New and concerned

My blood was recently tested positive for cardiolipin antibodies. My antibody level was 33 and considered weak but positive.  I am scheduled for more blood tests in about 3 months but very concerned.  I have not had any blood clotting or miscarriage issues in the past. Should I expect to be placed on anticoagulants if my amount remains around 30?  I'm concerned for the future. 

10 Replies

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  • Hi Ilca 123,

    Welcome to this friendly APS-site where we try to help eachother as much as possible.

    To start with I wonder where you live and why they did take the bloodtest for APS if you have no symptoms what so ever.

    Best wishes from Kerstin in Stockholm

  • Thank you so much for the response.

    I live in the US and was receiving a blood test for an unrelated issue.  The doctor did not seem overly concerned when he told me. I assume because I have no history. He set me up with a rheumatologist to visit and follow up with. After researching I am concerned. 

  • Hello and welcome.

    As Kerstin has already asked you, where are you from and why were you tested for APS?  The answers to these questions will help us and others on here to help you.

    Best wishes.

    Dave

  • For me, I tested positive for anticardiolipin Ab as well. But I had recurrent miscarriage which is why I was tested. They told me I'd only need to be on anticoagulants when pregnant. I then saw a haematologist, went through some lifestyle and medical questions with him and he confirmed that it only appears to affect me in pregnancy, this seems to be the trigger for it. So maybe it is similar for you and if you were to become pregnant, at least they have this vital information and can treat you so that you don't miscarry. Try not to worry, it affects people in different ways and for me I have no symptoms outside of pregnancy. It is good that they included it in a routine blood test, that normally doesn't happen.

  • Thank you so much for the responses. Do you think a level in the 30s is dangerous? What were some of the first levels others experience?

  • HI, I notice you have just joined, if you have any symptoms, then do get in contact with your medical consultant or GP.  At the next appointment they will decide how to proceed with your case, which will not only be based on your test results, but also history including your lack of clotting to date!  Please do direct any detailed medical questions at them and in the mean time prepare a list of questions and your medical history in bullet points.    MaryF

  • Agree with Mary here-you are getting overly worried about a 'number', without discussing the significance  (or not) with a GP to explain it all to you. 

  • Hi,

    Sorry you have so much worry at the moment. From what I have learnt some people have high levels and no symptoms and then there are other people who do not have any positive test but have severe symptoms with major clotting events - so the level does not necessarily correlate to the severity of the condition or whether you will develop the full syndrome.

    It is good news you have no other symptoms or clotting events and hopefully it will remain like this for you.

    Kelly x

  • I have been under #10 for 5 years/ when first tested my "cardiolipins" were 25...low positive....prescribed 3 /80mg aspirin and a few months later Plaquenil(generic) 200mg 2/day...my cardiolipin level was "normal" but I began to feel "unwell"..flu like symptoms...since 2010  I have been in terrific health and feeling well...no medication changes...get tested every 3 months

    considering my age (now 67) I am grateful a Rheumatologist diagnosed me before I suffered clotting,TIA or strokes.

    where are you in the US....APSA has links to local MD's n every state

  • here is the link to APS "literate" doctors it the US

    apsfa.org/apsfadrlist.htm

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