My diagnosis

Hi all, I am new to the site and this is the second time I have tried to post this so fingers crossed it works this time!

I suffered a DVT back in 1998 when my two boys were 1 1/2 and 3 1/2 respectively so a surprise to everyone that with all that running around and as a non-smoker I'd be a candidate for a DVT. I underwent two tests for APS approx 6 weeks apart and received positive results for both, the latter test being a stronger positive so I received my diagnosis at that time. I continued on Warfarin but as the doctors struggled to settle my INR levels I was taken off after 6 months and told to “wait and see” as lots of people with APS don’t experience any symptoms. I have had no further confirmed episodes – although I have had a couple of hairy moments which I’m not sure whether it was the GP being careful or just me panicking about a re-occurrence - but as a precaution I was given Heparin for the duration of my third pregnancy and for 12 weeks post delivery. I was shocked to hear about the links between APS and miscarriage as I’ve been fortunate to have had no problems in this area (which I will be forever thankful for). I’ve also used Heparin for long haul flights to be on the safe side.

I don’t really understand how APS works because I’ve since been tested once with a negative result and so don’t know whether I’m considered to have APS or not. I’ve been suffering with severe headaches and tiredness for years and have always put it down to being a working mum of three lively boys. I’m not really sure where to go from here – whether I should be tested again or not? I’m due to have surgery in the next couple of months and I know that my surgeon is writing to the Haematology team to discuss whether I require long term Warfarin or not. Any thoughts anyone?

Thanks in advance and sorry for the length of this post!

12 Replies

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  • I am new to APS, I just got a diagnosis a few weeks ago & waiting to see the specialist. Where I come from most people have never heard of it even doctors. From everything I have read 2 positives & one clotting event is enough for a dx so you should qualify. For others they dx based on multiple unexplained mc. Some are serronegative, having all the symptoms but no positives on lab tests.

    From what I understand the levels in our blood fluctuate and at times can be too low to detect. Im not a dr but it sounds like you have APS, 2 positives, a DVT, headaches, fatigue..... I hope your medical team decides to play it safe. It's just not worth the risk.

  • Yes get tested again, you might have to push for it, since many GPs do not know about it. Better to be on the safe side and check, especially since you have surgery coming up.

    I have primary APS, I had a pulmonary embolism 2 years ago, I now take anti coagulation medication called sintrom. My INR is monitored monthly and I feel a lot more protected.

    You might have to be persistant with the doctors, just remember its your health and you need to put yourself first and insist (politely)

    Best regards

    Sara xx

  • Hi lissylou

    welcome and glad you found us. I certainly would push for further tests, although two positives and a clotting event is pretty strong indicator of Aps. Antiphospholipid antibody levels vary over time so negative results don't mean its not Aps. Your haematologist should really be looking at life long anticoagulants. The migraines and fatigue tie in too.

    Lots of us experienced same or similar, so understand and will help if we can.

    Take a look at Hughes foundation website on hughes-syndrome.org, loads of useful info and help.

    Take care gentle hugs love sheena xxxxx :-) :-) :-)

  • Hi there and welcome. where are you located. It would be very useful for you if in the UK to have a one off private appointment with Professor Hughes at the London Bridge Hospital, and/or to get your GP to refer you to St Thomas, if this is something you would like to do we will give you more infomation. You do have APS, and lots of us on here have a positive test then negative, I myself classed seronegative, but I also have SLE Lupus and 3 other conditions, a very familiar tale on here. If your condition is not correctly managed by modern practitioners who understand the score this could put you at risk, and ultimately give you a few more migraine headaches than perhaps you need to have, let alone the other symptoms. I hope you can be correctly reassessed by the right people. Do let me know if you need further help. You will find this site very supportive and informative, and also the attached Hughes Syndrome Foundation Site, has many medical papers and links which you can print out to inform those who require more clinical detail... as well as a variety of recommended books to read or buy for other people. Best wishes,. Mary F

  • Thank you all for your support and replies which I really appreciate. I actually came across this site today as I was looking for the UKAPSS, mentioned in an article about APS so I am very happy to have “found” you all. I do live in the UK.

    I also have undiagnosed knee pain which I’m receiving physio for and some wrist pain which has been troubling me for some time too. Joint pain seems to be an associated issue or am I just kidding myself? I think I will seek further GP support as I think I’ve felt as though I’ve had lots of little niggles that now seem to form part of a much bigger puzzle.

  • You can give your GP the details of the Louise Coote Lupus Unit at St Thomas, where many doctors are who specialize in this conditiion. Please come back to us if you require any more help. Mary F

  • Hi lissylou

    yep joint pains another common symptom with us hughies, although quite a few of us like Mary have other conditions too.

    I agree about st Thomas's or see the boss Prof Hughes at London bridge.

    Take care gentle hugs love sheena xxxxx :-) :-) :-)

  • Thank you. That's very kind :)

  • Sorry to keep popping up but have a further update.

    My aunt is currently being tested for Lupus - she has rheumatoid arthritis and my grandmother had something called Addisons. My aunt believes they are all part of the same "family" - is this the case?

  • Hi lissylou

    Don't apologise hon. Ask away, thats what we here for.

    Yes they are all part of the autoimmune disorders. Quite a few of us have more than one autoimmune condition. Does seem that lots of us have family history too.

    Take care gentle hugs love sheena xxxxxx :-) :-) :-)

  • Oh. Dear.

    I thought I would take the bull by the horns and contact the GP for an appointment. The "gatekeeper" wanted details about when and why and I explained that it was more important for me to see the right GP rather than any GP who may send me off on the wrong path.

    I explained briefly about my diagnosis, impending surgery and the impact of blood thinners in conjunction with having more information available to me about some symptoms that I have been ignoring for some time and that I wanted to discuss further options. Her response was very off hand. She replied that it would best for her to email ALL the GPs to see who was an expert and I'd have to wait for a reply from then all before she considering making an appointment. I suggested that she try contacting the lead GP who I felt sure would know where the expertise lay in this area and then phone me back.

    She suggests if I don't hear back by Tuesday that I should call the surgery again. I get the feeling she thinks I'm a nutter who surfs the web all day "looking" for an illness. Incredible!! :(

  • I have tested positive for APS with high level antibodies, and then subsequently tested negative. The negative test concurred with my feeling better as well. It is my understanding that the antibodies can flare (so appear, disappear, reappear). My doctor suggests that all of his patients with autoimmune conditions go off from gluten. I have done so (2 and 1/2 years now)and have not had flare-ups as serious as ones that I had in 2008 prior to my no gluten diet. I was not diagnosed with APS until 2011. I was previousuly told it was some sort of peripheral neuropathy or an atypical Guillaume Barre, symptoms typical of MS, but not MS, not Lyme disease,not B12 deficiency etc. All of these other conditions that present with neuro symptoms having been ruled out. Good luck to you.

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