Sticky Blood-Hughes Syndrome Support
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Was tested positive for antiphospholipid antibodies in my Blood

Hi so I was supposed to get sinus surgery and during the pre op they found that I had antiphospholipid antibodies. I am 38 years old and have never had any symptoms that I know of. I go back for my second test in 12 weeks but I was wondering if any one got this after having abortions or having an IUD paraguard but in and if anyone thinks there is a link. I do not know much about APS but I am freaked out to say the least so just trying to find out some information.

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What was their reasoning to test you. You say you have no symptoms but the don’t routinely test for this.

We need a bit more information,Cindy

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I was supposed to have surgery and my PTT test came back abnormal so I had to go for many Blood tests with a hematologist. I haven't had the second set of tests for the 12 week later test but im still nervous

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Hi and welcome, I see you have just joined.

As Cindy says, its not routine for APS to be checked, tell us a bit more about yourself, where you are, why they tested etc.

You can have raised inflammatory markers in your blood, which would indicate an infection without having APS, which is why the test is repeated in 12 weeks. Let's hope this is your case.

Did you have your surgery?

I appreciate your worried, stay with us, we can help with support and share our own experiences. Its better to have a diagnoses than to go through life without knowing. Our sticky thick blood can be treated and controlled.

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Hi and welcome to this very friendly and helpsome site for HS/APS.

I understand you are chocked but as HollyHesky says it is good to have a diagnose at an early stage as this illness is treatable and it is good if it is picked up early to get the correct treatment.

Some people have it for years with a lot of symptoms but no bloodtests to figure out what it is they have or very often with a Doctor who does not know autoimmun illnesses like APS. It is a rare illness but need proper care.

Hope you will stay with us now as I know you will get good help from our members and also the Admins. I am from Sweden and I have been here several years to get help and now helping others also.

Best wishes from Kerstin in Stockholm

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I understand you are "freaked out" but take a deep breath and try and relax. APS/Hughes Syndrome cannot be caused by abortions or having IUDs! It's like saying I caught a cold because I left my jacket at home! A cold is from a virus!

The antiphospholipid antibody is an autoimmune condition,sometimes called "sticky blood" and IF you have a diagnosis, the good news is that you have no symptoms; and the second, is that this is TREATABLE.

What is it? It means that the blood is "sticky" which means that oxygen, carried by the blood, doesn't always reach areas of the body. The treatment is to THIN the blood. In mild cases, this may be taking one baby aspirin every day.

My advice to you is to wait until all the tests are repeated and then discuss this with an expert. If you are in the UK, you can find a list of specialists under Topics, on the right hand side.

To repeat: First, you don't have a diagnosis. Second, you are symptom free. Third, this is a very treatable condition.

Have a good week-end and enjoy it.

With good wishes,

Ros

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As Ros says; you do not even have got a diagnose yet. And if you get a diagnose it is good that you have no symptoms and if you get symptoms you have got a diagnose very early and that is very good as then you can be treated early to avoid problems from APS.

I did not realize that you had not done the second bloodtest to get a diagnose.

Kerstin in Stockholm

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Ok well I suppose I will come back once I get diagnosed and if I don't get diagnosed then I wont come back. I was only trying to get some information that's all.

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Leamercedes22, No problem it’s understandable and you are welcome here for information anytime.

The more people who know about this disease the better, even if not for yourself,if things come back negative, you may learn information that can help someone else.

Good luck I hope your secondary tests come back negative, please come back and let us know even if it is just a simple post of “my follow up testing was negative”, Cindy

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That's how I found my APS from a pre -op blood test for sinus surgery, am I glad they did that pre-op blood test in 2010. If you are confirmed with APS, my best advice for you is to have your vitamin levels and iron levels checked. Research shows low-levels of vitamin D3, vitamin C, folic acid and iron in APS . My levels were low also. There is new information on APS is coming out regularly.

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Hi LONETREETRUNNER,

Also WELCOME to our friendly site where we all have APS.

Did you test positive for all the three antibodies and did they test them again after 12 weeks time before you got the diagnose?

I wonder if you are on any form of anticoagulation; some get a baby-Aspirin to take every day.

Best wishes from Kerstin in Stockholm

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Yes, I was tested 12 weeks after the first test. I tested positive for anti-cardiolipin, anti-b2 glycoprotein 1, lupus anticoagulant, anti-double-stranded DNA. Anti-body tiers were high. Tried baby aspirin then Plavix, it caused gastrointestinal issues, bleeding etc. My doctor prescribed Xarelto.

Because my blood pressure is uncontrollable, Xarelto didn't work for me. Lovenox worked great when I was on ACE inhibitors for my blood pressure. But I developed angio-edema. Xarelto probably will work great if I could control my blood pressure.

