Cardiolipin antibodies

[BenBiscuit]

Hi guys, I’m very new to this but wondering if anyone could help me out with info on Cardiolipin antibodies levels, I have just had a result of 45 and awaiting a doctors appointment. Having been ill for years with systemic symptoms, blocked blood vessels, small bowel resection,, Addisons disease with no cause found as to why , along with a host of other symptoms incl severe permanent headache, transient loss of sight, speech, calf pain . Severe fluid inbalance, so puffy on upper body and face particularly when I wake ofa morning. Numerous hospital admissions but no diagnosis . Can any one please advise if this is partially high. Thank you so much for reading this.

[MaryF Administrator]

Hi, please do arrange a follow up appointment with GP and ask to be referred to a specific Hughes Syndrome/APS Specialist. It is not unusual to have other autoimmune conditions such as Thyroid and Sjogrens, a lot of us have many of the conditions which can overlap. Be aware that Thyroid testing is particularly unreliable so some of us order private tests to look at our Thyroid beyond just the standard not very good TSH test. Before my thyroid was treated I was very puffy and water retentive. MaryF

[BenBiscuit in reply to MaryF]

Hi thank you soo much for taking the time to reply. Does a Cardiolipin level of 45 mean I could have APS? And us 45 high.. I will definitely get thyroid retested..

[MaryF Administrator in reply to BenBiscuit]

Usually three tests are done, the repeated twelve weeks later, but over 40 is positive. MaryF

[Charts]

Does it give any indication of numbers online maybe?

[BenBiscuit in reply to Charts]

It gives you different ranges of Cardiolipin levels 0 to 16. So I can see it’s higher than normal but can’t see if the significance of 45 is exceptionally high. Still waiting for an appointment and struggling with so many symptoms. I would appreciate any guidance .

[Charts in reply to BenBiscuit]

Just wondering what symptoms you're struggling with? My cardiolipin was ok it was the beta 2 glycoprotein with me

[BenBiscuit in reply to Charts]

Hi , I have a range of symptoms that fluctuate headache 24/7 that is worse of a morning , severe muscle spasms, facial pain, Seizures, tremors , paralysis, abnormal sweating , fluid retention , my upper body swells when I lay down, pain and palpitations in my upper abdomen/epigastric area ..Along with brief episodes that come from nowhere : feeling dizzy and not being able to see properly or focus and not been able to speak or find the words to speak properly (sometime the words are muddled ) and my headache gets so much worse . The only medication that help a little bit is morphine. I also keep having serious emergencies with no cause found eg a small bowel blockage, Addisons disease. I have seen numerous doctors , who all agree I am seriously ill but they can’t work out why . They thought it was metabolic and I have even had a muscle biopsy and gene testing . It’s as though different parts if my body stop working or are effected by something then then start working again. I appreciate you asking. Any info would be really appreciated.

[Charts in reply to BenBiscuit]

I totally understand how it feels to have so many symptoms and no answers. I also have some weird symptoms going on e.g seizures, whole body spasms, left side of face spasms, twitching random places, shooting pain going up both feet, shooting pain in fingers, numbness in arms, involuntary movements, cannot focus my eyes anymore (big problem for me this one) fatigue (which can trigger seizures etc) dizziness (especially when upright). I got tested for lupus which was negative, but tested positive for beta 2 glycoprotein. Then had to try and explain to my doctor that she's needs to refer me to a rheumatologist. I also have pots syndrome which I found out co exist with APS. I seen a neurologist about seizures, involuntary movements and was told they believe it functional neurological disorder as they don't recognize aps and movement disorder, he said only strokes are the neurological side of aps. So will be going to get an opinion from an aps specialist at the lupus centre. Just had my 3rd operation on my ear and my neurological symptoms were happening more often. Started taking warfarin and so far no seizures, involuntary movements/spasms. Don't know if it's a coincidence that everything has calmed down post op, only time will tell as I never usually can make it past 3 months without nothing happening. You might be on to something here with a positive cardiolipin test.... hopefully you will finally get some answers!

[olleberj]

moderate or high levels (greater than 40 GPL and/or greater than 40 MPL units) is a laboratory criterion for the diagnosis of antiphospholipid syndrome (APS)

ARUP Laboratories

Cardiolipin Antibodies, IgG and IgM - ARUP Lab Test Directory

[BenBiscuit in reply to olleberj]

Thank you so much for taking the time to reply. I have now managed to make a rheumatology appointment and hope they will re test.

[olleberj]

I wish you all the best. Many years ago, before my APS was controlled with blood thinner, I had a similar experience. All sorts of weird symptoms without an obvious cause. It turned out the tiny blood clots all over the place were causing my symptoms.

I hope that you are able to get a decent diagnosis and treatment plan soon.