Antiphospholipid issue and TTC - what treatment did you receive?

[davidrosejumper]

I have recently been tested positive on antiphospholipids, and we are currently TTC. It was discovered after recurrent pregnancy loss by the pregnancy team. I was hoping for some recommendations from others with clotting issues on how their pregnancies were managed. I am at a local hospital currently, and they seem quite confident they could manage me having a healthy third pregnancy. We have no living children yet, and I so hope a next time things would work out for us. It was quite a shock to find out that my blood essentially was harming our poor babies.

I am currently not on blood thinning drugs, as it was so recently found. The OBGYN consultant's treatment plan for now is waiting for a positive result, then check for a heartbeat and that the pregnancy is in the right location at week 6. From that moment onwards, they want me to go on heparin and aspirin (150). I am a little worried, having read some contributions from previous years, which suggest that others were put much earlier on blood thinning medication, as soon as they tested positive. I was hence hoping to get some insight in what treatment others have been receiving, and on what basis, so I can better advocate for myself, if needed.

Hopeful bump

Bump

After three MC I tested weakly positive for antiphospholipid syndrome.

I started low dose aspirin, 1x75mg, as soon as I got a BFP.

I then phoned my hospital's early pregnancy unit and explained that I'd had a recent diagnosis of APS after 3 MC and that I was anxious to be started on heparin asap. They were absolutely brilliant and had me seen within a week and started on heparin. I don't think this is the conventional route but it's worth a try!

Good luck. I know how tough it is managing hope Vs fears with this.

I wasn’t ever officially diagnosed with a blood clotting issue, but after 4 miscarriages in a row I took it upon myself to start myself on 150mg aspirin a day and took it from 1dpo.

I’m now currently nearly 24 weeks pregnant!

I’m consultant led and my consultant has confirmed I should remain on the aspirin and did say had I been under their care from the start they’d have recommended I take it exactly as I had done.

I’m so sorry for your losses and wish you all the luck x

Thanks so much for both of your responses! I am so sorry that you both had to go through miscarriages as well, but am very pleased that you have gone on to have healthy pregnancies. Good luck to you, @Moominmiss, on this one! It would be wonderful to hear how you are getting on.

I tested properly positive for clotting (well above 40, where I think 10-40 is the weak positive). The consultant has indeed said that I will be under her care, and will have more check-ups. However, I am a little worried about the fact that they only want me to get started on aspirin and heparin once a heartbeat is seen somewhere in week 6. I just worry that damage can already occur before that.

We had a horrible loss a few months ago, where we lost our second pregnancy at 23 weeks because of how blood clotting had affected the placenta. We are starting to TTC again in June (I first wanted to get the vaccine jabs out of the way, and recently had my second). I really hope it will happen for us, and we can bring the next pregnancy home as well!

@davidrosejumper I will of course keep you updated with how things continue to progress.

That was my concern, that by 6 weeks, or even a positive test any damage could have already been done.

I’d only had basic blood tests done with the fertility specialist after my third miscarriage. They’d said they’d look into other tests, such as the antiphospholipids etc, but in the mean time I miscarried a fourth time and had spent so much time doing my own research. It was after that I just decided I had nothing to lose by starting myself on the aspirin. But I decided to take it from ovulation as I’d read enough to suggest that aspirin could help aid implantation in the event of a blot clotting issue. I figured if that was my issue, then having sticky blood would make it difficult for the egg to even get where it needs to be to implant.

The majority of my losses happened by 6 weeks so I wasn’t prepared to just wait for it to potentially happen again. By starting it earlier I felt I was actually taking control of the situation.

I can’t even begin to imagine the pain of a loss at 23 weeks. My heart truly goes out to you.

I’m sure with the right medical help you will be bringing a baby home very soon.

Good luck with your vaccinations, I had my first this week!

My 3 losses were at 7 weeks, 11 weeks and 5 weeks.

If I become pregnant again I will 100% take aspirin from BFP at the latest and will push to get heparin by 5 weeks.

I agree that it doesn't seem a good idea to wait until a first early scan to medicate for your blood clotting.

Aspirin might be enough to get you through to then though to start on prescription-only blood thinners.

There are some easy other things you can do to help your blood like keeping very well hydrated and eating cayenne pepper which has blood thinning properties (I'm not sure how much I believe in the latter but I just thought no harm in adding it to a few meals a week).

@Moominmiss, thanks so much for your kind reply and the sympathy. I am so sorry you had to suffer a fourth loss while waiting for further tests. I have been starting to look into some of the science now too, which thus far backs up your argument on the implementation issue. I hope you did not have too bad a reaction from the jab? Did it take long for you to get used to giving yourself the heparin injections by the way? And are you able to enjoy your pregnancy?

@INeedNewShoes, thanks so much, also for the tips about cayenne pepper, which we have in the spice cupboard, but did not know to use for this! I hope things will work out for you as well soon.

I am mid-late thirties and will have to start again coming cycle, as time is not on my side. I am trying to do everything I can to make sure we have a good shot. Really throwing everything and the kitchen sink at it, so no booze, no caffeine, no heating up in tupperware, the whole shebang. We were a lot more relaxed previously, but the innocence has well and truly gone now.

@Moominmiss, I have gotten my BFP on Wednesday, and got today in touch with the EPU (thought it might be a fluke/EVAP at first, so wanted to do a bit more testing). They called me back immediately, and I have now had permission to go on 150mg aspirin, so am starting that tonight, at 4 weeks. They want to do a scan in a week or two to get started on heparin, and hopefully not too much damage will have been done in the meantime.

How are you feeling? You must be close to 29 weeks now! What type of appointments/management are you receiving? Are there more check-ins?

@davidrosejumper that’s great news that they’ve started you on the aspirin. I have everything crossed it does what it did for me!

I’m feeling great thank you. Although I have just had a diagnosis of gestational diabetes. I’m 28+4 today!

As for extra care/appointments, with regard to my previous losses and being on the aspirin, none of it has had any bearing on my care. I’ve not had any more scans or appointments than a standard pregnancy. I did have a consultant appointment but that was purely because I’m having a c section.

I think I will get a few more appointments now following the GD diagnosis but the aspirin etc shouldn’t require any monitoring or anything.

Still sending you so much luck!