Pregnant before APS diagnosis confirmed - re getting treatment

[TwinTree]

I have had 2 miscarriages (at 12.5 weeks in October 2024 and 5 weeks in June 2025). We've been trying for years, taking fertility medication, and had recently been referred for NHS IVF.

A recent blood test showed that I have elevated antibodies, so they said it's probable APS (Antiphospholipid syndrome). I was due to have another blood test to confirm this in October (as you have to have 2 tests done 12 weeks apart).

I have just found out that I'm pregnant again, which means I can't have the second APS test as the results may be skewed. Tommys and my fertility clinic both recommend that I should start treatment (aspirin and heparin) for APS, as based on the first blood test and miscarriage history, "it's safer to assume that I have the condition and treat me for it than it is to not treat me".

However a midwife today said that my EPU won't prescribe (or even see me before 8 weeks) because I don't have a diagnosis (and I haven't had 3 miscarriages!!).

I am terrified of losing my baby because of the policy of this EPU. Has anyone been in the same boat? Were you able to get treatment? Any idea where else I can turn to?

Thank you in advance

Go back to the fertility clinic who recommended it is probably easiest/quickest.

Thanks for your reply. Unfortunately the fertility clinic said it needs to be prescribed by EPU. I asked for a letter from them but they won't do it because it's not an official diagnosis yet.

Without an official diagnosis you’re going to struggle OP because they could arguably be negligent to prescribe. I am sorry it’s a really tough one x

Thanks for your reply. It is a tough one, causing lots of stress.

It seems to be a postcode lottery unfortunately. When I spoke to Tommys they said in Manchester EPU they would prescribe it. I'm in London.

Thanks x

Are you under the care of Tommys? I had very elevated APS antibodies, but my second test came back as normal. So my third pregnancy I didn’t have the medication due to them saying I didn’t have it, which I then subsequently miscarried. But Tommys have said next pregnancy I will be on aspirin & herapin & they will prescribe it. They also sent a note to my GP so it’s on my record about needing the medication

Sorry you’re going through this, I know the stress and worry it must be bringing you.
I was diagnosed with APS by Professor Quenby at Tommys in the Coventry Clinic after 4 miscarriages. When I got pregnant again (during lockdown in 2020), she was able to write the prescription for Clexane, aspirin and progesterone for me. I’m not from Coventry but was referred there under the right to choose from the NHS. For my first set of medication I had to drive all the way to Coventry to pick it all up. I was then given a letter to take back to my GP/EPAU who have honoured it each time I’ve been pregnant since. Now that letter is written and in my notes, GPs, nurses, midwives have to follow the protocol each time.
I know your situation is slightly different as you haven’t been able to have the second blood test. Could you ask the Tommy’s clinic to write a letter with their findings so far and a treatment plan? That may then persuade the GP to follow it? Or could you even get the medication from Tommy’s?
Good luck and I hope everything goes well with this pregnancy, sending best wishes. To give you a little hope…my lockdown pregnancy was successful and I have a soon to be 5 year old. I am also now 22 weeks into a surprise pregnancy but very much wanted and loved. Both times I have had Clexane, aspirin and progesterone from my positive test. I hope it you look back in years to come and have a positive outcome too.

Tbh if the fertility clinic aren’t prepared to prescribe it and won’t write the letter recommending it, then they shouldn’t be recommending it to you. That’s putting another clinician in an unsafe position with a risk that they aren’t willing to take on the basis of your current results.

Your gp won’t touch it, it’s unlikely local EPU would going by what you say. Here the gp would refer to obstetrics but it would be likely rejected as not yet meeting guidelines. Maybe a private clinic?

Sorry the timing is so shit for you, and the stress must be huge. Have you got good support?

You can buy the aspirin over the counter at a pharmacy right now. Its something at least.

Im on 150mg soluable aspirin, fragmin & was also given progesterone pessaries from 6-12 weeks of pregnancy. All had to be prescribed by my consultant at the recurrent miscarriage clinic

Get aspirin over the counter now. And see a private Obs asap for the Heparin

its really unethical what Tommys & your fertility clinic have done. Make a rec but not fulfill it themselves. So I’d also complain. To your consultant & PALS.

good luck.

In a similar-ish situation I went to a private obs who specialised in fertility who wrote me the prescription.

From aeons so, ARGC used to give all their patients heparin and aspirin for something like 6 months, so with one positive test, I'm surprised the fertility clinic are being so useless.

OP, it is possible to do the APL antibody blood tests in pregnancy, I would ask for these to be done. Ideally with the 12 week interval but I think given you’re pregnant already it would still be of use to do them earlier.
It seems very rigid what you are being told, aspirin and heparin in pregnancy are relatively low risk interventions with a big potential benefit if you do indeed have APLS so I’m surprised you’re getting this pushback. Does the EPU have a consultant in charge that you can ask to speak with directly? Or perhaps pay to see a private obstetrician.
it makes sense that the diagnosis is still in question (as you haven’t got the lab results or the miscarriage number to technically meet the criteria) but there should be some flexibility and ability to individualise things - a shame NHS seems very much one size fits all and tick-boxy!
disclaimer - I am not in the UK - not familiar with avenues for you but PP have some good suggestions.
good luck - and congratulations on the pregnancy x

I was diagnosed with Aps by Professor Quenby. Paid around £100 to see her privately ( this was 2015) all bloods done under NHS. She wrote to my GP and asked him to prescribe asprin, heparin and progesterone which he did no problem. I only had 1 positive blood test. My first at a clinic in London was negative. I lost my daughter at 21 weeks after 3 successful pregnancies. Professor Quenby was happy to diagnose APS based on this and the autopsy results of the placenta having clots.
I went on to have 2 successful pregnancies after this treatment. I opted to have private antenatal care with an obstetrician and was scanned every week from 8-36 and had c sections between 36-37 weeks.
You could see if Tommys would give you a letter for your GP to prescribe or look into seeing a obstetrician privately to obtain it that way

Thank you everyone so much for your very helpful messages.

