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Miscarriage/pregnancy loss

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Blood Clotting and Aspirin/Heparin

20 replies

Ginger84 · 29/06/2023 20:22

Hello,

I recently had quite a traumatic miscarriage that led me to do some basic investigations on the potential causes. My consultant informed me that based on my tests, the most likely culprit is a genetic mutation I have (PAI-1 heterozygous) that makes me quite likely to have blood clots in addition to the fact that my TEG levels were quite high. I was therefore recommended that for my next pregnancy, I need to take 150mg of aspirin and heparin daily injections to increase my chances of keeping this pregnancy and avoid potential blood clots that could result in another miscarriage. Obviously, I am quite anxious, but at least relieved to know the likely cause.

I am close to 40, so quite worried to keep having one miscarriage after the other without trying everything I can before giving up. I guess the purpose behind this post is to ask whether anyone else had to deal with this with this or a similar blood disorder and followed such a regiment and had some positive outcomes? I would really appreciate some thoughts on this as I am quite unfamiliar with such a diagnosis.

Many thanks in advance.

OP posts:
Ginger84 · 30/06/2023 05:09

Anyone?

OP posts:
Fab973 · 30/06/2023 05:13

I did And have 3 healthy DC as a result. The asprin I took daily even when TTC and the heparin from 12 weeks pregnant to after baby got here. I would recommend taking exactly what they are suggesting. Good luck :)

TheCraicDealer · 30/06/2023 05:42

I did, I’d had five mc (although a successful pregnancy after my first mc) and then was diagnosed with antiphospholipid syndrome at 16w with now 8 week old DS. I feel incredibly lucky that he hung on because there was a significant delay in getting those results to me following my second pre-pregnancy blood draw- I should have been on aspirin and bloood thinner infections from conception. The injections in particular weren’t much fun but the got the job done. Good luck 💐

Ginger84 · 30/06/2023 08:33

Many thanks for your replies, quite reassuring!

@Fab973 in your case, you started heparin from 12 weeks until the end of pregnancy? Not from a positive test result? Did they explain a reason for starting it at 12 weeks? I heard some people were advised to start from a positive test result, others from 12 weeks and others from a positive test result to 13 weeks. Seems there are a lot of variations, but probably based on the condition at hand.

@TheCraicDealer Yes, I am quite dreading the injections but I am hoping they get the job done and help me avoid the trauma of another miscarriage. Did you have to take heparin until the end of the pregnancy?

Thank you again for your replies.

OP posts:
TheCraicDealer · 30/06/2023 08:55

I had to take the blood thinners until 6 weeks post delivery. For a ‘normal’ person having a section it’s ten days, but apparently they’re getting more and more keen on getting women who may have an increased risk of clots on that extended regime even without a diagnosis of a clotting disorder.

I did ask a midwife how women with a needle phobia coped and she said “you just find most just get on with it”, which I was surprised at!

Ginger84 · 30/06/2023 10:38

That’s quite interesting as I was also prescribed those injections for 3 weeks (definitely not 10 days) post delivery for my first DC and there was no diagnosis then. I remember the midwife not bothering at all about it and just telling me to get on with it. I didn’t realise that heparin is that same injection you are prescribed post-delivery.

Did they have to monitor your platelet count when taking it while pregnant and did they say that it has any long term effects taking it for months at a time? What happens in the case of needing a c-section?

OP posts:
CarpeDiem75 · 21/10/2023 22:47

@Ginger84 @Fab973 @TheCraicDealer hi sorry for jumping in this conversation but I am on the same boat the miscarriage clinic put me on 150mg aspirin since ovulation and they have advised they would start me on heparin if I get a positive because my lupus anticoagulant was a bit high.
Iwas wondering at which time of the day you guys were told to take the aspirin?? They told me before bed but it gave the worst acid and stomach pain so not sure if I can take during dinner instead to relieve the symptoms as my gp is not too keen for me to stay on omeprazole the whole time (gaviscon was not helping!)
Thank you!

TheCraicDealer · 22/10/2023 00:11

I was never given any advice on timings, it was only maybe at the start of my third trimester I started to take it at night after I read on here that it was best for absorption. At my pre c section meeting with the hospital pharmacist she asked me when I had been taking it (talk about shutting the barn door, but anyway), I said “I heard it was best to take at night…?” and she assured me that that was right.

Despite having been through the recurrent mc clinic I was only on aspirin from 12w. Even then it was recommended as a precaution by the midwife at my 12w appointment because I’d had high BP in the later stages of my previous labour. It was four weeks after that that I got diagnosed with APS, so I was bloody lucky in hindsight.

I had bad heartburn at nights with both successful pregnancies from about the middle of my second trimester but it was definitely worse with the one where I was on aspirin in hindsight. By the time I got to about 24w the consultant was very happy to prescribe omeprezole. Gaviscon wouldn’t touch the sides, so I sympathise! There must be something they can prescribe to protect your stomach lining in these circumstances, you’re not the first person to be on aspirin for an extended period.

