So frustrated by hospital appointment

Hi all,

So today was my long awaited appointment with Dr Karim (as recommended from the list on here). I wasn't sure what to expect and, as a result, probably hoped for too much. I took my list of symptoms, my history, my questions and the things I have been diagnosed with over the years, which to give him due credit he read through. I was disappointed to be told that joint pain and fatigue are not normally symptoms experienced by hughes patients and that if the results of the antibody tests they did today (11 vials with a trainee phlebotomist = great fun) come back negative them my APS has gone and, while they will run other tests, he wont offer any treatment for the fatigue and pain which is ruining my life.

On the positive side he said that if the tests are still positive he will send me a prescription for plaquenil so I don't have to wait until I see him again in late November. I knew I wasn't a candidate for warfarin because all my major events have been triggered (DVT by pill and miscarriages including one at 20 weeks), I have been lucky enough not to have a spontaneous clotting event so far.

I am so depressed, I now have to wait for a ten year old diagnosis to be reconfirmed (unless my antibodies have disappeared in which case I am waiting for it to be refuted) before anything can be done. Right now I just feel rotten all the time and life doesn't feel worth living. What's the point if all I have the energy to do is drag myself through work then slump in a heap on the sofa all night. Ive been patient waiting for this referral and I just want to feel better.

19 Replies

  • Hi there.

    I'm sorry that you have had a bad experience today and that the Dr advised you that if your results come back negative then your APS has gone. This is a very strange thing for the Dr to say.

    I am going to ask my colleague, MaryF, to reply to you too, as she has experience of seronegative APS.

    Best wishes.


  • Thank you Dave.

    I think that it was partially my fault it wasn't a positive experience, I expected too much. All the same I was surprised to find a doctor who is on the recommended list talking about negative results no longer requiring any treatment and the latest research indicating that warfarin does not need to be life long any more. Some of the things he said sounded like they were about doctors leaving themselves open to being sued, e.g. If someone on warfarin has negative antibody results then they might not need to be on warfarin as if they had a bleed then people would question why they were on it (for the record I wasn't trying to be put on warfarin at this stage).

    Dr Karim was very nice and made me feel comfortable, I do wish hospitals would share records though, all he knew was what my GP told him which was practically nothing. I'm definitely applying for copies of my own medical records now because I would like to more prepared next time.

  • I am glad to hear you are talking about next time, you must go back armed with as much information as possible, it is very frustrating having seronegative results I know only to well.

    I have only had a few positive antibody results and a couple of other positive tests. However I am one of those that seems to really have clots in pregnancy and also I have a host of overlapping conditions.

    I do still keep a look out for myself as I understand fully that this condition does not go away and can also be very unpredictable etc. I have been on Aspirin a very long time before I got as far as going back to London Bridge and St Thomas' hospitals again, as I was feeling very unwell and rightfully suspicious of my symptoms.

    Please do make sure your history is written up and do not lose heart, and if necessary take your most trusted colleague, friend or relative to back you up as advocate. You need to achieve him listening to you fully and you feeling fully listened to. When is your follow up appointment? Not too far in the future I hope. Please don't despair, many of us have been there and understand how you feel. MaryF

  • Thanks Mary. I'm always impressed by the speed of replies and quality of advice here.

    My follow up appointment is 23rd November, so not too far away. I will get the blood results before then though and if they are negative I will search out the sero-negative papers you posted and print them out.

    I was really surprised when he said fatigue and pain weren't typical. Everything I have read on here and in the books suggests this is not correct.

    I'm not going to give up. I am 38 years old, I shouldn't feel like 88. Right now my 69 year old mother is significantly fitter and healthier than I am.

    I'm so grateful for all the support on this forum. Thank you again.

  • I know I am like granny's old cracked record, but make sure your B12, Ferritin, Vitamin D is spot on, and also make sure your Thyroid levels are looked at, as we all need this done regularly. MaryF

  • This is really depressing as it sounds like they are swinging over to the USA system and getting very litigious! More money is spent on the NHS either fighting medical suits or advising Doctors on how to avoid them instead of actually treating patients! One wonders what the point will be of taking a hippocratic oath before long because actually they really should just swear to protect their lord and masters in the CCG's rather than do all they can for patients!

    I also don't understand this swing away from giving warfarin if tests are negative because they are frightened of a bleed. They are advocating swapping from one of the safest and longest used drugs around for a new and virtually un-trialled drug on APS patients! As I understand it its only been trialled on a very small number of patients with an INR under 3. If they suddenly just open the flood gates and swap everyone onto it they will open the door to more law suits - just look at what has happened in the USA.

    At the end of the day it is your body and no one can force anyone to take something that they don't want to take. NHS guidelines state clearly that patients have to be willing participants in their own care and above all do have a choice. So if you want to stay on warfarin then you must speak up and say so.

    AS was said on one of the Patents Days by a speaker on this subject, the problem is always going to be how you convince someone to stop taking a medication that has served them well for many years and is tried and trusted, for a newer not tested drug that has the potential to cause serious side affects even terminal ones. Its not like you can stop the drug and the side effects go away. If it has caused a stroke and you have been left with life changing deficits its difficult to say, whoops that was a mistake we should have kept you on your old meds!

    Im sorry to say this but if things don't go well at your November appointment you may need to consider a Christmas present to yourself of a private appointment at LB Hospital.

  • Hi. I totally agree with mary.

    Let us know how you get on.


  • Not sure what he's talking about. If he IS an expert in APS then he should know that joint pain and fatigue ARE symptoms of this illness.

  • Thank you to all of you. I really don't know what I would do without the support on here. My husband, mum and few friends try to understand but they can't really.

