Antiphospholipid syndrome (APS) aka Sticky Blood. Advice please.

[SunshineAndRainbow37]

Hello!

I have not long found out I am pregnant, still very early on so taking things one step at a time due to 3 previous losses. I had tests done last year after my third miscarriage and my levels for APS came back raised and over the threshold of what they should be and I’m aware that when pregnant these levels raise even more, my NHS fertility clinic consultant said they would give me aspirin and heparin in my next pregnancy from a positive pregnancy test and they would give progesterone from an early scan. This was told to me in a video call with my consultant. I then got my letter through a couple of weeks later which stated everything we had spoke about and test results and she mentions about me having aspirin, heparin and progesterone in my next pregnancy, she then goes on to say the guidelines suggest aspirin and heparin from a first pregnancy test up until 34 weeks gestation and progesterone once an early scan has been done.

I called my fertility clinic nurse line yesterday and they said it was for my GP to prescribe it, not them, which I thought it would have been them, with it being their suggestion of the protocol. However I did as they said and spoke to my GP practice and told them everything and showed the letter for proof. My GP practice are trying to say that the aspirin and heparin are also from a first scan, not a positive test, which I have told them that’s not the case, it would be too late by then, because my blood clots and stops the blood supply getting to the embryo, which is literally what we discovered during all these tests. They said the letter doesn’t state it well enough for them as it’s a guideline that my consultant mentions, not that it’s what I need, even though she is referring to the guideline because that is what I need! They then said that the fertility clinic can prescribe it so to go back to them, at this point the fertility clinic was closed and is still closed now for new year.

As you can imagine I’m in such a panic over all of this, because of my history, I just want to know I have done everything in my power to try and prevent another heartbreaking loss and once again healthcare professionals are denying me what I have previously been promised and I’m basically crying and begging them to do what is black and white in front of them the protocol I need to help me hopefully have a successful pregnancy.

I have been taking 75mg of aspirin every day since 3DPO anyway, but I’m worried that my levels will rise and my blood will clot too much and that I should have the heparin injections because it’s what I have been told I need and I am entitled to them, yet being denied them.

Has anyone else been in a similar position at all or does anyone have any advice on what I could do about the situation I’m now in?

If you managed to get through all of that, thank you and I appreciate it in advance.

Happy New Year also!😊✨

Hello and congratulations! What a worrying time for you. I have/had APS discovered after 3 losses. This was 21 years ago now but I took aspirin from pretty much conception through to about 38 weeks with all my 3 children. I hadn't been prescribed anything else. Plus weekly scans up to 12 weeks. You're right the important time is from conception to pre-scan, your GP surgery have got it wrong (based on my knowledge from 20 years ago!). Keep on with the aspirin and get back in touch with your fertility clinic as soon as they re-open but I'm sure as long as you're taking the aspirin that will be ok at this early stage. Very best wishes to you.

For something different to you but I was on heparin from 7 weeks pregnant this time around. My GP was happy to issue the repeat but the first prescription needed to be prescribed and picked up from the hospital
pharmacy in the first instance. I’d possibly contact your clinic once they open again and ask for the initial dose doing via them.

Are you able to get a private prescription to tide you over until you have the scan?

Thank you all for your replies!

@Lifeispeacefulthere my GP get a lot wrong to be honest, any time I talk to them about something regarding fertility or my losses, they just have no idea about anything, I’m having to be the one to educate them, so I don’t have much trust in them unfortunately! I’m going to call the fertility clinic first thing tomorrow, thank you!

@Thegirlhasnamechanged thank you, yes I will ring them tomorrow when they reopen and hopefully get to the bottom of it all!

@bk1981 potentially, would I just get in touch with a private doctor to see if they could?

There are online private companies like plan my baby that might be able to quickly help you out. I used them when I couldn't get hold of my consultant after finding out I was pregnant again.

Yes @SunshineAndRainbow37 go privately (I was on anti clot injections from start till after birth but did it all privately)

look for private in your area or you can do online private GP - there are loads around just ensure they do help with pregnancy related requests

You can get cyclogest from an online pharmacy- look in the hrt section. Just to tide you over. Speak with a private consultant- they can prescribe for you over the phone. You need to go back to the fertility clinic and they need to prescribe. I had this issue with my second pregnancy and the gp absolutely refused to prescribe anything despite multiple communications from my consultant. It’s very scary. Hope you are okay.