CarpeDiem75 · 22/10/2023 07:40

@TheCraicDealer thank you so much for your reply!! I am just a few days away from my period so I will see what happens and if it is positive I will have a chat with the clinic!!
Hope all is going well with your little one!x

RedPandaFluff · 22/10/2023 12:48

I have a suspected (never confirmed) clotting disorder and my only two successful pregnancies were IVF cycles with aspirin and heparin injections for the first twelve weeks. It honestly feels like we had two miracles and I attribute it to the injections! It was scary stopping at twelve weeks though.

Are they putting you on progesterone and/or prednisone too? I was given these "just in case" and again I'm convinced they contributed.

slowsundays · 22/10/2023 12:50

I am on this pathway now and I'm currently 10 weeks pregnant 🤞

slowsundays · 22/10/2023 12:51

I started fragmin from 8 weeks because I have a higher BMI rather than 12 weeks but some people I know of, especially those doing IVF, were on injections from the embryo transfer.

I've been on aspirin since 5 weeks though.

CarpeDiem75 · 22/10/2023 19:11

Thanks for your answers! Looks like I don't have to worry about it anymore this month again as I have started spotting and cramping at 12dpo so I guess it was not meant to be.. again😴

Littlegoth · 22/10/2023 19:32

@CarpeDiem75 so sorry it looks like this month isn’t to be x aspirin should be taken at night (with your evening meal as it should ideally be taken with food) as it’s most effective when taken then. There was a 10 year Europe wide series of studies, across over 100 hospital Trusts and they found that it looked like timing did have an impact, which is why you were told to take it at night.

They don’t know exactly why but the main theory is that it’s due to the body’s circadian rhythms. Basically the body does certain things at certain times of day, for example the pituitary sends signals out in the early morning to trigger things like cortisol production, glucose release in the morning and so on. This is the same even if you happen to be in a night working schedule, it doesn’t change this internal schedule.

Platelet activity peaks in the early hours on the morning so taking aspirin at night means your regular dose will be metabolised in time to bind to all the brand new platelets and stop them sticking together.

Aspirin can be hard on your stomach. I hadn’t had problems until my most recent pregnancy, but the burn has well and truly kicked in and seems here to stay - omeprazole etc are commonly prescribed alongside aspirin to alleviate stomach acid. I was on two a day in pregnancy but back down to one - beats chugging the gaviscon bleh.

For the original question I have APS (specifically lupus anticoagulant + like you) so take 150mg aspirin every night for life, and heparin or similar from a positive test. I’ve had 2 successful pregnancies since diagnosis, one further miscarriage between and so had progesterone added for my most recent pregnancy which did the trick. I was almost 39 and almost 42 when babies were born. Got my fingers crossed for everyone who finds themselves in this awful club x

CarpeDiem75 · 22/10/2023 20:46

@Littlegoth thank you so much for your reply!!! I am 40 so clock is ticking and no luck so I am really starting to lose hope... I am doing Letrozole as well to help with egg quality and acupuncture!! This is mentally exhausting!

HSCY · 23/10/2023 19:40

Hi

I have been given heparin and aspirin to take by my ivf clinic since my embryo transfer , I have been told to stop these at 13 weeks but nervous to do so as I have had so many failed ivfs and this is the furthest I have ever got . Was anyone else told this to?

thanks

Charlotte390 · 30/12/2023 00:12

Sorry to jump in on this thread, I can't seem to start a new one... I've got a bfp after having a late miscarriage (18+6) at the end of August, and was recommended starting 150mg of aspirin after my positive test, which I have done. My anticardiolipin levels after 12 weeks were exactly at the limit, so my gynae also recommended heparin. I just wondered if anyone knew when this should start and how long into the pregnancy in the case of a late miscarriage?

(I'm currently in the UK but live in Spain so intend to ask all of this as soon as I'm back in a week, just wondered if it should be more urgent with the heparin!)

Ginger84 · 30/12/2023 10:26

@Charlotte390 I don’t know in the case of a late miscarriage. I had a miscarriage at close to 11 weeks. I was told to take aspirin and heparin from bfp until 24 weeks for heparin and 32 weeks for aspirin.

Can I please ask you which gynaecologist do you go to? I need to go to a different gynaecologist as mine is not providing me with any reports and doesn’t seem to care at all. At the moment, I need to go to someone else for a second opinion and follow ups in case I get pregnant again, so would really appreciate any recommendations in this regard. Thank you!

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Charlotte390 · 30/12/2023 10:55

@Ginger84 thank you, that's still useful to know!

I think he's actually an obstetrician technically, but it was just through Warwick hospital as he was the one who did the scan when I had my mc and talked us through the post mortem results later on, so I can't really recommend anyone in particular sorry, unless you're in the same area.

Hklg · 03/01/2024 21:15

Hi @Ginger84 i recently had the pai-1 gene mutation diagnosed too. Also had the teg but mine was normal. I was seen by Dr Regan. She suggested Heparin but did not confirm yet as i have other blood issues and i have since miscarried for a third time in 7 months. I think i will try Heparin next time but we do know our second loss was due to trisomy 21.

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