Moral dilemma

Ok so I have a bit of a dilemma at the moment.

I still have no firm diagnosis of anything really and am still reeling from the latest hospital stay and the outcome of the tests I had.

So anyway onto the next thing!

I have had an extensive history of clotting both in my legs and in my lungs. Have now got a filter in my aorta to stop the little buggers getting to my lungs which I am pleased to say is working very well in conjunction with the Rivaroxaban I take daily.

However I now seem to have developed another dvt in my lower left leg. I went to see my gp on Thursday last week and he arranged for me to have an ultrasound scan on Friday morning.

Got to the hospital booked into the unit had bloods taken, bp, pulse and sats done. Bp was high but sats were quite low, 93. But I felt OK bit out of breathe but normal for me at the moment.

Went of for my scan only to discover they do not scan the lower leg, hospital policy, so the guy scanned my thigh and behind my knee and then declared that I had no clot in my thigh! To which I replied I know its in my calf!

I was then sent back to the unit to see a doc. Basically even though I show a lot of the symptoms of a lower leg dvt, pain, tenderness and swelling, I couldn't be diagnosed with one. I have been given another scan appointment for this Friday to see if it is still there or if it has travelled up to my thigh.

Now my dilemma is the following.

Do I try to follow my normal routine and stay as active as I can or do I make my clot worse by resting and taking it easy. I have talked to my hubby about it and he says to do what I think I should do!

My thinking is that if I make it worse they will have to do something about it and I can then push to get some form of testing done to find a cause. Haematology just don't want to know anything about testing to find out why bit I need to know for my peace of mind and then I can also inform my 2 boys of what they can do to avoid anything like this.

I really don't know what to do. I am 50/50.

I am sorry for going on and hope you are all feeling fab!!

Sharon XXX

34 Replies

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  • Hi Sharon,

    Sorry to hear you're having a rubbish time.

    Have you been tested or diagnosed with aps as this is common with lupus patients and causes blood clots.

    Did the doctors give you any advice on the best thing for you to do? If not I'd maybe give your GP a call in the morning to see what they suggest.

    I hope things improve for you soon x

  • Hi thanks for replying.

    I was tested last year, I think, for lupus but when they took the blood I felt really well and the test came back as inconclusive so I was told.

    It has been left as that and now all the other docs I see see that and say I have been tested for lupus and it was negative. No one will do another test so i am stuck.

    I have been given no advice because as far as they are concerned I do not have a clot but having had them before I know I do.

    I know what right thing to do is but should I do that or try to get some answers by not doing what is should!?!

    I know this is confusing!

  • I can't stress enough that you should be tested for APS/Hughes syndrome. It can cause many symptoms but the most important thing is that it can cause clots anywhere in your body.

    Please please check that you have been tested for this, I assumed that most people were who had a clotting event.

    There is a Hughes foundation charity website which can provide you with lots of information plus blood tests that would need to be done to confirm this. Some people can

    Test negative despite clotting events and symptoms and are seronegative.

    One of the blood tests is confusingly called lupus anticoagulant which isn't actually a test for lupus but for aps.

    There is Hughes forum on here too where there's many many people with a wealth of knowledge.

  • I have been tested for Hughes and was negative.

    I am fighting a loosing battle with the haematology team I am under and my gp can't get anywhere with anyone at the hospital. He won't test me for lupus due to budgeting costs. He doesn't think it's whatbi have but he is at a loss as to what I do have.

    Am looking at money to see if I can go private but it costs £200 just for a consultation so don't think that will be possible.

    I just don't know what to do anyore

  • I've just noticed that you are already anticuagulated and that is the main treatment for aps so at least that should help in preventing clots.

    I can't advise you on what the best thing to do would be as I'm not medically trained and feel the best person to discuss this with would be your GP.

    It sounds like you've really had a rough time of it and I hope things improve for you soon x

  • I am now on Rivaroxaban as the warfarin I was on was ineffective even when paired with heparin/clexane.

