Hello Sunflower, and we are so please to have you on the forum! I hope it will be the start of a journey for you of discovering all things APS and success along the way to healthy pregnancy, healthy baby/ babies, and beyond if it should be the case for you.
Firstly, your story is not at all uncommon, as you may already know.
I’m going to start by enclosing this ,”starter website” for you.
This will explain the tests for APS, along with many other basics of APS.
Yes, the tests are drawn twelve weeks apart, given the first rounds are positive. ( only one of the three tests needs to be positive for APS.). The purpose of testing again is to rule out a false positive, which is rarely the case.
APS in pregnancy is usually quite successfully managed ( under very specialized APS care team ) with Low Molecular Weight Heparin sub cutaneous injections - self administered- twice daily in your abdomen. You will quickly get the hang of it! It’s unusual to have a little anti platelet like aspirin or clopidogrel added to the mix.
Often baby will be delivered at 37 weeks.
I’m not sure where in England you are located. There are a few specialty centers in England.
Liverpool is very good- Professor Vanessa Martlew is an excellent Hematologist there. I do know she consults with an excellent high risk obgyn who is familiar with APS.
London of course, you are well covered- and my colleagues or other members here can direct you to APS specialists. Just make sure that your current team, in fact, are APS specialists. That’s the main thing, and I’m certain they will direct you to the correct facilities.
Many here have been in just your shoes. It is not always easy. I believe the success rate now with heparin is ~90%.
Best wishes. I know you have been through very difficult times with this- not knowing why. I hope now you will at least get the answers you need, and the help you must have.
There is ,” obstetric APS”, but oftentimes women find they do have a propensity for APS even when the pregnancy resolves.
I should add, that all women ( non APS patients) will have slightly thicker blood when pregnant. So when a woman with APS antibodies becomes pregnant, it is a ,” double whammy “ with regards to the thickness of the blood.
There is a list of APS Specialist on this forum, under a section called Pinned posts.
It could be that with your son you were simply not experiencing a lot of antibody activity during that time.
This is a bit of a ,”controversial” theory perhaps. I think it might depend on the specialist you ask. It all hinges on the concept of fluctuating antibody levels, how high is ,”high”, sero negative ( they are undetectable briefly then become detectable again a few weeks later.... this is not terrible uncommon. How would this affect a pregnancy? I don’t know. I’ve felt great , and been drawn and been sero positive. I’ve felt horrible, had a DVT , and been sero negative! My antibodies are not particularly high- low to moderate, yet I have a very severe case. It just doesn’t always follow the rules in the book- but for the most part the rule books are a very good gauge. I hope I did not just confuse you.
I’m 50 years old. I was only diagnosed in 2016, but had lots of complications before.
I have two children, ages 18 and almost 28 ( our daughter will be 28 in November.) we lost several pregnancies in between.
Let’s talk about my mother, shall we? She was born in 1930. We now know she also had APS. ( undiagnosed.)
She had my brother without problems.
Three years later she conceived identical twins. They were born almost 4 months premature- my mother had severe and life threatening pre eclampsia. She went into horrific convulsions, and was not expected to live. My twin sisters were not expected to live- miraculously they did.
My mother was visiting relatives in the country side in North East Texas- in a tiny farming / ranching community a few hours away from Ft Worth /Dallas, where she and my father had ,” city jobs.” There was no real Hospital at all, just a small clinic. The local veterinarian was called, and he disenfected two chicken incubators and my sisters were kept warm and sterile while my mother was stabilized and an ambulance could be arranged for her and my sisters to be transported to Dallas for proper care.
Flash forward to my sisters high school years... surprise! Mom is pregnant again! With me! She did ok... until I was about three weeks old. She got a leg clot.
When I was about 7 years old- she got another one and it embolized to her lung.
This happened a few more times over the years until her early death- from clotting complications.
Hopefully it will help you out in your quest for baby number 2🙌👍
You might want to see if you have any auto immune or thyroid issues too.
My pregnancy probs were initially connected to my Hashimotos .
After my successful first time IVF , subsequent treatments all failed. The last treatment threw up the APS issue. Sadly though that one didn’t take either and despite all the blood thinner injections etc. we never got our number two.
