First heamatology appt

[Lorraine08]

Just wondering if anyone has any knowledge or experience?

I'm a 22 y/o female I've have a DVT and an unprovoked bi-lateral PE within the past year. I also have been previously diagnosed with Raynauds Syndrome and have had a leg ulcer too.

Following my DVT my GP ran some blood tests to look into clotting risks. One test I had was lupus anticoagulant which came back as negative. Following my PE's I've been referred to a heamatologist for further investigations which is in a few months.

I was wondering if anyone has had blood test come back as negative for lupus anticoagulant however had positive results for either anti-cardiolipin or anti–β2-glycoprotein I and been diagnosed with APS?

My cousin has also been diagnosed with APS if this is relevant.

Any knowledge would be helpful I'm really nervous for the heamatology appointment.

Thank You!

[HollyHeski Administrator]

Hi Lorraine08, you've been through so much and so young.

Welcome on here, the 3 blood tests you've mentioned, are usually done twice, 12 weeks apart, they are taken as part as diagnoses along with your health history to form the diagnoses of APS/Hughes. None, one or all three can be negative/positive.

Have a read of our web ghic/world, that can give a lot of useful information.

I see you are on rivaroxaban? Thats good you are on anticoagulants, you may find they will want to try you on warfarin? They will discuss all your options with you.

Do you know if the heamatologist you are seeing is an APS specialist? We have a list on the web as well as top right hand page.

Stay with us, we all understand, help and support each other.

[MaryF Administrator]

HI, some people pass all three tests, other none for a while, I and my children remained negative for many years but then we all now regularly pass two out of the three tests. Your family history is certainly relevant and I am glad you have been referred to a consultant. Our recommended consultants in the UK are over on the right hand side of this forum under pinned posts. Try not to be nervous about your appointment, do have a look at the website ghic.world/ - plenty of information on there for your GP also. Let us know how the appointment goes. MaryF

[Molliesmom]

I am APS positive, my first lupus test was also positive, which isnt unusual the Hemo said, on futher testing it has come back negative for actual lupus, but Dr said that it is possible that in time it could actually occur.