Have met a couple of consultants recently who have a gobsmackingly different opinion of Hughes syndrome!

Was diagnosed with Hughes by Hughes a couple of years ago and have had 4 positive Anticardiolipin tests over time but although I have had plenty of TIA-like events and a 'suspected' DVT and PE, there is no hard evidence of clotting e.g. DVT ultrasound doc was undecided whether it was a clot or not and sought a second opinion (registrar) who wanted me to come back in a few days when nothing showed up (pointed out that I had been on Heparin for a week but no one took any notice of that!). D-dimer tested positive etc... Long story but subseqently put on Warfarin with an ever increasing target (up to 3.5) and although I always respond better to Heparin (have injections to hand in case I fall too low), I've struggled with the INR regime for 2 years now.

Recently, I was seen by a neurologist as I have had significant neurological symptoms over the past year (thinking Warfarin wasn't doing its job etc..) and he delivered the gobsmacking opinion that Hughes syndrome didn't exist and that I just had the antibodies!! He said Warfarin and Heparin were not the right course of treatment for me and that Gabapentin or Amitriptyline might help the 'unexplained' symptoms!!

My local consultant then also suddenly wanted me to come off Warfarin although steadily (what does that tell you?). I was advised that Aspirin with Heparin injections to hand for emergencies (like air travel....as if!) was the way ahead.

I am reeling with shock, feel totally unsupported and am amazed that this dichotomy of opinion exists in the medical profession.

I have reduced the Warfarin and am now at 2.5 because I wanted to give it a go (because it was a hopeful thing to do) but my head feels full of something all the time, my neck aches, leg aches, eyesight bit blurry now and then... Am I to interpret all this as 'unexplained' or Sjogrens/Lupus (have a Sjogrens diagnosis)? Should I be brave and see?

Sensibly, I thought the best thing was to ask to be seen at St Thomas as soon as possible so that I have the cutting edge NHS specialist opinion. My GP is very supportive and says it's my decision which opinion I go with.....

Sorry about the length,

Best wishes to all,

Eagle

12 Replies

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  • Hi Eagle,

    Neanderthalic (is that a word?) attitudes, These statements are I think again down to egos!! Hughes syndrome in there eyes probably doesn't but there is no doubt that antiphospholipid syndrome, lupus anticoagulant syndrome, sticky blood do exist, I just don't think they like the name!! Professor Hughes put all this together in the 1980's, but wheels turn slowly I guess!!!

    I would personally wait for St Thomas's appointment before deciding to come off warfarin. Incidentally I wouldn't come off it anyway!!!!

    Thank goodness your gp's on side and helping you!!

    I don't think you should let these attitudes get to you, you don't need the stress,

    Hope you feeling ok today.

    Take care gentle hugs love Sheena xxxxxxx :-) :-) :-)

  • Oops meant to say, if gp is in agreement raise that inr and see if symptoms improve!! Hugs Sheena xxxx :-) :-)

  • some neurologists really do suck!! A lot of them really do have king sized ego's, i've fallen out with 2 so far, even though l have a diagnoses of hughes from london bridge and st thomas' one of them still questioned my diagnoses! They really need educating, Keep taking the warfarin , thank goodness you have a supportive gp,

    love lesley xx

  • Dearie dear oh dear. what rubbish, some speak. This is downright dangerous. Yes St Thomas' as urgently as you can, and if necessary also write to Professor Hughes remind him of yourself with any copies of paperwork and copy to him word from word exactly what has happened to you. Neurologists seem to get bad press with this condition, my son was sent to one by a very snotty PCT and the appointment went as an orchestrated one, as if the PCT were in the room, saying unlikely that a migraine lasting 15 months and 4 days with dead legs, black outs, sickness and dizzy spells and cold feet, could be related to any of my profile... he is currently better but still watched by the right people now. However my daughter at only 15 Hughes and Lupus.

    The behaviour of these dinosaurs bring the whole profession into disrepute... also some behave very badly if you don't pass blood tests... despite clinical events... same for thyroid patients.

    Best of luck and do keep pushing and keep us informed, we are interested.

    I too have had difficult path, like a lot on here:

    Mary F x

  • Mary, may I ask how your daughter was diagnosed? I have 2 daughters ages 20 and 16 and my 20 year old was tested at age 14 and was neg. My 16 year old has never been tested..

    Thanks, Renae

  • Via two hospitals she has passed an SLE lupus test and has had funny turns several times a day, and they feel she has hughes as well, on hospital notes and discharge notes, (probable) hughes bearing in mind I have a seronegative diagnosis amongst my other 4 things. My son has had some suspect symptoms and he will remain being scrutinzed regularly. Letters from London Bridge about myself and my children have also flowed! Mary F x

  • unbelievable!!!! it was a neurologist who came up with my diagnosis back in 1990 by studying the work of Prof Hughes & other authors and to date my current neurologist is very good so my experience has been a positive one unlike my old GP experience! - dinasours unfortunately still exist in the medical world egos egos egos it seems professional jealousy could be an element when in comes to understanding APS and excepting it is a condition!