    It still does not stop me from clotting. Nothing does. The dose I am on is not even on prescription as its not meant to be used for what it is.

    I am not asking for medical advice as I stated but I understand it is confusing.

  • There is a list of consultants on the Hughes forum of consultants that specialise in aps.

    It might be worth seeing which one is closest to you and asking your GP for a referral. That's what I did after 2 years of symptoms and being unwell. Thankfully now I'm under the care of a wonderful consultant.

    I think you need to find the right doctor who will listen and join up all of the dots.

  • The one for my area is the haematology team I am under now so that won't work. The other one requires a lot of bloods to be done just to get in and my bloods are always normal. Even when I have been seriously ill with a p.e my bloods were all normal.

    I am unable to travel to the next nearest hospital due to having to be home for my children when they get out of school.

  • If you post on the Hughes's forum you might get some help, they are very knowledgeable.

    Both Hughes and Lupus can be seronegative. I can't believe the hospital wouldn't scan your leg with a suspected clot, it wouldn't have cost anything extra. I hope you get help.

  • I will do tomorrow. Thanks for replying.

    Apparently it's hospital policy not to scan below the knee bit when o had my first dvt a few years ago they did scan my lower leg. It was in a different part of the hospital so maybe it goes by department.

    I don't know!!

  • I haven't actually been in your situation but well understand the dilemma of whether or not to let things get so bad that there's no choice but to rush you into hospital and do the tests you need in order to establish or rule out something.

    Believe it or not I've had five hospital stays this year - the second one as a result of taking a drug I knew was making me terribly ill - not once but three times. The GP and my rheumatlogist all refused to accept that Azathioprine was giving me pancreatitis although I knew it was. But I also knew if I didn't half kill myself by taking it again as they wanted me to - I'd be regarded as being too introspective about drugs. It was finally listed as a drug I am allergic to but that doesn't begin to explain the dire symptoms it caused.

    Sorry this is a very different story to yours but at least goes to show that you aren't alone in wondering whether to allow a medical emergency to develop in order to be taken seriously.

    Can't advise of course. Bad times for you - hope they improve soon. Twitchy

  • Thank you for replying.

    I am so sorry you had to go through that! Having had Azathioprine for my Ulcerative Colitis I understand how it made you feel!!

    After yet another sleepless night due to pain in my leg I have decided to just carry on as much as I can and see what happens on Friday.

    I think the thing that annoys me most is that every time o am admitted, either through A&E or by my gp sending me through the gp unit I am always asked if I know of a cause and when I say haematology are not looking they all get the look of 'well that's not right' but they never do anything about it.

    I am going to ask if the doctor I see on Friday, after my scan, can do some testing to see if they can find out why. Haematology always gave me the excuse of needing a clean blood sample. No medication is in the sample but if this is so how do they ever diagnose anyone with anything as most people are on some form of medication for something or other when they come into hospital. I am thinking this was just an excuse to get me to stop asking and the possibility of my haematologist having to admit he doesn't know what is wrong.

    I would prefer that to being fobbed off and lied to. At least if he admits he hasn't got a clue that might then give my gp a chance to refer me to a specialist hospital/centre. Even if it meant a few days away from home I would do it.

    Hope you all have a wonderful day.

    Sharon XXX

  • Sharon this all sounds like a nightmare for you. I hope it resolves without you having a full blown thrombosis. There must be a route you can go through to access proper care - write a letter of complaint to someone high up in your health authority or board or complain to your MP perhaps? No one person should have enough authority to block you from getting proper tests you need and deserve. And yes as you say, most people who are sick or living with a chronic condition are on some sort of medication! Twitchy x

  • Have already had multiple p.e and dvts.

    Recently found out that my last major p.e, when I had my filter pit in, has not dissipated as it should so has now formed a mass in my left lung. Also got extensive scarring on the outside of my lung which rubs up against the chest wall causing a lot of pain.

