Need advice for undiagnosed APS and Heparin

[NicLondon1]

Last year I had 2 recurrent miscarriages at around 5 Weeks, and was referred to the Recurrent Miscarriage Clinic (normally you have to have had 3 losses but because I was 41 they fast-tracked me).

Tests found that I had high anticardiolipin antibodies (blood clotting). They asked me NOT to TTC for 12 weeks, so that the test could be repeated. If it were found positive again, I would be diagnosed with APS.
Of course, due to my age, I couldn't bear to stop ttc for so long... and got pregnant!
A private clinician immediately put me on Heparin/Clexane injections (as well as Aspirin & Progesterone) but didn't say when to stop taking it.

I've got the pregnancy to 13 weeks, yay! However, the (NHS) hospital have now said that I should stop the Heparin; NOT because I don't have APS, but because it was never properly diagnosed in the first place. And also because early miscarriages at 5 weeks are more likely due to chromosomal issues than blood clotting issues. (Is this true?!!)

The private clinician agrees, but wants them to put in writing that they have advised me to stop taking it. (i.e. so they would be liable if it goes wrong!)

This seems very risky to me.... if I DO have APS, there is a risk of late-term miscarriage and still birth.. So should I push to keep taking the Heparin? And get a second opinion?
Or has anybody else taken it only up to the first trimester and then had a live birth?

I dont know a lot about this but there was woman in America on a show called Bringing up Bates her name is Erin (Bates) Paine and she lost 3 babies all before 8 weeks. They then did tests and found she had a blood clotting disorder put her on progesterone and Heparin shots and possibly aspirin till the baby was born and she carried to full term and now has 4 gorgeous little ones. She had to do the same for all 4 pregnancies and gave birth around 36 weeks but all babies were healthy. Her sister Carlin (Bates) Stewart suffered the same thing and she just gave birth to a baby girl but needed the injections and medication so she didn't lose her baby. If you want to see more there are episodes on prime video via UpTv where they share there story in season 1 and 2.
I really wish you all the best hun and hope you get some answers soon.

It’s not quite the same but I have a blood clotting disorder called Factor V Leiden and I have to be on Clexane throughout my pregnancy (because of my risk of developing a blood clot) but I can stop the Progesterone and Aspirin at 12 weeks.
I’ve had one successful pregnancy with just Clexane, three miscarriages and now I’m 13 weeks and have just stopped the Progesterone and Aspirin.

Please do not stop Clexane! There are virtually no risks to taking it, aside from the usual ones associated with reduced blood clotting. I was put on Clexane and aspirin for suspected APS (I have lupus and previous history of miscarriage). Took both for about 5 weeks without diagnosis. Consultant was definitely not concerned as the benefits outweighed the risks. My APS test came back negative so I was allowed to stop Clexane but continued low-dose aspirin for the entire pregnancy.

Especially since you've tested positive for APS already, I would stay on Clexane at all costs. Second opinion is the best option. If you're close to London, try the London Lupus Centre founded by Professor Graham Hughes. You don't need to have lupus, he's a world expert on APS (aka Hughes Syndrome) as well. All the doctors there would be far more familiar with cases of APS and can advise based on experience.

Thanks so much everybody!

I've managed to get hold of some Clexane but had already stopped for 4 days so am paranoid I've already done some damage... hopefully all will be well.

Thanks @PastelRainbows I will contact them!

Dear @PastelRainbows, may I please ask you regarding London Lupus centre, as I have been recently diagnosed with APS while planning for pregnancy. Do you know if it is possible to get a referral there through NHS? Or is it easier to go private? I came across them recently and was thinking to get an appointment with one of the doctors. Would you recommend there anyone in particular? Thank you in advance x