    It is so sad when this happens and then self doubt can creep in in certainly did for me after an awful consult with a GP - but keep strong see someone at St Thomas's and it's your right to seek another neurologist but first try to find out if any ot them has an interest in APS.

    I could recommend several in the south west but where do you live?

    kathy xxx

  • Hi Eagle

    Terrible and Yes I had a similar experience with a neuro saying that Professor Hughes was 'just empire building'. Where abouts are you? I am in scotland and do not have anyone up here who has any idea about Hughes - its quite frightening really.

  • Nooooooooooooo! Do not come off your warfarin Please!

    I was told this by another specialist treating me for another condition a few months ago who was coming up with his own theory for my condition and just slapped the paper my blood results were on in front of my face and shouted at me that they were negative! So when I quietly reminded him that I had had a stroke and asked him what he thought had caused that he was silent as it didn't fit into his little theory! I then asked rather sarcastically wether it might just be the APS that may have caused it and after a few moments he agreed that probably it was now that he came to think about it!

    I blame a neurologist too for having my stroke in the first place as he dismissed my ever growing neurological symptoms that I had gone to see him about as fibro and didn't check a scan that would have showed him two previous TIA's. neither did he bother to read that I had also had a PE and miscarriages and all the other typical Hughes symptoms and two months later I had that stroke. On informing him of this we received no comment......probably more worried he was going to get sued!

    This week I showed Prof Hughes the letter written to my GP by the other specialist telling her to take me off the anticoagulants (luckily she allows me to make my own judgements) and suggesting his own theory for my illness and treatment. Im not going to repeat his comment but surface to say he thought much the same of it as did I. The other doctor had actually said to me that perhaps his theory when published would be called "the (his name) theory", I think that says it all! EGO's can be very dangerous things.

    Run, don't walk to St Thomas and don't change anything until you have been seen there. :-)

  • The world is vast. In my part of it my neurologist seems to know a lot about APLS and has been helpful and supportive.

    But we autoimmune patients still seem to live with the ghosts of the oft-used "hysteria" diagnoses from the 19 th Century. And why? I agree that ego has a lot to do with it. But it almost seems like the APLS treating community is drawing quasi-political lines through their numbers. The believers over here and the skeptic, it's-all-in-their-headsers over there. And why? Aren't they, as scientists, supposed to base their opinions on peer reviewed studies? Where are the peer reviewed papers in which journals that suggest that APS is over-diagnosed? Seriously. Are there studies? --because if there are I'll run to the nearest therapist with the joyful hope that by exorcising some childhood demon I could rid myself of all this medical crap! ( wouldn't you?)

    And how do we as individual patients cope with this ( other then head banging, which, of course, is ill advised while on blood thinners?). Do we politely ask for the journal articles which discount APS diagnoses and symptomology? Do we have a few rude, but gratifying zinger phrases to shoot out? ( my favorite, which I have not used yet, " yes' doctor, I see. Sludgy blood could not possibly cause my symptoms because the health and performance of xxxxxxxxx is totally independent of it's receiving food, water and oxygen via unimpeded blood flow.")

    We cope by getting information and validation on this site! Thank you all for all you do to support this community. A greater number of helpful, informed docs would be ideal, but this site certainly helps!

  • Thanks! Great points raised! I certainly agree with the political overlap, the ego trips and the ghost of syphilis past but these people want hard proof that our symptoms are directly related to sticky blood and I suppose it doesn't help that I haven't had a documented bona fide 'event'. I've even found myself hoping for a safe-ish clot lately so that I have the empirical evidence I need!

    It has really made me question it all myself but it has been helpful because it has made me investigate my own symptoms objectively i.e. I took co-codamol to try to get rid of those horrible head symptoms I was having but when it didn't get better after several hours and some food, I injected 2,500 iu Fragmin and I am a new woman today as a result (until it wears off anyway). It sort of proves to me that anticoagulation gets rid of symptoms and makes me feel better (thinking, seeing, weeing and the rest!). The trouble is that this will be deemed anecdotal but I am not prepared to wait for something to happen..... all your support has really helped to put my brain in gear again and given me back a bit of courage and faith so thank you!

    I think, though, that it might be a good idea for me to swap to Heparin (been on the cards anyway) as Warfarin does not seem to do it for me whereas I always feel miles better on Heparin (works on the antithrombins rather than the production of pro-thrombins which may be worth a thought because you can have antithrombin deficiency I think).

    Anyway, will ask about Heparin another time but thanks again for the advice.

    Best wishes, Ex

    P.S. Like your style, Gina!

  • Hi Ex

    I'm glad you're not prepared to wait for a clot. You don't want one, I was discussing this with my inr nurse, this morning, she was stunned that I was once told we'll put you back on warfarin if you have another clot! She asked, "why would they want to risk you having another clot? The last one nearly killed you!! The Blooming idiots" She's supported increasing range of my inr and is very good at pushing with gp!!!

    I think i'de go with the fact that the 2,500 iu fragmin worked for you, we not doctors but I think we know our bodies.

    If being rude, arrogant, obnoxious and prepared to risk lives is what some doctors signed up for, well shame on them!!

    Hope you feeling well.

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

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