I had this for Factor V and yes the first lot of heparin came back from the RMC hospital pharmacy (so ibadan to ask GP to urgently refer me back to the RMC, then i saw them 3 days later, then I got the rest of the heparin from the GP).

So if your private dr is thr one who initiated the tests, he should give you heparin then instruct GP to do so

i am on asprin and to take two a day , so 150mg .. most other people I have spoke to are taking tow also, can you double the dose and take two 150mg daily if it would help put your mind at ease ? I am taking due to my age and risk of pre eclampsia, not for APS.

Just thought I would update you all, thank you again everyone who commented!

I spoke to my NHS fertility clinic today and told them everything that happened with my GP, the head of fertility called me back once it was passed onto him and he was appalled at how my GP practice handled the situation and said he was sending a letter over to them with clear instructions and that my care plan is not to be dismissed or neglected the way it had been and he has prescribed everything that I need for the first month and then my GP needs to continue the prescription going forward!😊

Well done!

good luck, wishing you an amazing pregnancy x

Thank you so much!💖

Hello! So glad that the fertility clinic have stepped in and hopefully with the new communication your GP is more receptive! I just wanted to pop on because I have also just had this diagnosis after 4 losses and am very newly pregnant.

I was seen by my local recurrent miscarriage clinic who also recommended the same drug combo - aspirin, progesterone and high dose folic acid plus Clexane from a positive test. My GP did prescribe with the letter from the gynae consultant so I do think it is a normal way of operating! It’s so good to connect with someone going through the exact same thing.

All the best with your pregnancy.- hopefully this one works for both of us!

Glad you got it sorted OP. It’s difficult with APS to assess what treatment is needed, in some women Asprin will be enough but in others it’s not and because we don’t know, everyone gets both.

depending on when your miscarriages occurred should inform on how long you take the Heparin for.

You’ll take aspirin right the way through till usually 36weeks, you need to stop it so that your blood isn’t too thin to prevent excessive bleeding during birth. They will advise you of this nearer the time though, once your start normal maternity process you should be assigned a consultant to talk through pathways and any risks for birth plans.

the heparin as I say depends on your personal risk factors. I stopped taking it at 14 weeks once the pregnancy was established, (I had no other clotting history outside of x 3 mcs, all occurred pre 12wks) then I had growth scans and blood flow checks )they listen to the flow of blood through your umbilical chord) every 4 weeks in addition to normal maternity care protocols.

dont double the aspirin dose as previous poster suggested.

not many medics understand this condition in detail. I am a reader, I read all the books, and when I met my ‘specialist consultant’ he had to get the text book off the shelf himself to check some basic info. It was clear I k ew more than he did. I understand it’s difficult for them to know everything but, the lack of basic understanding was quite astounding. Lots of women on here can help if you feel you have more questions.

good luck, hope you get all the support you need now and welcome a lovely baby in 2026 x

@WittyBiscuit so sorry to hear about your previous losses!
Yes it sounds like we have a very similar protocol, and it is nice to be able to relate and not feel alone in such a vulnerable time! Sending you lots of luck and love for your pregnancy!✨

@StealthMama Thank you so much for this message and your knowledge on it all! I’m going to screen shot your message so that I have it handy if there’s anything I need to bring up at any appointments going forward! I haven’t doubled the Aspirin, the fertility consultant has always said 75mg, so that’s what I’ve stuck with :) I had no idea about the flow checks so thank you for mentioning that! Yeah I’m a big reader also and always fall down a rabbit hole of research, it is disappointing when GP’s don’t tend to know things to do with fertility and pregnancy, I have had this happen a lot with my GP, I’ve felt like I’m the one telling them everything, when it should be the other way around.

I really appreciate you reaching out and thank you so much for your well wishes!x

The process definitely flows much better once you are in the maternity care pathway. Also they should offer you early scans … think I got 8w, 10w and 12w then the 4 weekly checks kicked in.

