Aps tests equivocal: Hey has anyone... - Hughes Syndrome -...

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Aps tests equivocal

Vj1990
Vj1990

Hey has anyone else had the APS tests come back equivocal ?

I’ve had 3 tests so far one of them showed positive for lupus anticoagulant and the rest equivocal with my anti beta and also the anticardiolipin being at 23 (nornal is 20)

I’ve had 3 miscarriages and I also have a portal vein thrombosis (I also have liver disease but this has been ruled out as the cause of the portal vein thrombsis.

If this happened did you end up being positive? In kind of hoping it is because then I’ll be less scared next time I get pregnant being on treetment .

Thanks x

6 Replies
oldestnewest

Hello

If you’ve had three miscarriages and are positive then you do have APS. The lupus anticoagulant in particular doesn’t go by numbers / titres it’s just either positive or negative. Since you’ve been positive each time and have a clotting / pregnancy issue history then you do have APS.

I hope you find a good knowledgeable Dr to help you. I’m sorry you’ve suffered miscarriages, I know how awful that is. There are several lists of good Drs that can be found on the internet ( ghic and aps Support U.K. websites). They list Drs who will be able to help you x

Vj1990
Vj1990
in reply to Yllek

Hey thank you I thought this too so I’m not sure why my haemotologist is not sure 🙈. She’s repeating the test in 2 weeks again to see what’s what , and she said she can do a few other tests to find out why I have a blood clot so I have no idea what they are. My white blood cells were a little low for a few months and I think she thinks a virus caused that, so I guess she is thinking a virus might be causing my antiobodies to flare so confusing. I think my white cells were low because my blood thinners we’re causing my period to be horrendous and I was so anemic, because as soon as I started iron tablets they normalised. Xx

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Vj1990
Vj1990
in reply to Hidden

Hey so it was just low white cells and also low haemoglobin but my platelets are fine . I just found out recently too that my gran also had a blood clot at ages 26 but obviously that was way back in the day when they never knew about aps. The first test I had that shows raised levels was in February and the last one as July so I feel like 5 whole months of having them raised is a bit fishy. I’m back to see the haemotologist in 4 weeks so I’m hoping she will sort it . I’m on Fragmin just now anyway and I think she plans to keep me on it as we are trying for a baby again, although for some reason it’s taking so long to get pregnant now, but when I do I’ve to add in aspirin xxx

MaryF
MaryFAdministrator
in reply to Vj1990

Hi, it is important to have a specialist who fully understands the condition, our list is out here under Pinned Posts, on the forum and we also carry a list on the charity website: ghic.world/ I spent years, despite a history of serious DVT not passing either the tests for Hughes Syndrome/APS or Lupus, I do pass most of them now, regularly. MaryF

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