ( and still is), I found the thought of injecting worse than doing it, all the medics have different ideas of how to do it, what I have found works for me is to lightly stroke the needle over the surface of the skin, to find a less sensitive place (surprising how this differs over an inch or so), then do it. It seems to be easier if you relax for a few minutes beforehand. The other advice is to carry a couple of spare injections in your bag, in case you get stuck in traffic etc as the injection has to be done at the same time each day.
I am having headaches, but I think this is due to being pg rather than the clexane.
Sorry this is such a long post, if you have any questions feel free to ask.
Good luck

I'm glad it went well MrsMcJnr. It's good to find someone you can trust and ask lots of questions. Sounds like the Registrar was nice.
I had clexane for 6 weeks (after the birth). Also work in the health profession, so have given it to lots of people over many years. It stings - some days you hardly notice, others it stings like hell for a few minutes . You'll get some nice bruises where you inject. Try not to rub after you inject as this can make the bruising worse. You will be prone to bleeding, so be a bit careful with the razor and you can get bleeding gums,etc. (but you can get this from preg alone anyway). You will probably also get your platelets tested once or twice along the way (by bloods tests).

Goodluck with everything and try and enjoy your pregnancy. Morning sickness will probably take your mind off these worries pretty soon . All the injections will be worth it in about 35 weeks time!

Thank you all where would I be without you?

Rubles otherwise fine thanks, no spotting , no migraines only mild cramping (ligaments), enormous sore boobs, very tried, thirsty, hot and gassy no sickness but then it could be too early or I could be one of the lucky ones ? 3rd pg and never really felt v sick.

Jossie ? my hospital seem to have an aversion to HCG blood tests! my lines on pg tests are getting stronger, I plan to use the same one this Thurs as I did last and see if it?s made much difference, not very scientific! Temps are still high too. Last time I didn?t even worry about MC but was in a total panic over possible ectopic so know the signs too ? I don?t have any that I can tell. Thank you for explaining the dangers with ectopics and Clexane, makes perfect sense. Did you see an HB at all at 6 weeks? I know I shouldn?t expect to see one but I so hope I do. Have to say, the thought of injecting is really scary at the mo, do you have to go deep? Is there a lot of fluid to get in? Dr told me that headaches and blood clotting conditions are fond bed fellows Your advice is so helpful, thank you!

Auschick ? thanks I think I need to hear the warnings, stings ? ouch

Hi Mrs McJnr-I did that with the pg tests as well, especially because the pg in Feb I only got faint lines (it was a chemical pg) so I felt a need to reassure myself that it was different.

The needle isn't very long and the amount of fluid is small. I still bruise sometimes (thought I cracked it but then got it wrong again-the worst one being when DS1 walked into the bedroom as I was doing it (I thought he was asleep), I turned round in shock as I didn't want him to see and gained a lovely bruise for my efforts!
All you will feel is a little resistance as you push the needle in first (I don't watch) then you feel it go in easier then just inject. It does sting occasionally, but more if you accidentally get a little drop of it on the needle before you put it in.

Basically you'll find your own way that suits you. I won't pretend it is the highlight of my day, but I don't dread it and anyway it is a means to an end.

Please don't worry you'll be fine-give it a week and you won't think twice about it-mind you I do feel a little as if I'm an addict if I'm out for the evening and have to retire to the toilets to inject!

so nothing confirmed then yet?

can I hi-jack for a mo?? I have had 3 premature births and 2 miscarriages. Am currently 15 weeks pregnant and on asprin on the advice of my consulant. But when I brush my teeth they bleed like hell, is this due to the asprin??

Hi Sparkly
I can answer that if you like
Sorry to hear of your m/c's

Gums become more sensitive in preganancy in general, so bleeding is normal, maybe use a soft toothbrush and be a bit gentler.
i have been told off by my dentist for wearing my gums away, because i'm a scrubber.

i haven't got any side effects from asprin, but read the leaflet that lists them if your curious.

scrubber!!! lol I really go to town on my teeth too, but atm, I keep gagging and puking when bruhing my teeth, always lots of blood...

Jossie my lines are definitely getting darker now so hopefully, this is for real. Thank you for all the honest info on the meds, it?s hard waiting to get them and worrying and you guys are really taking the edge off

Paula pregnancy in the right place couldn?t be confirmed last week because I was too early but I am having a scan on Monday and if the baby is in the right place (fingers crossed) I?ll be given my meds to inject, in the meantime, I am on aspirin.

SparklyGothKat & Uki ? I?m a scrubber too! I?m not allowed a normal toothbrush but have to use an electric one so I don?t brush too hard. My gums are bleeding a bit too (and my nose ? just a tiny bit) I need to use dental floss more but no headaches since taking the aspirin so that?s great.

Sorry to hear about the MCs Sparkly all the very best for this pregnancy!

Hi Mrs Mc, had my 12 week scan today and have been redated to 13 weeks! Have been told that due to the clexane I will probably be scanned frequently from 28 weeks to check the growth, don't know if they will look for too much or too little growth. But it felt so good to see the LO as this is the furthest I've got inthe past year.
Best wishes

Fabulous news Jossie so delighted for you!! I bet you are feeling so much better now!

It's going to be hard keeping the sex a secret with all those late scans - do you want to know? I've always said I wouldn't but curiosity might win if there are lots of opportunities!

I didn't want to know with DS1, was mildly curious with DS2, this time-well at least i won't have to decided whether to find out or not!
Really don't mind what it is-I love my boys so in a way a girl would seem strange, but them am interested about what a girl would be like.

Sorry then, not them!!