Hi. I am a 22-year-old woman whose endocrinologist had two blood tests done 8 weeks apart and both tests showed I have high APLs levels.
Strangely enough, I have never had a blood clot even when I was morbidly obese, had Corona and my estrogen levels were dangerously high. ( I have hormonal problems and I am on HRT.)
I am seeing a specialist tomorrow and I am so anxious. I want to get facial feminization surgery, saggy skin removal, have my floating ribs removed and get breast and butt implants. I am so worried that if I get diagnosed with APS, I will not be able to undergo those surgeries.
I have read so many studies on this disease and there are plenty of sources saying that one needs to have a history of blood clots in addition to elevated APLs levels in order to be considered to have APS. It is also mentioned that people who don't have this condition can still have high APLs levels
On the other hand, there are also some sources suggesting that high APLs levels mean a person has APS even if they have never had a single blood clot.
I'd be grateful if you could enlighten me on this matter.
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Strawberry_999
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Hi. I had extremely high levels of antibodies for lupus and aps but no history of miscarriages or strokes. Since I went gluten free all antibodies are normal. My reumatologist is scratching his head. When I had very high antibodies I was always told I had sticky blood but not APS.
There is a clinical criteria that needs to be met in order to be in studies that you do not seem to presently meet. However, it use to be more common in the past and in the UK to sometimes still treat high ApL patients with anticoagulants. Now a days that is less likely unless your doctor believes the benefits of using warfarin or even low dose aspirin outweigh the high risks those drugs carry.
If you have persistently high APLs you might discuss hydrocloroquine with the specialist. It is known to lower titers and might prevent clotting with less serious side effects.
I was going to send you the link of another post, where I thought someone had asked the same question, but then I realised that was also you.
I think it will depend on the blood test results and the answer can ultimately only be one you get from a specialist. Sometimes we disagree with specialists, get a feeling they're not being thorough enough or just plain wrong.
I have tested positive for anticardiolipin antibodies three times, but have no history of blood clots or miscarriage. Because it is positive to IgM my rheumatologists don't think the risk is as it is to IgG, so I'm not diagnosed with APS and not treated with anything for it. I do have visible signs and symptoms that do seem to tie in with APS, but also cross over into Lupus, which is what they're focusing on testing for at the moment.
My point is the subtleties of the test can impact the answers you're given. I know it's hard to be patient, but just see what the specialist says today.
Do you know about that cartoon character Pierre la Peugh? He was a skunk who draws his sword to confront any situation confrontationally as he shouts" En garde!" Think of your immune system the same way. Despite high APS factors, your Pierre may be quiet. Then the next cold, the next bad cut on your finger and Pierre may, or may not, draw his sword and look for adversaries to attack. ( Even if those perceived adversaries he attacks are actually part of you.) This is why we, in the autoimmune world,may or may not, profit from blood thinning medications.
your consultant is the person to talk this over with. They may look at other things besides no blood clots as you have high antibody levels. Any operation has serious risks if you have APS and it’s possible that an operation could trigger the full syndrome I think even if you havent had clots before. An 8 week gap between tests is unusual, it’s normally at least 12 weeks so your consultant may wish to test again. There is no definitive answer to your question, we do not know enough about APS to be certain what could or would happen.
I need those surgeries and I want them. Plus, the specialist said I don't have APS because only one type of antibody was found in my blood and the level isn't even high. Also, I have never had a blood clot and he said I can undergo all those surgeries!
I have also not had a blood clot or event but I am cerebral APS .On warfarin even though I argued the point.I need to be safe.It does bring lots of risks and a consultant at the time will decide for you.wish you well
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