Positive IgG anticardiolipin antibodies

[bathouse]

Hello

After 5 years of symptoms (initially thought to be MS) I have finally had two positive IgG anticardiolipin antibodies (22 and 26 units-normal is less than 12.1)

Ive been told that the levels have to be over 40 to get a diagnosis of Hughes, is this correct?

Thanks in advance

[Lure2]

I do not know how to answer as I live in Sweden with other numbers (units or titres) but as far as I can understand you are over "normal" units (if normal is less than 12.1 as you say).

You have symptoms also and that in itself could be enough for a diagnose also if you have got relatives with similar symptoms.

APS is rather often misdiagnosed as MS, usually by a Neurologist who is not knowledable of APS.

What is important now is that you get in contact with a Specialist of autoimmun illnesses who is used to take patients like yourself with a positive bloodtest for APS (an APS-Specialist). Very few Doctors know APS well. This Specialist is exstremely important for us!

Good Luck!

[bathouse in reply to Lure2]

Thank you for replying it is appreciated.

I hope I will eventually get some answers, I have felt like I have been going round in circles for years.

[Lure2 in reply to bathouse]

I understand that better than you can imagine. We are so many here who have gone through a similar experience before landing at a Specialist-practise.

[PepperT]

I was finally diagnosed with levels well below 40, mine too was in the low 20's although i was showing many symptoms of APS

[bathouse in reply to PepperT]

Thanks, that’s reassuring to know, I have said for years that I thought I had Hughes, hopefully I will get some answers now.

Thank you for taking the time to reply

[bathouse]

Thank you, your advice has been very helpful.

[MaryF Administrator]

Hi, results can come and go, and have lower results for a period of time is not that uncommon, I always attend every new appointment with my medical history and symptoms written out in bullet points, and also if I need to I email any new doctor our charity website: ghic.world/ also many on here find this paper very useful to hand on to medical staff: the-rheumatologist.org/arti... Also if you get any visible symptoms like for instance Livedo Reticularis then always take a photograph in case that is needed at any appointment. MaryF

[bathouse]

Thank you Mary, I appreciate your help.

[bhaskar2boda]

Cardiolipin antibodies varies.and u have symptoms so better to take warfarin treatment for rest of life..With INR 2-3 target....Live happy

[bathouse]

Thank you

[GinaD]

I would add, based on my own experience that consulting with functional medicine doctor or dietitian and a trial structured elimination /detox diet may point to a hidden food allergy or gut biome imbalance. There is a theory, once universally regarded as wacko, which is now gaining speed every year- that most chronic diseases including autoimmunity have their functional root cause in the gut. I have repeated this often because I am still amazed that I could casually eat a food for years without realizing it was actually a personal poison. I found by such a diet that I am highly allergic to cashews. As well as gluten. When those were eliminated from my diet my IgG which happened to dwell in the very high range, dropped to what one hematologist called boring. One can research, and then try such a diet on one's own, but results are faster and more inclusive when done with a trained professional,