I think now you self refer to maternity, if you havnt already go your hospital website and look for maternity services there’ll be a form to you fill out, then they’ll get in touch with your first appointment.

how many weeks are you now?

@SunshineAndRainbow37 thanks! And you too! I’ve had a little spotting yesterday and again this morning. I’m hoping it is just irritation from the pessaries but I guess only time will tell… EPU not too interested at this stage! I have my placement scan next week and the nurse said yesterday to just do a pregnancy test in around a week or to go into a&e for heavy severe bleeding or pain. This limbo period is so tough!

I know this thread hasn’t been commented on for a few weeks but hoping someone might see.

I was diagnosed with APS in January two days after I found out I was pregnant following 3 MC and a pre-term birth. I was already taking 75mg of aspirin and then started taking heparin from that day. I had a scan at 7 weeks which looked ok but a repeat yesterday showed baby stopped developing a week later and there was no heartbeat. I’ve gone with the surgical management option and they’ve said stop all blood thinners and see my gp for a referral to a specialist but that I shouldn’t take anything until a next positive test if we choose to try again. I’m worried and sad and just after any advice.

@Diamond89 I am so sorry to hear about your loss and your previous losses also, sending you lots of love and hugs💖

I originally posted this thread when I was pregnant and was taking 75mg and 7000IU Tinzaparin, my first scan at 6w3d was fine but I had quite a large hematoma covering the top of the gestational sac, I was due to be rescanned at almost 8 weeks but a few days before that around 7w3d I started bleeding and then my scan confirmed the miscarriage. I’m in the middle of having talks with my NHS fertility clinic to see if doses can be altered next time. I know some people take 150mg of aspirin, but I would consult a doctor about that before changing any doses. What dose of heparin were you on if you don’t mind me asking?

Also have you had all the testing done at your fertility clinic along with your APS testing? And have you had any discussions about progesterone pessaries? I was supposed to have progesterone from a positive scan but didn’t get given it. I am also waiting to hear back about results as I had cytogenetic testing done on the baby to see if it was chromosome related, I had this done with my loss before this one also and that came back with Triploid Syndrome. You could ask your hospital about the testing side of it also if you wanted to

i’m really sorry again to hear about what you have/currently are going through. Sending you all the baby dust for the future✨

@SunshineAndRainbow37 thanks for your reply and sorry for your losses too. I was on 4500IU of Tinzaparin. Are you still taking anything now? I’m stressing out a bit about stopping both immediately. I’m booked in for surgical management on Wednesday. Had a read about the risks of blood clots so probably need to speak to the doctor at the hospital before I go to make sure they’ve got it right. They suggested either surgical or medical management in hospital to monitor and also so that they can collect tissue for testing. I don’t think I can face looking 😔
No I haven’t had any further testing. I found out about having APS through nhs recurrent MC clinic. I did start on progesterone twice a day after my first scan when I had a bit of spotting. I really thought that it would be ok this time.

You too x

Hi, I’m so sorry you are going through this. It’s all so terribly unfair. I also ended up losing the pregnancy I was speaking about on this thread unfortunately. The recurrent MC clinic have advised to try again and same as you to start on the same protocol at positive test again. Managing the hope with the grief is very difficult.

if it’s any consolation, I’ve had surgical management twice previously and found it very calm and well managed. I hope it all goes well for you. I did stop all my blood thinners, aspirin, progesterone etc. as soon as my miscarriage was diagnosed as I couldn’t bear to keep it up and I didn’t have any problems.

I am trying to start my aspirin from ovulation this time rather than waiting until a positive to see if that has any impact. I’ve not had a conversation with the recurrent MC consultant since my first appointment with him, but he’s said this is fine and fine to try again via his secretary when I’ve called for advise. I really hope you are both doing as well as possible through all of this!

@WittyBiscuit thank you for your reply. I’m so sorry to hear your pregnancy didn’t work out either. That’s reassuring to hear you had the same advice.
I’ve had a tiny bit of spotting today and I’m just hoping that it stops and that I can have the mva on Wednesday. That’s the earliest I can have it. I just really don’t want to go through the pain and having to collect everything for testing. It’s just so crap x