positive then negative now waiting for testing

I managed to get hold of some old blood tests, 2014 lupus anticoagulant not detected, 2015 both the cardiolipin antibodies were negative too.

But back in 2001 the lupus one was positive, and then I saw the immunologist who again found something positive, and wish I could get my hands on those, but I have moved interstate since then and cant even remember who the Dr was.

So the fact that the 2014 and 2015 ones were negative, my Drs are suggesting its nothing for me to worry about, is it possible to just go away even though it was positive for a while?

I have pathology forms here to get retested and will do that in the next few weeks. so I guess that will give me an answer

9 Replies

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  • Hi

    I dont know much about this Im afraid. But, as I understand it, you need two positive tests 12 weeks apart I think to get a diagnosis of APS. If you only had a positive test once, and had two negative tests one year apart, then maybe your doctor is right and there is nothing to worry about? I know there is sero-negative APS (abeit a disputed concept) but I think then you would need to ahve teh clinical symptoms, like clots.

    But others will be able to give you a much clearer and more reliable picture.

    best wishes

  • Hi, read your previous notes - did you get to see a specialist,

    Rather than look at your blood tests, what are your actual symptoms at the mo that are concerning you?

  • Dizzy woozy feelings in my head, ground moving, heart rate increases when walking upstairs to pounding and episodes of almost passing out with light changes, just some symptoms, but the ones that lead me back here. Waiting on bblood results to see if I need to take this further

  • Are you on any anticoagulants? Am I right in saying this has gone on for a few years? Have you got a specialist now?

  • No anticoagulant at the moment, the positive tests I had were 2001, symptoms have been going on for 7 years, diagnosed with hashimotos, but treatment is not reducing these symptoms which are increasing, which is why I am looking for answers

  • My colleagues can tell you more about hashimotos! What medication are you on for this?

    Worth trying junior/75mg aspirin while you are waiting again just to see if your symptoms improve?

  • I am on slow release T3 and low dose naltrexone, didn't respond to the usual medication

  • Your symptoms could also be from the fact that your Thyroid may not be at the right levels. You are explaining palpitations which can give you that feeling in the head. When did you last get your Thyroid checked? I'd start there if I were you. You should also know that Hadhimotos quite often runs with Hughes and also Sjogrens Syndrome. It is another reason why your Dr should take those positive tests seriously.

    Also get your Vit D, B12 and ferritin checked because if your iron is low you won't uptake the Thyroid meds.

  • Thyroid after many years is finally good, took lots of fighting and many Drs to finally find a good one who thinks outside the box and checks everything. Thank you for your thoughts though

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