Diagnosed with antiphospholipid syndrome

[TTCBABYNO2xx]

Re-occurrent miscarriages after 1 healthy live baby who is 2 now.

TTC number 2. On asprin 75mg and if i get a BFP i have to start blood thinning injections.

I feel alarmed this is the diagnosis and worried. Anybody out their in similar situation.

Thanks xx

👋Hey!

A few weeks ago my GP advised my blood showed a marker for this and I have a hospital referral in November. I'd never heard of it before and haven't been formally diagnosed as need a repeat blood test, but I've been reading up on it.

I'd had full bloods following early loss and long time to conceive, all other results were normal range apart from this. My GP had never heard of it, and told me she'd had to do some reading before calling me. My referral is for rheumatology?!

I've since had a BFP and I asked my GP if I should take aspirin, she's told me she's asking the hospital and will come back (I asked last week, no response yet, so I've decided to take 75mg).

I'm sorry you've been diagnosed, did your GP give you any further information?

I have APS - diagnosed nearly 5 years now following reoccurring PEs. There's very few experiences and knowledge about it with what I call 'general' doctors and GPs however, rheumatology is correct to see you if you don't have a main haematology department near you. My GP done a rotation at rheumatology and I've actually changed my GP practice when he's moved just
for continued care! Anyway, there's a lot of great places to support including FB groups. There's a brilliant list of specialists at aps-support.org.uk/self-help/specialists-in-your-area - Prof Dr Cohen and ULCH is the top of the top person as she was linked to the initial diagnosis team with Dr Hughes (APS is also called Hughes Syndrome). If you can get to london, personally I travel a very big distance to there as they will see you face to face approx once a year, frequent video or telephony appointments, direct your GP and local care team on how to support and manage your condition and arrange any tests needed to be again local. They are great especially at getting answers, stability and moving things on when you find a lack of knowledge in your own area. Your GP just needs to make a referral to them and they will see you pretty quickly for initial consultation- just be prepared for a whole day as if you're travelling down they will try do it all the same day over multiple back and forth appointments from my personal experience.

Also, the self help tab on the APS website shows you all the resources about APS, dos and donts and how to help have a safe and successful pregnancy.

@overthinkingornot - wow! Thank you so, so much for this information and sharing your experience! Off to read up!!

Thank you so much for all your help. I'm a nurse myself, but work in mental health so this area isn't my expertise. However i also have reoccurring PE's and already under haematology which is good so the over all treatment plan for me at current is asprin 75mg daily, however should i get a BFP i have to commence blood thinning injections like my last pregnancy. I just worry how this will affect any future pregnancies the stillborn info gives me the total fear and hate how anxious I am going to be in the next pregnancy (hopefully that is) i have been back on blood thinners for 2 months and this is the first of me trying since being on blood thinners as after a few miscarriages i just felt drained.

Congratz to those already pregnant ❤️