Fed up

Hi everyone, as you can see from my post above I have had a issue with doctors and been in hospital numerous times since they took me off warfarin. 8 weeks ago they admitted me with a fever and issues with my kidney. I had a chest ct which was clear. Now I am in hospital again after chest pain to find I have a bloods clot in my lungs and signs that I have had others over the last 8 weeks even after 2 doctors appointments complaining of heavy legs and breathlessness. My inr has come back at 0.9 and now have been put back on warfarin. So am a little fed up and now have to have a heart scan as the ct showed a strain on my heart. Any ideas?

19 Replies

  • Hi and welcome.

    I'm sorry to hear your story. Could you please answer the following questions:

    1. Do you have a diagnosis of APS/Hughes Syndrome and if so who is managing your condition?

    2. Where are you from?

    I am surprised that, given the fact that you have what sounds like significant clots, you have not been put on Fragmin (Low molecular weight Heparin) injections while Warfarin is introduced and your INR is in your target range, often between 3.5 & 4.0 in APS patients.

    Best wishes.


  • Hi ,

    I was diagnosed with APS 2 years ago after a stroke. I was fine while on warfarin and then they put me on clopidigrel, my health started to detoriate from then on. I don't have anyone managing my APS as there isn't a specialist at my hospital, so basically I have a neurologist sorting my hemaplegic migraines and a rheumatologist that I have seen twice. I have found a specialist in a different region but when I asked my doctor for a referral his reply was don't we need to sort your infection first.

  • I agree with my colleague Mary's advice.

    Where do you live?


  • I need to still advise you to involve the nearest expert off our list of specialists on the Hughes Syndrome Foundation website, many of us have had to do this including maybe emailing a letter to all involved to date, (by getting addresses of secretary's) and then marking letter for the consultants and including the links to the charity and highlighting the list of specialists that can be contacted. It is crucial that you have somebody fully up to date with Hughes Syndrome/APS managing your care with all the different manifestations it can cause. MaryF

  • I have asked my doctor and they said we need to get your infection under control first. I am now considering seeking legal advice as they haven't even called me in to the doctors to have medication reviews or anything in over 2 years.

  • That sounds wise to seek legal advice but you must get to see an APS specialist asap.

  • If you have an infection that certainly does need to be got under control but of course the other issues need dealing with also. Please be very firm and point them in the direction of an urgent appointment from this list, otherwise you will have to self fund and go to London Bridge. Please if possible do not have a legal battle at this stage, it could make your care worse, and not a good thing to do when facing a) getting the right care on side and b) your current need for pretty urgent medical care. hughes-syndrome.org/self-he...

    You need to get your GP on your side and rooting for you, also perhaps your MP. You could say that you need copies of all your blood tests as you may have to urgently self refer to London Bridge due to not being listened to about an urgent referral to the obvious specialist. I know this is difficult but you must calmly chip away at this with authority. Please call in your most well educated friends or relatives so you can have a patient advocate to come to appointments with you, armed with the information from the charity. Of course you can mention that you feel you need to talk to the practice manager about the delay with your referral and also you health being jeopordized and perhaps you will see your MP, but I would save this up for if they will not budge, take that friend or relative with you please. MaryF

  • Thank you

  • Also you need to urge your GP to consider that an infection can make Hughes Syndrome/APS dangerously out of control, so he/she needs you to be referred. We will try and help you. MaryF

  • I agree with Mary. Your health is most important, the complaints can come later. You do have to be assertive, as it is you that is suffering. If you are not happy with the GP, try and see another in the practice. Best wishes.

  • It is a balancing act, as probably anticoagulation is needed and the GP needs more help, and should be referring, otherwise a self referral locally as a one off, taking all recent NHS blood tests with them... this should get the NHS care back on track! It is vital that communication channels are not lost, but also this is a serious issue and needs fast resolution. MaryF

  • Hi, sorry to sound thick but what does the London Bridge bit mean?

  • Professor Hughes now is head of The London Lupus Unit at London Bridge having previously been head of Rheumatology at St Thomas' Hospital. Many of his colleagues at London Bridge also work in the NHS at St Thomas' Hospital: londonlupuscentre.co.uk/


  • I live in the north east uk, there is a specialist in Darlington memorial hospital and have asked my doctor for a referral but he seems very reluctant to do it.

  • You have a right to a referral under the NHS 'Choose & Book' procedure. Dave

  • I agree with Dave and MaryF!

    You have got a diagnose. That is good. Now you must have an APS-doctor. It is urgent also.

    Best wishes from Kerstin in Stockholm

  • You need to write to your Go today asking for the referral to the named APS specialist and copy in the practise manager whose name you will find on the surgeries website or you can ask for it. Say in the letter that if they don't give you one you will hold them directly responsible for anything that happens to you. That should be enough to secure it.

    Put as much facts as you can in the letter with regards to the chose and book system and NICE guidelines on treatment which will make them understand you mean business. At the same time make sure that you say that you want your treatment for the infection to be continued in parallel,

    In my opinion they should never have taken you off of warfarin after your stroke once on it given you were diagnosed with APS. I feel a complaint about your Neurologist when you have sorted everything else out would be appropriate.

    Good Luck and please let us know how things are progressing.

  • I agree with all of the above! I do not live in the UK, so my experience with US private insurance may have little relavance to NIH. But one point you might raise--especially if you need to get your MP on board is: if you had been referred to an APS specialist at diagnosis, then NIH would likely have saved all the money spent/being spent on your recent hospitalizations!

    This is the point ofmajor agreement between me and my US insurance company: what saves them money in the long run is nearly always the healthiest choice for me!

  • Hi again, I do hope you follow the instructions from these people that know how to deal with this tricky illness that also so very few doctors understand.

    I am going to keep my fingers crossed for you here in Stockholm .


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