I have tested positive for beta2glycoprotein IGM 3 times in the past 4 months. My value was 21 each time and the cutoff for positive is 20. The interpretive info says 20 is the 99th percentile and my result is suggestive of APS. I have also read that the value needs to be over 40 to be diagnostic. The tests were part of a recurrent pregnancy loss panel. My original doctor was dismissive of the initial results and said they were too low to take seriously, but said he would let me take blood thinners if I want to. Not a decision I feel I should make on my own.
I am now seeing a new doctor and have not been able to discuss the latest results with her. Any clarity would be helpful. Thank you.
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wannamuffin
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The high titers that some lab reports state are necessary for a diagnosis are part of the Sapporo and revised Sapporo criteria. These criteria were intended for research not for clinical diagnosis and many, many people have significant manifestations of the disease with low titers (and some of course are seronegative). Unfortunately, most practicing physicians do not know the criteria were intended for research, not for diagnosis. So, you have to be sure you have a doctor who knows a lot about APS. Some APS patients who have not had a thrombotic event do take blood thinners if there are symptoms (e.g. severe headache, memory loss, etc) that improve or resolve on a trial of the blood thinner. This is an individual decision; there are no defined criteria or good data to guide you.
I could have written your post! Like you I have low titer IgM as my only positive blood test, which came up following several (early) miscarriages. I had lots of other suggestive symptoms (suspected TIA, migraine, memory loss) too. Because of these low levels I was initially diagnosed as seronegative but started Clexane as a 3 week trial. The results were nothing short of miraculous so I remained on it. And our daughter was born full term 11 months later When I saw Prof Khamashta at London Bridge, however, he was angry that I had been diagnosed seronegative - "a positive is a positive is a positive if we're talking about diagnosis" & he confirmed that the Sapporo criteria are for research purposes only. Where are you based? Can you get to London Bridge/St Thomas'? Or one of the other centres where there are APS specialists? I was certainly amazed by the results of my Clexane trial but understand that you may need a formal diagnosis for insurance purposes if you are in the USA etc. Let us know how you get on! X
Yesterday my rheumatologist called me and told me I was "negative" for cardiolipin IGG. I asked her how many titers. She told me "6." Over 14 years, I've been 8 twice and 6 once, so as far as I can see I always have titers that are a low positive in London. But instead of letting me have a heperin trial, I'm being sent for neuro/pscyh testing in case I have Alzheimers plus seizures, plus being diagnosed with MS, and then undiagnosed with MS. I have already responded well to heperin when I was put in the hospital after having a seizure, and aspirin has helped, but not as well. I'm just so frustrated. I'm going to the best hospitals in the US. They are centers in treating this illness, but they are completely ignoring Dr. Hughes. I send them his articles. I complain a lot, and hoping maybe I can open up some minds, even if I annoy some of my doctors.
You have got two very good answers from Salty and eltrl.
There are books about APS to buy on Hughes Syndrome Foundation charity website. I prefer "Sticky Blood Explained" by Kay Thackray. She has got APS herself and writes about different symtoms. As very few doctors know about this illness it is important to have an APS-specialist!
Best wishes and good luck from Kerstin in Stockholm
Thanks so much for your feedback- it is very helpful! I am in the USA, and am currently dealing with my OB since we are planning to try to conceive again. My choice whether or not to use blood thinners would be mainly focused on pregnancy for now. I found a recommended hematologist on a US based APS board that is at the same clinic location as my OB. I will make an appointment with her. Thank you!
My doctor diagnosed me with APS. Since I have never had a clotting issue they are focusing on treating it during pregnancy. The question is whether to do aspirin alone or aspirin and Lovonox. I am leaning to towards doing the Lovonox since I want to have the best chance of having a successful pregnancy.
I am seeing a hematologist who is experienced with APS in a few weeks to discuss it more broadly. Thank you for being a great resource!
Eltrl- Really glad to hear you had a healthy pregnancy- it is very encouraging!
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When I saw Prof Khamashta at London Bridge, however, he was angry that I had been diagnosed seronegative - "a positive is a positive is a positive if we're talking about diagnosis" & he confirmed that the Sapporo criteria are for research purposes only. Where are you based? Can you get to London Bridge/St Thomas'? Or one of the other centres where there are APS specialists? I was certainly amazed by the results of my Clexane trial but understand that you may need a formal diagnosis for insurance purposes if you are in the USA etc. Let us know how you get on! X
Confused about acl results...
Question about diagnostic criteria.
APS only causes late miscarriages?
New & confused! ACL+ results, now what?