    Nothing is going to be done about either for now. Most of the procedures involve major surgery and I do not want to go down that route just yet.

    I have thought about complaining but he is the head of the department and I cannot get to the next hospital where I would have to go for treatment.

    I will see what the outcome is on Friday and take it from there I think.

    Sharon XXX

  • Speechless - don't know how to advise - this is just so wrong. I see why you don't want to be viewed as a complainer but you don't want your life put at risk either. Could you meet this doctor in person and present him with the facts about your health and ask him about being tested for Hughes Syndrome? Being this obstructive flies in the face of the hypocritic oath. Maybe a different more one to one approach is required now? Tx

  • I have been tested for Hughes by my gp and was negative.

    The haematology doc I see every 4 months and each time I see him I tell him what my day to day life is like and ask to be tested.

    And every time he says need a clean blood sample and even if we find the cause it won't change your treatment.

    I keep saying to him its not just about the treatment any more. It's now about my mental wellbeing! People do not realise how exhausting it is being so poorly constantly, yet eating right and exercising and ticking all the boxes and yet to still get the overwhelming exhaustion hit out of nowhere and get yet another blood clot.

    Grrrr I am sorry for ranting I could go on for days. This has been on going since 2010 and I am still no nearer to getting any answered.

    Plus add to the mix that my youngest son, 11, is showing the same symptoms I do when I get a flare of whatever this is. I have taken him to the gp with it but like me his bloods are all normal. I am thinking if I get a diagnosis so might he!

    Sharon XXX

  • I'm very new to all the sticky blood issues but last night I joined the Hughes Syndrome HealthUnlocked to ask a question about timing of blood results.

    The admin person, MaryF, replied very helpfully with a link to a page about Seronegative APS/ Hughes, which she has herself. I read it and definitely wouldn't fit the diagnostic criteria but I'm pretty sure that you would. I agree that putting a name to your symptoms is very helpful psychologically.

    I think you should read up about seronegative Hughes and look at the list of doctors who specialise in it (she also posted this on my thread) and find your nearest one. I know it's hard with the kids and school collection but perhaps you could try an after school club for those occasional days? It's most important that you are under the right consultant for your problems for your sake and your son's. If you want these links then just go to my profile and my last post on the Hughes forum should be on there. You will also need to join this community if you haven't already but that's easy peezy! Best of luck. Tx

  • Ps here's one of her comments:

    10 hours agoMaryF Administrator

    Please note our pinned post on Seronegative Hughes, on here, and also it gets a mention on the charity website, some people remain stubbornly negative, I am one of those, although have passed a couple recently and also for Lupus among many other things: hughes-syndrome.org/abo...

    MaryF

  • Thank you for replying.

    I have joined the Hughes forum and looked at the list of specialists in my area. One of them is the haematologist I am currently under and the other one is a neurologist who I have tried to get a referral to before with no joy as my bloods are always normal.

  • Oh no! I know the feeling of bloods failing to represent you but facts are facts - you have had lots of blood clots despite living a healthy lifestyle - this can't be disputed whatever the bloods say. I would print off the stuff about seronegative Hughes and take it to your GP and ask for help as soon as possible. Tx

  • Ps my neurologist was much the same but he's not a Hughes specialist. I have never had a pe, dvt or thrombosis so not going to fight over my blood results if they come back clear. But if I had suffered these then I'd fight my corner tooth and nail. X

  • I have been for 5 years but i am tired now of getting the same answers or lack of.

    Hence the drastic thought of making my dvt worse to get some answers.

    I just don't know what to do anymore. Fed up of feeling like crap bit looking nice and healthy!

    Sharon XXX

  • I have had numerous dvts and Oracle's. There are lots of tests available to find out what's causing them.I really wouldn't advise you to do anything to make your health worse.

  • There are a number of conditions that cause thrombophillia. I have it and it isn't related to my lupus. There are numerous tests available to haemotologists to see what's causing the clots. I really wouldn't advise you to do anything to make your condition worse.

