Waiting on Lupus anticoagulant results

[Cardcraft]

I had an unexplained DVT at the back of my knee in February 2019. Had an appointment with a heamotologist in May 2019 in which they sent me for a Lupus anticoagulant test. I took the 2nd test last week and wont hear the results till a phone appointment in September.

I have very large fibroids (benign growths in the womb) and after a Google search I see that they can cause DVT's but I have also had 8 early miscarriages in the past and last year I had shortness of breath and a racing heart. Went to hospital and my d-timer was positive but didnt have anything show up on the CT scan. Those symptoms I was having could actually be due to the fact my iron level was 7.3 (I believe it should be about 12).

Anyhow, sorry for the random ramble and no real questions - think the fact I'm now actually waiting for results is heightening my anxiety.

[Lure2]

Hi and welcome to this site!

Did your Hematologist only take the Lupus Anticoagulant test for APS or also the other two tests they take for a diagnose of APS? Was the first test positive to the Lupus Anticoagulant?

[Cardcraft in reply to Lure2]

Hello there- Thank you for the reply.

I have no idea if they were testing for anything else - all I can say, is that I had 4 bottles of blood taken on that form.

They never gave results of the first test as they gave me the 2nd blood form on that first visit to hema in May.

[Lure2 in reply to Cardcraft]

Could you not phone the clinic and ask for a copy of the bloods that were taken and ask if your Lupus Anticoagulant was positive perhaps.

[Cardcraft in reply to Lure2]

Confused as to what to because Im in the UK and the NHS can move in mysterious ways lol

I'm just doing what I was told and feel I'm quite in the dark.

Are you telling me that if the 1st test was negative then I wouldn't need the 2nd test?

Thank you again for your time x

[Lure2 in reply to Cardcraft]

We need two tests with 12 weeks between the bloodtests to get a diagnose of APS.

Usually both should be positive. Usually if the first LA-test is positive the second is also positive but not always of course.

When i was diagnosed I was triplepositive with all 3 bloodtests positive 12 weeks between the bloodtests. That means;

1. Anticardiolipin antibodies (aCL)

2. Lupus Anticoagulant (LA)

3. Anti-beta2-Glycoprotein-1 (anti-B2GP1)

It is enough with one of those 3 positive twice, to get a diagnose of APS from blood-tests. If I were you I would ask for a copy of those bloods they took in February or whenever.

[MaryF Administrator in reply to Cardcraft]

Hi, on the right hand side of our forum under pinned posts, we have a list of recommended specialists, also on our charity website: ghic.world/ It is important you have the right care and testing done, these are the three tests: ghic.world/hughes-syndrome/... It is also important to check your levels of B12, D, Ferritin, Folate and your Thyroid function. I also enclose this useful paper for you: the-rheumatologist.org/arti...

MaryF

[Cardcraft in reply to MaryF]

Thank you Mary.

[Cardcraft in reply to Lure2]

Maybe I should add that Im on Apixaban due to the DVT in February.

[Lure2 in reply to Cardcraft]

Oh, Interesting! Did they start Apixaban already in February before or after your Lupus Anticoagulant bloodtest?

Was it your Hematologist who put you on oral anticoagulants? Have your symptoms been better after anticoagulation?

Well anyway you have anticoagulation now and that is good. Hope you get good news on your phoneappointment i September. Sometimes it is good to have a diagnose as then we know how to be treated. Please tell us how it goes for you!

[viv112]

Hi, try not to be anxious, anxiety just makes things worse. I had fibroids and used to lose a lot of blood each month and get tachycardia. I remember going to a and e and my heart rate was 180 beats a minute and I was struggling to breathe. Fortunately it gradually returned to normal and I was discharged that day. My gp prescribed iron tablets. But I haven’t had this since my periods finished when I was 53 thank goodness. I had positive blood tests for anticardiolipins and lupus anticoagulant, and livedo reticularis, a blotchy rash on my legs. But I have managed my APS for 10 years by taking baby aspirin daily and I now see a rheumatologist just once a year. I had a positive d dimer when I had a sore knee but I didn’t have a clot which was confirmed by another test.

I can remember feeling frightened and anxious when I was first diagnosed and being stressed makes you feel much worse. Try to relax. Hope you find a good considerate rheumatologist who will calm your fears.

[Lure2 in reply to viv112]

I am sorry but I just have to ask you if your Rheumatologist is knowledable of APS and works with autoimmun illnesses every day? You are only on Baby-Aspirin with your APS, diagnosed also with Lupus Anticoagulant.

I can tell you that our clots may bee micro-clots and they are sometimes very difficult to see on a Scan of today. I talk of own experience. As you are Lupus Anticoagulant I think that you should see a Specialist to have an investigtion if you need anticoagulation instead of only Baby-Aspririn. I also started with Baby-Aspirin here in Sweden (triplepositive) but had to finally agree to take Warfarin and that has been my lifesaver.

I do not want to make you anxious but we must fight for our health with this illness!