Newly lupus anticoagulant positive and feeling confused

[Corks12]

Hi all, I have just found this site and would love if anyone could help me understand the meaning of my test results. I know your not doctors but just general information would be amazing. Hope I haven’t given too much detail below, just trying to build the picture. I am seeing a rheumatologist for a review but not until October. I have tested positive for lupus anticoagulant twice, 12 weeks apart, so they have said my test is a positive. I know I didn’t test positive for the other antibodies (I believe there are three different types). Reason I got tested was that I had a weird blood rash on the End of my toes, at first I left it and it cleared up after a couple of weeks but it came back 6 months later, but this time I had pins and needles in my feet with it, and they were cold. Again it went again after two weeks. I thought it was a weird rash linked to Covid as in the press they were talking about Covid toes! That’s when the GP sent me to the specialist. They didn’t see the rash as it was gone by the time I got the appointment. They have said my immune system has something wrong as I have lower white blood cells and elevated IgM (for over 6 months now) but they don’t know what is wrong, so just monitoring every three months. I haven’t been given any advice re the lupus anticoagulant as I haven’t had a clot. In essence it seems to be nothing is done or explained to me unless I get a clot, which I am finding really stressful! My dad had sticky blood and was hospitalised for one and half weeks in the states and nearly died so I’m pretty scared of suddenly developing a clot. I have constant headaches for 6 months. Just came on one day in Feb and have pretty much stayed at varying levels most days. Neurologist said it’s migraines but I don’t feel it is. The neurologist wasn’t interested at all with the positive lupus anticoagulant test (he don’t even flag it up in the meeting). Rheumatologist doesn’t seem concerned about the headaches. I’m worried they are linked to the positive lupus anticoagulant as I have seen a lot about headaches? If anyone could explain what a positive lupus anticoagulant test means I would be so grateful as I am very confused and would like to have a better understanding so that when I see the rheumatologist I can ask better questions. Does it mean I have APS but only when I get my first clot? And do you think it would be worth me paying to see a private specialist who knows about it? Or is it a case I am just overthinking it all and it’s not a big deal having the positive test. Thank you so much if you took the time to read this!!!

[Hidden]

Could you share any other antibody test results ? For APS to be diagnosed, several criteria should be fulfilled. You can look it up on line. It requires a clinical event (e.g. DVT) and specific positive anybody tests results 12 weeks apart. You describe being stressed out about the events, I think the best idea is to see a qualified specialist in APS. The forum is a great source of information and the ppl are very helpful and knowledgeable.

[Fra22-57]

You don’t need to have had a blood clot to be diagnosed and treated.I haven’t.You do need a specialist in APS thou.One who sees the full picture of all things going on.my rheumatologist who specialises in it assessed and tested me.

[Lure2]

You say we are no Doctors here which is correct. I have APS myself since 2002 and positive to all the 3 antibodies and live in Sweden. I have been here several years and read a lot of different "patient-histories". I also have neurological symptoms like you. You tell us about pins and needles and headache.

What is interesting is that your father also have got APS. APS may run in families.You need a Specialist which is the most important factor when you have got APS!

I wonder if you have tried a daily Baby-Aspirin for your daily headaches? That is what they usually start as a sort of "thinning the blood a bit". You probably know we have too sticky blood that has to be thinned. A Baby-Aspirin is not an anticoagulating-drug but may ease a little. Try to get to that Specialist as soon as possible. The Neurologists often do not understand that we have sticky blood that has to be thinned. I have a Rheumatologist and a Hematologist which are the Specialists that may understand this illness.

I think you need anticoagulation of some sort but for that you must find a Specialist. I do not know if you live in the States or in the UK. The illness is the same though wherever you live and once in your body it will never go away.

Read "Sticky Blood Explained" by Kay Thackray. She has neurological symptoms herself and tells about it in her book.

When I read her first book I understood that I had APS. I had TIAs and microembolies and they were not seen on a Scan as they were too small but dangerous without anticoagulation. After Warfarin practically all neurological symptoms have disappeared but I need an INR of 4.0 to be without symptoms.

We are all different here but the main thing is a Specialist and a proper anticoagulation.

Good Luck!

[GinaD]

I agree totally with Lure 2's post above. APS is still a "new" disease (first described in 1984 by Dr. Graham Hughes) and many doctors are unfamiliar with it. Antibody levels can rise and fall depending on which random contagions you may have come in contact with -- which is why the "12 weeks apart" criteria is there. Concerning the rash: its too late for this one, but if you get a rash in the future, take a picture. There are sites on the internet which can point you to doctors who are familiar, and effective in treating APS. I believe all of us would suggest that paying for a private, or (if in US) "out of network) doc who has a history of effectively recognizing and treating APS in all of its forms, is well worth the money -- if you can afford it.

Again -- one hurdle toward diagnosis is the simple (you would think more docs would "get" this) fact that the circulatory system goes nearly everywhere in your body. Therefore, which symptoms your APS produces depends on where in your body the clots are likely to form. Once a capillary is damaged by the remains of a clot, new clots are most apt to form there -- but not always! Add to that the fact that antibodies do not always present a clear picture of possible disease (they rise and fall with one's environmental exposure): and so we have 2+2=s "we don't know!"

If you need help locating an APS specialist in your area,, I"m sure some of us will be able to offer doctor names in a nearby place. And there are websites in the UK and the US where such doctor lists are avaialble.

[Ladydale]

Hi I was diagnosed in 2008 after a PE. Usually you only go on blood thinners if you have a clot. You do have APS if you tested positive 12 weeks apart.I believe it's something you are born with as when I had my daughter in 1985 I had a placenta abruption and this is common with APS as well as miscarriage.my daughter had a miscarriage but no clot and she takes aspirin which thins the blood too. Basically your body has antibodies that mean that your blood clots more easily than others.migraines are a classic sign of APS as well. I take warfrin for life due to my clot. I have bouts of needing iron tablets too due to anaemia. Basically our blood is too thick and prone to clotting more easily.if your worried take half an aspirin a day to protect yourself.this is what my daughter was advised by her GP

[MaryF Administrator]

Hiya normally the GP or consultant will do three tests, and then repeat 12 weeks later, it is not unusual to also have poor thyroid function, low vitamin D, Folate, Ferritin and B12, it is worth really making sure they test you adequately as many things can overlap with autoimmune disease. MaryF