My fertility clinic has now said they will prescribe the medication but only for 3 weeks, after that they said I need to get it through EPU. Weirdly they won't give me a letter to show the EPU!!

Tommys won't see me unfortunately because I haven't had 3 miscarriages, I just spoke to the helpline.

I'm not sure why the EPU are saying 3 miscarriages to me, the APS criteria is the blood tests + 2 miscarriages (or 1 late one which one of my two was). I will try and ask for a second opinion from EPU.

I am also taking aspirin and progesterone already.

Interestingly the only reason I had the first APS test was because the fertility clinic said they wouldn't let me start NHS IVF without recurrent miscarriage investigations first, but I couldn't get this on NHS (with exception of the APS test) because I haven't had 3 miscarriages. So my options were basically wait until you get pregnant (which I only do with fertility meds) and miscarry, or pay for tests ourselves. It's been stressful to say the least.

It's reassuring to hear that some of you have been to able to do this privately, I will look at that route.

Thank you also for sharing your success stories here. That gives me hope.

Many thanks

Please speak to Tommys again, I have had two losses and I was referred to Conventry to speak to Professor Quenby via them.

I had one flag for a clotting disorder at a private clinic and then my second test was negative via nhs, the private clinic were happy to prescribe me Clexane on a positive test and I got about 3 weeks worth, in that time I spoke to my EPU and a gynaecologist there whilst not convinced it was necessary was happy to continue this plan via the NHS based on my one positive on a ‘just in case’ basis.

It’s really hard but if there is one thing I’ve learned in this journey you have to really really vouch for yourself consistently and constantly, I’m always polite and kind but I find being persistent and doing loads of research so you sound like you know what you’re talking about can really help xx

Thank you for such a helpful reply and advice, sorry I didn’t reply, I was able to push to get the meds thankfully! Thank you

Hope things went well for you. I’m reading with interest as I have one high blood result for ApS. One miscarriage and several failed IVF transfers. My clinic wanted to do the repeat test in January- but we are actually moving clinics and the new place said they will treat me as if I do have it. My worry is that I want an official diagnosis on medical records for when ivf clinic pass me off to nhs - if I’m lucky enough to get to that stage. I might be worrying in advance but what are your thoughts- get a retest with the original clinic (who would then write to my GP)
Or leave it?
or ask my GP to do the retest- even though I don’t meet the official criteria?

Hi @HopeWillTriumph, I'm so sorry to hear about your losses.

I can only speak from my own experience, but I have to say I've struggled without the official diagnosis, because the whole system is so disjointed.

So as I said in my first post, the hospital wouldn't follow the advice of the fertility clinic and prescribe the meds off the bat, which made early pregnancy very stressful - I had to really fight for them. Thankfully the fertility clinic gave me a 3 week clexane supply as a stop gap, otherwise I would have been without it entirely for those crucial first few weeks because it took the hospital so long to come round. I then had the same issue again when I transferred from the EPU to the maternity unit (at the same hospital!), and had trouble getting my prescription renewed. Things are better now that I’m under an obstetrician, but that didn’t happen until 17 weeks. So I will definitely be seeking official diagnosis in the future.

I’m now 18+4 weeks and I honestly think it’s down to the meds, in my case clexane, aspirin and progesterone. After two losses a fertility consultant advised me to take progesterone from ovulation onwards (before I had only been taking it after a positive test as that was the advice I had been given). So I do also wonder if that made a difference early on. Interestingly my obstetrician has told me to continue taking the progesterone until 36 weeks, due to pre-term risk associated with APS.

Re your situation - it probably depends a bit on your trust and what they’re like. Interestingly a Tommys midwife in Manchester I spoke to said that under their criteria I would have been diagnosed already (but I’m down south).

I have also heard that you’re meant to get repeat bloods done at the same lab as sometimes they use different measures? Not sure if that’s true, but Tommys are a great source of advice, they may know (or you could call the lab/clinic to check).

Btw some GPs aren’t really able to do APS testing, mine said they could but they results kept coming back as ‘rejected’ because they didn’t get the bloods to the lab quick enough (it’s a really fast turnaround test). So I had to redo it.

Sorry for the ramble, good luck with it all and feel free to message me again if I can help!

Thank you so much that’s really helpful. I had no idea about getting it done at the same lab. And that the GP might struggle to get the tests in time. I think I’m going to try the GP first as it’s free but I would pay for a repeat test at same clinic if I have to because it sounds like it’s worth having that diagnosis confirmed and on my record. Thanks for sharing your experience and I hope things continue to go well for you

The only was I can see around this is to see a private Obstetrician

There is always a possibilty there is some treatment out there.

No problem! I should clarify that even though I had to go back multiple times for the GP testing, because they test multiple vials at the same time I still got a positive result that way, it just meant that some of the vials were rejected at first for some of the measures so it was a hassle. But I kept going to the GP for that test because it was free.

My GP was also not specialised enough to be able to interpret the results, but that wasn’t a problem for me because my fertility clinic were able to do so (just make sure that your next clinic accepts external results, some don’t apparently).

I’ve since found out that miscarriage clinics also do APS testing on the NHS (sadly I think it has to be recurrent miscarriage to get referred).

Good luck with everything. I know it’s a scary diagnosis but I found it helpful to know a possible cause behind my losses, and I’m glad it’s something that can be treated (apparently success rates with meds are good which is reassuring!)