Pas disappearing?: Trying to be brief... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,354 members10,542 posts

Pas disappearing?

TSW28 profile image
6 Replies

Trying to be brief...

My uncle passed away with a blood clot when I was pregnant so took a blood test showed I was positive lupus anticoagulant so would do again 12 weeks later. 12 weeks later my baby passed away (term stillbirth) & a test said I was still positive. Hospital prepared to diagnose me as having APS but had a test 2 months later negative got pregnant again 4 weeks later and negative throughout that pregnancy but was taking aspirin 150mg this time throughout religiously.

Is APS transient? Does aspirin change test results? No one has picked up on the delayed diagnosis & claimed both early tests as false but what what else would explain the clots in placenta and a v late stillbirth?

Symptoms I exhibit are frequent mouth ulcers, occassional hip or knee discomfort & platelet count is just above threshold when not taking aspirin.

Written by
TSW28 profile image
TSW28
To view profiles and participate in discussions please or .
Read more about...
6 Replies
drob32 profile image
drob32

I haven't been confirmed as being diagnosed, although one test had me elevated for APA antibodies, and another was inconclusive.

However, I have mouth ulcers, and my platelets are low normal, just like yours.

MaryF profile image
MaryFAdministrator

Hi there and welcome, so sorry to hear about your loss. Where are you located? It is easier to help you if we know. Results for Hughes Syndrome/APS do come and go, if you got negative blood tests for a while it does NOT mean that you do not have Hughes Syndrome/APS. It is quite clear from your history that you need careful medical input from doctors well read on this condition. MaryF

Manofmendip profile image
Manofmendip

Hi.

I completely agree with what my colleague, Mary, has advised you.

Best wishes and regards.

Dave

TSW28 profile image
TSW28

I'm in Manchester uk. I've only seen obstetricians & APS diagnosis was retracted when I complained about no monitoring between positive tests (so now claim false positives)

Manofmendip profile image
Manofmendip in reply to TSW28

You need to be referred to an APS specialist to get properly assessed. Here is a link to the HSF Charity website page that has details of APS consultants throughout the UK:

hughes-syndrome.org/self-he...

Best wishes and let us know how you get on.

Dave

diane1428 profile image
diane1428

I am so sorry to hear your story it is very sad and I feel for you. I found that when I was first diagnosed with APS and put on asprin it only worked for a very short time and then I had to go on heparin injections followed closely by warfarin.

When on the asprin it didnt negate my APS test. I cannot say in other peoples case it wouldnt but it most DEFINITELY didnt make the slightest difference in mine.

Im near Norwich UK I agree with the other replies you have already and wish you the very best of luck Diane

You may also like...

Symptoms \"not\" associated with aps have disappeared since injecting Fragmin

and have not since injecting Fragmin. I'm also pregnant, so hormones could being playing a part....

APS antibodies, non typical symptoms

which tests for most known autoimmune antibodies. I was negative for everyone of them but tested...

Any success stories out there? Newly diagnosed.

it and my blood tests came back positive for lupus antibody. 12 weeks later, repeated tests showed...

Do all the aps symptoms disappear with proper anticoagulation mess?

GP reluctant to refer.

antibody tests. I came back positive for Lupus anticoagulant. He told me if I test positive in 12...