Diagnosed with a PE but no sign of DVT

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Hi everyone this is quite long winded so I'll apologize in advance.

Ok so around 2 months ago I went to a&e with chest pain after hoods they found my bloods pointed to a PE so I had a CT which showed some small clots in my lungs, I was prescribed rivaroxaban and given an appointment with a haemotologist 7 weeks later! The wait was quite unbearable as I just wanted answers as the what had caused this. Well I saw the haemotologist 2 days ago and was basically told that I'd have to be on the blood thinners for life as I am classed as obese and I smoke, he didn't run any other tests and I left crying feeling very belittled. He changed my pills to apixoban as I was having headaches and dizzy spells! I have been looking on line and feel I should have had more tests! The dreaded C has popped up so much during my research that I feel so worried that I have something more sinister although I know my weight is an issue but I have PCOS and have struggled for years trying to loose it I can't help but feel that it's been used as a way of them fobbing me off again! I've had serious stomach problems for years and never been given any tests and I'm in so much pain daily with that and headaches, fatigue and feeling really depressed I just don't know what to do! I just feel everything should have been ruled out as a cause of the PE before they just put it down to my weight. Please no fat shaming me I'm trying my best to get rid of it.

Any advice greatfully recieved thanks Kate

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9 Replies

  • Posted

    Dear Kate,

    I am sorry to hear of your recent diagnosis. I feel that your diagnosis should have been more clearly explained by medical staff.

    A PE is caused by a DVT travelling to the lungs. The resulting anticoaguation treatment varies, ranging from the tried and tested Warfarin, to one of the NOAC's, Apixaban and Rivaroxaban being the two most commmonly prescribed.

    I am also on lifelong anticoagulation treatment, following a history of DVT's and PE's.

    Fortunately, I had at my disposal an excelent (female) Haematologist who advised me to switch from Warfarin to Apixaban, based upon the fact that Apiixaban has a lower risk of internal bleeding than Warfarin and Rivaroxaban and has proven to be more effective in preventing further clots. 

    I have been taking Apixaban for over twelve months now, without any side effects at all.

    The Internet can be a dangerous thing, Kate! I would proceed with a degree of caution with regard to any possible notion of the dreaded C, but would advise that you push for more investigations to establish the root cause of your current symptoms.

    Apixaban is an extremely powerful drug (it needs to be) and people can react to it differently.

    I do hope that you manage to achieve peace of mind very soon.

    Good bless!

    Nigel

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  • Posted

    Kate, I'm so sorry you've had such an awful experience. Unfortunately, this seems to happen more and more of late.  I have now had 2 PEs and an anuerism which went undiagnosed for nearly 3 years despite my concerns about worsening chest pains and headaches. These were only confirmed after CT scans. Since diagnosis I have had no follow-ups and can relate to your concerns and frustrations.

    ?There is little I can add to the response you got from Nigel other than to suggest you ask for a second opinion - to which you are entitled - in the hope that you can get answers and reassurance. So make a list of your concerns and ask your GP for a referral to another haematologist.

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  • Posted

    Hi, I am going through the same, on 11th December was diagnosed with a DVT behind knee which travelled halfway up thigh, asked had I been on a long flight, when I said no was told, ok we need to do more tests as it could be caused by cancer.  I explained that I had this year had a smear and mammogram, lucky really that they came in the last 6 months and also an ultrasound of stomach, spleen and liver as I have high iron.The A&E doctor looked flummoxed and when I said that I had started HRT about 10 months earlier, ran off to speak to an more senior consultant and came back and said it would be that, come off it, no more tests needed.  Also as I am overweight, losing some would help.  So I am now on apixaban for 3 months. Like you I have googled and went into panic mode when I lost 8lbs over christmas, thought god it must be cancer, but I now think it was coming off HRT, funny how people know what happens when you go on HRT but not what happens when you come off cold turkey.  I made an appointment to see my own GP a few days after diagnosis and said how can they be certain it was HRT and not cancer, apparently my bloods, apart from CRP (inflammation) were too good. Inflammation was being caused by DVT.  Like you I think in UK the GP's are so overworked that they do not have time to really look at their patients whole problem, just deal with each one as it happens, so will not send for tests just to check.  I was in a bad way over christmas with all the anxiety but have decided to try to live day to day.  I am having a repeat blood test tomorrow to make sure apixaban working and am hoping that bloods will be ok.  Take care

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    • Posted

      Hi thanks for the reply it's comforting to know I'm not alone, I've never had any tests to see if I have a dvt I guess that's why I feel so let down! It's the not knowing that really makes me anxious! I'm on apixaban for life now apparently they may revisit the idea of coming off them once I loose enough weight and quit smoking which im trying so hard to do but 2 things at once is overwhelming. I hate that gp's just see us as just another patient and I understand how it's not their fault being so over worked but to me I feel like my life does matter and I'm not getting the help I need. Good luck to you I hope things get easier for us both much love katrina xx

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    • Posted

      Hi, I suppose they do not know where to start to check for DVT's trust me if you had one you would know, my leg was hot, swollen and bright red and felt like I was carrying a brick around.  I have what can only be described as a string of cocktail sausages under the skin, although they are getting smaller.  I just wish instead of doing this test and that test we could have a complete body scan every couple of years to check everything out. Must be cheaper than lots of individual tests. I do not smoke but am overweight about 3 stones, which is too much but I am trying to lose it so I do not get anymore DVT's. My GP surgery has different doctors every week, they keep leaving so you never get the same one and with only 15 minute appointments by the time you have explained what is wrong you have about 5 minutes left to discuss things which is just not long enough.  I would hate to be a GP with all the pressure they are under, but I still wish they would take more notice.  Take care xx

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    • Posted

      Hi, how are you getting on, my last blood came back normal. I have an appointment with GP next week as I am only on apixiban for 3 months and not sure what I do next as it say's do not come of it cold turkey.  This GP is a older one who is rarely there so I feel I may get her to understand my worries.  I am going to ask whether my bloods indicate anything sinister and whether it is really acceptable to assume HRT caused my problems, both my sisters have been on it for years with no problems, hard to accept that I get a DVT after 10 months on it.  I am going to ask for my urine to be checked and ask for a cancer marker blood test, these are 2 of the tests recommended follwing a DVT.  Without these I cannot get back to normal as I am in full anxiety mode, I have had two really bad colds in last month, which is not like me and I cannot accept it is HRT related without more tests.  I do not smoke, am not particularly overweight, do not drink hardly at all so not sure what I can do to stop another DVT occuring.  Will keep you posted.

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  • Posted

    Is everyone in the uk? Because i live in the u.s and i dont have doctor problems. They take a lot of time with me and help me undrrstand.
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    • Posted

      Hi Samantha yes U.K. The nhs is a breaking point this is the problem it's been exhausted x

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  • Posted

    Thats horrible that yous get crappy service. You pay an arm and leg to see the doctor they should help you more and eveyone deserves good helth providers.
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