  • I understand that there are various tests available but if the consultant I am under won't test me how else am I going to get any answers. I normally would never even consider this bit they have essentially backed me into a corner where I feel this is my only course of action left.

    I am constantly being fobbed off by one excuse or another and I see this as my chance at getting some answers or at least get the ball rolling on some actual tests being done.

  • Exercsing breaks up clots! Keep exercsing. My brother almost died from clot. They said because he jogged everday, it saved his life. He has same screen put in that you have and on blod thinner. He tested positive for intrinsic lupus anticoagulant. And still is jogging. I have tested postive for prothrombin gene mutation..clot more than others kind of mutation. I am on natto k enzyme which helps break down fibrin in the blood. Hematologist said ok, unless i have a stroke. So far so good. Pain in my left hamstring and calf forever. Thing its fibro. Doubled up on magnesium supplements, and pain subsided. Had it so bad, i couldnt sleep. Better.

    Hope you find answers

  • Thank you for replying.

    I walk 2km a day every day and I still clot.

    That is why I am thinking of this.

    Glad you and your brother are doing better now.

    sharon xxx

  • Sharon...i understand..my brother had multiple clots too, and still keeps moving. I should move more myself. If it helps to alleviate some stress for you, clots can break up on their own i believe without execise. Im going to keep moving. All you can do.. Take care

  • Thank you.

    I must be some freak of nature I swear!

    Since my first clot I bought a treadmill and have been walking every day.

    I still clot.

    The last major p.e I had in February last year still hasn't gone and have been told it won't now. So I have that stuck in my lung!

    It is what it is but there is only so much I can take.

    I will keep moving as its also my me time! I have a decent smartphone and I have downloaded some movies onto it so I watch them as I walk!

    It's very calming and quite relaxing.

    Take care hun XXX

  • Sorry shazzros...that must be upsetting. I find eventually i get to a place of acceptng things as they are. Sometimes i get angry, and fight it. Sounds like you have accepted. Good for you! Take care...keep walking!

  • sorry Sharon I'm having difficulty replying. The response either doesn't go, goes twice or goes halfway through. I do sympathise. I have had 6 days and 2 pes and it isn't much fun.

  • You must be so frustrated! I don't understand why the hematology guys don't test you - if they have an issue with "clean sample" have they suggested ways in which you can resolve the impasse? Just dismissing you isn't enough, it is their job to guide you.

    Going back to your dilemma - I would personally not do anything to put my health/life in jeopardy even if that means people would take me seriously. I'd try to find another way - be that camping at the hospital's CEO's door clenching a complaint letter in my hand, or selling stuff on eBay and generally scrounging off my family and friends to get enough money for a private test (there are many private phlebotomy labs nowadays that can do whatever test you want and for a fee they can get someone to explain the results too).

    It is amazing that no one has taking an interest in your propensity to clot, despite the exercising and medication you're on. This tells me that the people you've seen don't have the requisite knowledge so they end up fobbing you off rather than addressing it. Hmm - I would probably try and research as to what are the best specialised hospitals in my area, then pester my GP to send me there.

    My view is - putting your life and health in jeopardy isn't the answer - I'd find other ways.

  • Thank you for replying.

    This week has been just awful. Aside from my own health issues my youngest son collapsed at home on Tuesday and ended up in hospital. Turns out he has got pneumonia! So I spent 2 days on the children's ward with him while they found our what was wrong.

    It was awful! His sats had dropped to 90 even on oxygen and he could walk or stand on his own. Even they were horrified when I told them of my medical history and haematology's aparant lack of interest in why.

    He is home again now but still quite poorly. I am knackered!

    I am looking into where the nearest specialist is so will give some more thought to that.

    Sharon XXX

  • As if you didn't have enough on your plate, now this. Your poor son!

    Take care of yourself, you must be exhausted x

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