I have also polycythemia with raynauds syndrome and APS which limited the type of blood pressure medicine I can use.

I am taking Cordiart from Bio Actor (Netherlands). A pharmaceutical grade bioflavonoid from oranges. It improves blood-flow by blocking E-selectin cell adhesion molecules (CAMS). They can be produced from antiphospholipid antibody's interacting with blood vessel cells. E-selectin mediates pathogenic effects of antiphospholipid antibody's. I have had positive effects from cordiart. I purchase it through Life extension foundation in the US.

Now ,I'm looking for products that down regulate or block E-selectin cell adhesion molecules and inflammation. Currently trying beet root juice powder, Taxifolin (dihydroquercertin) bioflavonoid, PEA (palmitoylethanolamide,)PEA CURE Netherlands.

Just started PEA CURE ,for chronic joint pain. My options are limited. Restoring my vitamin D levels was the first step ! It helps eliminate anti-Beta2 glycoprotein 1 antibodies.

I am probably one of the most complex APS patients.

I'll keep you updated.

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Lone tree runner you sound very knowledgeable. How long have you had APS? What is PEA CURE? Thanks and welcome to here.

Sorry you have this disease, it does seem as though you are a “complex” case just from your description of what you’ve tried and failed and have told us so far.

You seem to be well managed now and not afraid, thats from experiencing things I’m guessing...that’s great! Cindy

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Hello Cindy, PEA CURE is medical food or a supplement that is a fatty acid chemical your body produces. I has been shown to reduce pain levels in various types of chronic pain and inflammation in the number of disease states. It has been stated that it is non-toxic with no side effects with no drug interactions. It's definitely helping with my allergies and reducing the side effects of my pain medicine. This is after four days of use.

This is a great website, it's quite inspirational! First time blogging, I saw an individual with the same experience, it prompted me to respond. I am a very quiet person, miracles do happen.

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Where do you live? In what country?

You need a Specialist of autoimmun illnesses who has had patients like you before and knows how to treat you. When we are triple-positive with high titres as we both have, we do need a Specialist-

Do you have such a Doctor? I also had skyhigh bloddpressure before I was properly anticoagulated with warfarin with a high and stable INR.

I am still on 3 sorts of bloodpressure-drugs like before Warfarin only now the bloodpressure is ok after Warfarin at a stable and high level. I selftest and have an own bloodpressure-machine.

I have also Pulmonary Hypertension and leaking heartvalves.

Pulmonary microthrombosis is among the most frequent arterial complications of APS!

Best wishes from Kerstin in Stockholm

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Wow that sounds like me, I was first diagnosed with low levels of vitamin D from my General Practitioner so I started taking a supplement for that. I went for 7 blood tests to test my PTT levels and finally was told I had these antibodies. I have to go back for the second set of tests in March which will be 12 weeks later. Did you end up having the surgery?

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Yes I did and the surgery went fine. And I hope your surgery will go fine for you too. Keep you in our thoughts!

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You have not told us in which country you live but triplepositive and high bloodpressure you need a Specialist. I hope you believe me also!

Kerstin in Stockholm

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I definitely believe in you,Kerstin. I'm sorry for the late reply ,I just left the apartment to travel out of town.

I live in the US. I see multiple specialist from cardiologist, hematologist ,rheumatologist, gastroenterologist, pulmonary specialist, neurologist endrochronogist, dermatologist, etc. I didn't know that many doctors existed.

I am have completely run out of options for blood medicine. Last 3 blood pressure medicines placed me in the ER. Because of the latest British medical Journal on Xarelto and APS,my GP put on this medicine. Both Xarelto and Lovenox lowered my blood pressure to normal. But my uncontrollable blood pressure cause too many side effects to continue taking these medicines. I felt it excellent on Lovenox and my blood pressure medicine lisinopri,l but l lisinpril caused throat to swell shut. My doctors will not put me on an warfarin because of a lack of blood clots.

I'm in the process of trying to lose weight and eliminate as much inflammation through healthy eating and Medical foods and supplements.

Kerstin, I see a pulmonary specialist too. I have asthma and mosaic attenuation of my lungs.

Do you have mosaic attenuation of your lungs and is that the cause of your pulmonary hypertension? I have found some research on APS and mosaic attenuation of the lungs.

The UK and Europe seem light years ahead of US doctors when treating APS. I am so thankful for Dr. Graham Hughes.

Thank you Kerstin for sharing with me.

Richard

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Hi LONETREERUNNER,

I do not know if I have got Mosaic attennation or not but it I know it has to do with Pulmonary Hypertension and CTEPH.

Will ask my Cardiolog next time.

Thanks for your interesting posts here!

Kerstin

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