    I sometimes feel that the medical profession just want me to have a nice big untriggered clotting event so I fit more neatly into their mould.

  • What I don't understand is how can they consider a blood clot due to birth control as being unprovoked? Normal people do not have blood clots from taking birth control, nor do they usually get DVT's from minor leg injuries. If you have two positive antibody tests 12 weeks apart, and one clinical event (your DVT) it doesn't matter whether or not it was provoked, you meet the Sapporo criteria for APS. Don't let this doctor walk back your diagnosis. I know some people can go for ten years without clotting events, but that doesn't mean the disease is gone. Also, some people still have clots even when their antibody levels go away. They don't know very much about this disease. Any how, I hope you get all of your medical records and fight for your diagnosis.

  • Hi Phoenix. .I have APS and have RA and Fibromyalgia too so know true well about the joint n muscle pain and like life is being drained from me at times.Have you been tested for those two diseases as well.You are such a star to still being able to work with all your discomfort so don't give up on yourself.

  • Here is a link to the Sapporo Criteria for the definitive diagnosis of APS and also the updated criteria in Sydney in 1999. Apparently you have to have medium to high positive tests for APS antibodies and 1 clinical event to be diagnosed. I still think that some of the low positive APS folks still have the disease. They actually need to get together and define one specific criteria for all countries to follow when they diagnose APS/Hughes Syndrome.

    Here is the link:

  • I've had negative tests for RA but I don't know about fibromyalgia, I have my suspicions but I guess I'll see if the armful of blood they took off me shows anything up.

    It feels weird to be scared of losing the diagnosis but for the last 10 years I have felt like I knew what I was dealing with, a label I can use as shorthand for 'I'm not lazy/exaggerating/making it up, I'm actually not well'. It shouldn't be this hard to get the medical profession to understand.

    I'll keep you all posted.

  • My Neuro told me his patients don't get diagnosed for this condition. Criteria does need to HELP rather than PREVENT patients from receiving prompt treatments but drs always come up with a bag of excuses and are at times in denial, they are also human too. I would also be wary of "doctors list" - it's great to have these but if you assume that these drs will bend backwards to help might get disappointed; different drs "favour" different types of patients unless your antibodies are CONSISTENTLY HIGH. Who would be consistently high? Not many, I suppose (probably this happens all the time on medical texts but not in a real life) so the criteria is probably set for top 5 percent of patients and the rest will be forgotten. They don't want too many patients, they just want to treat a small number to keep going. They haven't got time to deal with so many patients, to put it bluntly.

  • Hi,

    We understand exactly! You are not lazy or making things up........

    Have you read "Sticky Blood Explained" by Kay Thackray? If not, do read it and also perhaps your husband and relatives if they do not understand. It is a very good book to understand how it is to live with this illness.

    Best wishes from Kerstin in Stockholm

  • Clinical environment has been getting tougher by reading some threads and posts of reports (have you seen some APS related threads over Lupus forum?)

    I took this book to Prof D (not so long ago) he threw it back at me, stating "oh I have seen that already" showing distaste. These star clinicians must be over-working and when they are, their standard goes down. After all, they probably wouldn't like shifting through batches of patients day after day. Imagine that. I never had any attitude like that with Dr K so I was quite taken aback at the time. Then he's a special kind of person (hope he's well) :-)

  • Hi Kerstin,

    I just bought the 2 Kay Thackary books but so far I've only skimmed them. My husband read the chapter for partners and families, he's pretty understanding mostly anyway but I know he gets frustrated when I'm saying I can't do stuff and I look fine.

    It does look like a great book, if a little scary.

  • SO. I just got a sheet of confusing blood test results from my hospital appointment (copy of what has been sent to my gp). The covering letter says that the blood tests show I have positive DNA antibodies, my ESR is 93 and CRP is 33. Lupus anticoagulant was strongly positive consistent with previous APS diagnosis.

    The tests themselves - I am going to type out all the values in bold on the letter (indicating they are outside the normal range) and put the specified normal range in brackets. and hope someone knowledgeable can tell me what they mean. I understand some of them but not enough. I hope this is ok to do.

    RDW = 15.1 (11.0-15.0)

    White count = 14.8 (4-11)

    Neutrophils = 10.4 (2.0-7.5)

    APTT = 65.8 (23-35)

    APTT ration 2.18 (0.76-1.17)

    CRP 33 (<10)

    Erythrocyte Sedimentation Rate (ESR) = 93 (1-10)

    It also says that the Beta 2 Glycoprotein 1 Abs was negative.

    The letter tells my GP to send me to the opticians for a baseline eye test and retinal photographs then start me on 200mg daily of hydroxychloroquine - which I think is good news.

    As ever, all advice and assistance received with eternal gratitude.

  • I can't comment on all these tests, but having high Sed rate and CRP means there is inflammation in your body which may be the cause of your fatigue and joint paint (They are non-specific indicators of inflammation). Having high antiDNA antibodies is an indication of lupus.

    Other people here will know more about APS.

    It is good for both issues that you have been put on hydroxychloroquine. It can really help with your aches and pains and fatigue, but it takes a while to get the full effect. I felt better little by little.

    I'm not a doctor, just a long time patient.

    I think many people here will think you should be treated for APS. But I couldn't get a heperin trial in the US, so I just started aspirin, which is over the counter and inexpensive and it does help.

    It's funny that so many doctors are just willing to blow off your pain and fatigue as if it is nothing, but now you know it isn't nothing. Hold on to your test results in case one day they look perfectly normal.

    Hope you feel better soon.

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