APS Diagnosis

Hi everyone

I suffered a massive bilateral pulmonary embolism in January 2016 and was on Warfarin for 6 months with no review at the end of this period. The PE was unprovoked and after reading an expert rheumatologists report at work on a case I was working on (I manage clinical negligence claims for a living) I asked my GP if he would do some screening tests and i had bloods taken in early December 2016. A few weeks later the tests came back positive for lupus antibody. I was referred to a Haematologist at the NHS Trust I work for and seen mid February 2017 and had a bank of bloods tests taken. I was counselled for lifelong anticoagulation at the same time due to my risk factors and commenced Warfarin the week after. The tests came back positive for lupus antibody. I find I have some of the symptoms of APS but given that my blood tests were about 10 weeks apart (and not 12 weeks as guidelines seem to say) I'm confused as to whether I have it. I get very tired easily and also suffer frequent pins and needles, dizziness, very dry throats, memory lapses and attacks of Shingles 2-3 times a year. I was suffering from a bout of Shingles when I had my PE last year. My job is stressful and wondering whether I have APS is really making me think of whether it is time to leave my job for something not so demanding. The Haematologist has not given a diagnosis of APS in his letter to my GP, only that I have had two positive tests for lupus antibody and that this is an additional risk factor. Any advice or pointers would be appreciated! Thanks.

7 Replies

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  • Hi, welcome to this forum. I think your on the right track - the post previous to yours answers most of your questions.

    You need to get your GP to refer you to an APS specialist, list of recommended are on the pinned posts at top of page.

    Before giving up your job, get medical help, as this can be managed. With the right treatment you may feel different.

    Also need to check out your thyroid, B12 etc - see below post.

  • See " Appointment" post from Roma Luna in sticky blood forum. This should help you, Cindy in NJ

  • I know tests are recommended 12 wks apart but you were still positive.mine were 4 mths apart.All the symptoms you mentioned are factors of APS and I would find yourself a good APS specialist and not just your GP and haematologist thou you say you are on warfarin for life so that is good.We have some great administrators on here who will answer your queries and you have had some good answers so far Lure2 Manofmendip MaryF APsnotFab

  • Hi,

    I only know our disease here which is "Hughes Syndrome/APS" and that we take three different antibodies with 12 weeks apart and if both tests positive you have a Diagnose of HS. I do not know much about the illness "Lupus"

    I do not know what you mean with two postive for Lupus antibody. There is one of the three antibodies taken for APS called "Lupus Anticoagulant" and that has nothing to do with the illness "Lupus". If you have two positive LA-tests you will get a diagnose of HS. You may have only one of the three antibodies positive to have a diagnose of HS/APS.

    You have to find that out.

    As you also have had PEs see to it that you do not go around with too high bloodpressure which together with PEs may be a symptom of HS. I had BP in attacks and today I have Pulmonell Hypertension. I have had micro-emboli and they are not seen on a Scan and showing in that high bloodpressure perhaps because I did not "feel" the PEs and only had pain very seldom together with exstremely high bloodpressure. HS is a very tricky illness and can hide. We need a steady and rather high INR (if we use Warfarin that is) at 3.5 - 4.0 to protect ourselves as anticoagulation is the key to feel much better.

    If you have Lupus Anticoagulant you can not take it again when you are now on Warfarin as it will give a false answer. But never stop anticoagulation if you may have HS! The other two antibodies you can take even on Warfarin (aCL and anti-B2GP1).

    Exstremely important to have a Specialist specialized in Autoimmun illnesses if you get a diagnose of HS. There are several autoimmun illnesses going hand in hand and a Specialist know to distinguish between the different symptoms and to give the right drug for it. HS, Lupus (SLE), Sjögrens syndrome, Thyroidea-issues are sort of "cousins" and are often mixed together by a Doctor who do not know so well.

    Best wishes from Kerstin in Stockholm

  • Well done!

  • Hi the trio of disease is often Hughes Syndrome/APS, Sjogrens and a Thyroid condition. Thyroid conditions are often missed due to the over reliance of the TSH test, many do their testing privately via the recommendations of Thyroid UK, I did this and it showed I had a Thyroid condition, a slow thyroid in addition to Hughes Syndrome/APS and a host of other things. Also it is advised to check your levels of B12, D and Iron. Alongside this often sits Sjogrens Disease, so it all comes a trio of disease in many cases. The Lupus Anticoagulant test is indeed a Hughes Syndrome/APS test. I would be very very careful about coming off anticoagulation if you have had a clot. The three tests for Hughes Syndrome/APS that we recommend are below? I am guessing they did all of these?

    londonlupuscentre.co.uk/hug...

    We have a list of recommended consultants across the UK, these are as pinned post on the right hand side of the forum. MaryF

  • Thanks so much everyone for taking the time to respond. Kerstin, I meant to say that i have had two Lupus anticoagulant antibody tests 10 weeks apart (both before I commenced lifelong warfarin last month) and both were positive. I am not sure exactly which test it was for the lupus anticoagulant but I can easily obtain my haematology results. I will certainly be following up on the suggestions and if I can raise the funds perhaps make an appointment with Prof Hughes or contact the Rheumatologist in my local area from County Durham & Darlington NHS Foundation Trust from the list Mary has provided. Many thanks. A great forum!

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