But that was a few years ago now. Hopefully with these experts on the case it will be routine and work out well for you. 👍👍
HI, you have already had some detailed answers with the charity website added in, this is also a good paper to read: the-rheumatologist.org/arti... Usually the three tests done are here: ghic.world/hughes-syndrome/... usually two sets done 12 weeks apart. You will learn a lot on here, from other members by reading their posts and the various replies, many on here will have a similar history to you. Welcome by the way. MaryF
Hiya, I’m sorry for your losses. My story is very similar to yours - I have a healthy 4 year old boy - my pregnancy with him was smooth - no issues at all. I then went on to have 2 miscarriages in 2017 when we started ttc again, I was diagnosed with obstetric APS after the second miscarriage. When I fell pregnant again in late 2018 I took low dose aspirin and heparin which I injected into my stomach once a day. Unfortunately I lost the baby at 8 weeks - tests later revealed the baby had Turner syndrome- the baby was growing ok so it looked like the heparin treatment for the APS was working - just unfortunate this pregnancy had a chromosome issue. I’ve had other tests done - thyroid, iron, vitamin levels - I’ve done these myself on medichecks (after recommendations from the lovely community here) - I’m 39 with a low AMH level so I also check my hormone levels regularly via medichecks tests - FSH, Oestradiol, LH, prolactin, progesterone etc. I also had my natural killer cells tested privately at the lister clinic which came up high. I’m doing regular fertility acupuncture and take a tailored herb prescription via Naava Carmen at the Fertility Support Company - I’ve spent the last few months doing this - along with a healthy diet and minimal alcohol - in an effort to improve the quality of my eggs. All my hormone levels are now in a much better place so we’ve been given the go ahead to now start trying again. I’m under professor Lesley Regan at St Mary’s in London - who will look after me when (fingers crossed) I fall pregnant again - I was lucky enough to get this on the NHS (although it took months after the referral to get the appointment) she’s written a book called “miscarriage- what every woman needs to know” - I’d recommend reading it along with “is you baby body friendly” by Dr Alan Beer - if you haven't already - it helps explain a lot.
Once I fall pregnant I’ll be on heparin again, progesterone and will be tested to check my antibodies to determine what dose of aspirin & heparin they’ll put me on. I’ll also have scans every 2 weeks at st Mary’s - I believe once you’re in any recurrent miscarriage clinic and you fall pregnant again they should scan you every 2 weeks throughout the first trimester for reassurance. I’ll also have treatment for my high NK cells - although this will be privately again as they don’t do this on the NHS. Please shout if you have any questions or want to talk - it’s a hell of a journey and it’s helped me massively to just talk about it. Having all the tests done helps too as it gives you the best picture of what your up against and what you can do to give you the best possible chance next time. X
It seems to be something no one knows about really ie family and friends, which makes it difficult to talk with them about it...
I know i havent yet been diagnosed with aps yet, though its sounding likely but it throws loads of questions up in my head and it is a slight relief if it is the case ...it gives a reason to my miscarriages and there is some hope for next time
Plus i could have been walking around without knowing i had this if it wasnt for the miscarriages and at higher risk of clots/dvts etc ....so there is a glimmer of good news come out of this horrendous time
I am going to look up an aps specialist...thankyou to all who reccomended this , i never even knew they existed
And i believe i have been tested for thyroid issues and diabetes but think it is tsh and hba1c they have tested to look at for this?
Are there more tests to look at thyroid?
My hubby has underactive thyroidism and he has thought for a long time that i could be the same ....apparantly i feel tired a lot of the time etc
Its really good to talk allmy thoughts out on here
I am sure there will be more questions i think of especially if its confirmed that i am diagnosed with it .....just warning you all
The thought of helping a fellow ,” traveler “ in this world with information ( albeit in a small way) to be able to have a better life, to perhaps bring new life into the world, and just have a place to gather information and find new friends along the way here with us is very gratifying for us.
It’s really a very lovely experience for everyone- a gift- of actual life! Thank you for letting us help you.
I suggest if you have questions about thyroid, consider joining Health unlocked Thyroid UK.
Many members here are also members there.
I suspect you will get brilliant answers here as many of our members do have the low thyroid that is so commonly runs in tandem with APS, but your queries will be very targeted and concentrated at Thyroid UK.
I know for example, it is recommended that in England you self pay for a better, more comprehensive thyroid test than the NHS test. I believe MaryF says it is Blue Horizons or MediChecks. On certain days of the week the company runs a discounted price.
As I live in Texas, I’m not familiar with it. Check with MaryF or , I’m sure thyroid UK will know.
Also, on our forum, under pinned posts, have a look for an article we have pinned called minerals and vitamins. You should familiarize yourself with that. The link to blue horizons might be in the comments.
Look at it as good news rather than bad, as it's better to know than not.
Use the next 2 weeks, to have your list of questions ready - best in bullet points, your history, any family autoimmune issues, your future plans and questions. Take hubby or a good friend with you for support, extra ears to listen.
I am pleased its soon so thats certainly good news but i cant help but assume by the appointment being so soon must mean somethings thrown up on my bloods?
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thankyou i will keenp you updated when i do get my results
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