I need a bit of help understand my diagnosis

Hi everyone, anyone!

I have been unwell for quite some time, hair loss, seizures, rashes, headaches, weight gain, miscarriages, mouth ulcers, insomnia, severe inflammation of the bladder and I'm sure some more things I could add.

Only last week I was sent a letter saying my bloods had tested positive for "Lupus Anticoagulant, Sticky Blood Syndrome and Anticardiolipin Antibodies".

I was wondering is this three different things? And what is the cardio one referring to I'm so confused with it all. They are saying I have to wait 12 weeks to retest bloods so not on any medication for this yet.

Thank you if anyone can help!

Alyson

8 Replies

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  • Hi Alyson,

    In reply to your query

    Only last week I was sent a letter saying my bloods had tested positive for "Lupus Anticoagulant, Sticky Blood Syndrome and Anticardiolipin Antibodies". I was wondering is this three different things?

    These are blood tests that give a indication if you carry an antibody (something that your body produces normally to fight infection) which will make it more likely that you can have blood that clots easily (sticky blood in other words). There are three different antibodies that are checked to give a definite answer. However, these antibodies can be positive if you have had ,say even an infection, as they aren't altogether specific (especially the anti-cardiolipin antibodies). These were given several names based on what was used to initially conduct the test in the laboratory. The reason that you are asked to return for a test 12 weeks later is that in cases of infection causing these antibodies to be formed, these will then disappear. That way it helps the doctor decide if these were falsely positive in your case or if there is a need to do anything for you.

    A link for you to read below

    hopkinslupus.org/lupus-test...

    It is called anti-cardiolipin because when the laboratory test was first developed the antibodies were found to attach to the a fatty molecule found in the cells that were cultured from cow heart, which we now know is present in almost all cells of the body.

    M

  • Hi,

    My goodness thank you so much for your reply! So much information I actually feel like I understand a bit more my doctor just rushed me off the phone I guess they just don't have time anymore and it's the obstetricians that are following me up with this primarily after the 3rd miscarriage. Thank you so much for taking the time I really appreciate it a lot. Going to have a good look through that link now I've been a bit nervous to google things as I always find the worst things!

    Thanks again,

    Alyson

  • Alyson you might also want to ask about this on the Sticky Blood/ APS/ Hughes HealthUnlocked community.

    healthunlocked.com/hughes-s...

    Take care,

    Twitchy

  • The obstetricians don't always deal with this alone. They will/should refer you to rheumatology or have a joint clinic with rheumatologists if you are planning further pregnancies.

  • You may also find APS Support UK helpful for information and support - aps-support.org.uk/

  • Thank you everyone really helpful :) my family have been asking me so many questions about it but I haven't had a clue so I had some great information to fend them off for a while longer after reading this!

    So glad I came on this,

    The seizures have been the worst part for me had some pretty bad injuries and I have a 4 year old so really frightened about what could happen.

    Alyson xx

  • So sorry to read about the miscarriages and do hope you're on meds very soon. I can imagine how worried you must be..all I can send is a hug xxx

  • Thank you! I just feel sort of silly because I have joined a Lupus forum, without know if I even have it! When I looked the disease up I have all the symptoms, seizures, rash, kidney problems, hair loss, headaches, terrible fatigue, mouth ulcers, heart paltitations etc etc etc. In a way I was glad to see the blood test positive because I didn't feel like I was losing my mind, but now I am worried it was just the anticardiolipin part I was positive for. The letter doesn't differentiate it just says the three things. I will get tested again on 3rd of July. Thank you everyone for the support :) xx

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