Feeling scared and confused

Hi. I had an unprovoked PE 5 weeks ago diagnosed by CT scan with contrast dye. My main symptom was a rapid heart rate over 200 beats a minute. When I read about symptoms this doesn't get mentioned so I'm concerned in case there was a heart problem as well. I am having lots of tests as have been told I may have an undiagnosed cancer. I was diagnosed with overactive thyroid last August and iron levels dropped at the same time. I also have a slightly raised platelet count. I have been tested for Jak 2 and that is negative. Could there be a link with the hyperthyroidism? I am on Dalteparin injections daily. I saw a cardiologist at the hospital I was taken to for the PE before discharge and he said if I was his patient I would be on anticoagulants for life now, but when I saw my GP she said they will take me off the medication 3 months post-PE and test me for thrombophilia which they can't do at the moment because of the medication. I'm scared if they take me off the anticoagulants I will have another clot. Does anyone have any advice or has anyone had a similar experience? I work in the medical field myself but this has really frightened me.

22 Replies

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  • Hi I have sticky blood (hughes syndrome, Antiphospholipid syndrome ) all the same syndrome thyroid problems can also be associated with it.

    You can get tested for this while on Warfarin not sure about dalteparin.

    I would Go by what the experts tell you hospital haematologists should know more about this

    If you take a look at the sticky blood site on here or the Hughes foundation web site it will give you more information

  • Thank you so much for your reply. I am seeing a hematologist next week so will ask about it. I wonder if it is hereditary as my grandmother told me she had sticky blood and took aspirin. Thank you again.

  • I have the same history, DVT and PE in 2004. Docs determined I have a hereditary condition called Leiden Factor 5. Having this factor in my genes results in me having greater chance of a clot and having had one already, the odds increase to have another. Every Doc and specialist I have seen since then agrees I need to be on anticoagulants for life. I would suggest to your GP that the tests for Leiden Factor 5 is a critical factor you need prior to making any decision to go off anticoagulants.

  • Thank you for your reply. I am seeing a hematologist next week so hopefully will be able to have some screening. Do you mind me asking what anticoagulant you take and if you have had any further clots.

  • I take coumadin (warfarin). I did have a 2ed clot two years ago but it was superficial, not a DVT, was not subject to breaking up and causing a PE, and it turned out at the hospital that my INR was below 2.0, the lower threshold. Also I had driven for two hours the day before and had not worn compression hose, which I usually wear anytime I am in a car more than an hour or so at a time.

  • Thank you. It's reassuring to hear how people are managing after a PE, still frightening though. Good luck for the future.

  • Hi. Sorry to hear about your PE. Alas I experienced a multiple bilateral PE two years ago, also unprovoked. Initially I was on warfarin for 6 months and then they took me off it to do a thrombopilia screen to try and ascertain the cause. Everything came back negative and I was also referred to a rheumatologist, cardiologist and had the various scans and checks for malignancy as a cause. Nothing ever found so based on my age (I was 43 at the time) and the fact I'm a Mum, my haematologist and GP both supported the decision to remain on anticoagulants for life as my risk of another PE was higher than the risks from anticoagulants. The haematologist said that the fact my results were negative didn't mean I don't have a blood disorder as clearly something is wrong to have caused it but merely that they don't yet have a test to screen for whatever my disorder is.

    I started taking rivaroxaban last February. Warfarin was not good for me as couldn't stay within the therapeutic range so constantly in and out of hospital. :-/

    Fast forward two and half years and I have since been diagnosed with cancer. So maybe that was my cause.

    Either way, risk of PE not worth it was what I decided.

    Good luck.

  • Hi, so sorry to hear that, do you mind me asking what type of cancer and did you have warnings or just DVT. I understand if you would rather not answer. Having been told it could be cancer I have been in a right state, I suffer with a lot of stomach problems and have convinced myself I have pancreatic cancer as this is the one related to DVT. I have insisted on some tests as none were performed at the time as HRT was given as the POSSIBLE cause. I am having a body scan next week so will be put out of my misery for the time being soon. I wish GP's would think before they make statements "it probably cancer". I am on Apixiban for another month or so. Take care and all the best with any treatments you may be having.

  • Hi Tareena

    I had a bilateral multiple PE without any warning or risk factors.

    After I had various screenings as cancer was a possible cause as is rhe case for any unprovoked VTE event but the stats are with you. There are far more likely causes.

    I had an urgent pelvic abdominal ct scan and mammogram within a couple of weeks of my PE and all was clear at the time. That was in October 2014. By April this year I had somehow got a 2.5cm tumour in my (former) right breast and a diagnosis of invasive ductal carcinoma (breast cancer). I don't know how this is possible but the doctors are all pretty sure the cancer would have been in my system ie active already at the time of my PE. I guess the tumour was still too small to show on the mammogram they did. I need to ask them questions about all of that as it's a worry for the future but at the moment have bigger fish to fry. Just got out of hospital after a mastectomy and sentinel lymph node biopsy, results next Wednesday and will know more about next treatment, stage, prognosis, etc.

    Your gp's comment is indeed extremely unhelpful, insensitive and quite frankly inaccurate. It's far more likely not to be pancreatic cancer or any other type of cancer for that matter. I know how worried you are right now so it's futile for me to tell me you not to worry. Of course you will query. However, hold on to the fact that it is much more likely NOT to be cancer and you will hopefully have this confirmation very soon. What day is you scan?

    PS I just read this back and still can't believe that the person in my message is me. Argh. But I am still here!!!

  • Thank you so much for your reply, I am sending lots of hugs for a long and healthy future. My neighbour is 4 years post a mastectomy and full of life, so lefts hope all it good when you get your results.

    I had just had a breast screening before the DVT and nothing was found so that will not be repeated. I was not even offered the option of any scan, just told it was HRT, which is hard to accept when so many people are on it. Through sheer determination I saw the new GP at the surgery who agreed that the way I had been treated was unacceptable, especially as I was told it was a cellulitis and put on multiple antibiotics, only when I took myself off to A&E was a DVT discovered.

    My scan is next Tuesday, my 58th birthday the following Tuesday so hopefully will have some good news. Logically I know nothing is seriously wrong as I am not losing weight, there is no blood or pain where pancreatic pain should be, just the usual IBS and reflux pains which I also suffer with. I had also had a smear within the last year, again normal so hopefully I can get on with my life.

    My son goes to Uni in October and I need to be well and healthy for him. Anxiety causes so many problems, so once scan over whatever will be, will be, I intend to stop googling and worrying. Take care

  • Thank you for your reply. So sorry to hear you now have cancer. You have had a lot to contend with. I hope your treatment goes well.

  • Thanks Zola.

    I hope you get the screening done and proper support to make the right decision for you.

    I didn't for many months and was left alone with the responsibility of what to do. I too saw a cardiologist who said off the record she would definitely take them for life with no known cause. Perhaps your thrombophilia screening will show the cause and make it an "easier" decision. The haematologist and VTE review clinic consultant both sat firmly on the fence and told me the decision was mine (patient choice I believe was the term they like to use. Ha.) I felt totally unsupported, very frightened and completely unable to know what was the right decision knowing they rivaroxaban is also not without risk. However, after burying my head in the sand for a few months, I saw a different gp at my practice by chance about an unrelated matter who on looking at my notes enquired how I was getting on post PE etc. When I told him the position I had been left in, he was pretty horrified. Basically, he was the only doctor I saw who was prepared to get off the fence and tell me what to do. He actually said that he wouldn't let me leave until I understood that taking nothing was far more likely to kill have disastrous consequences than taking anticoagulants. I don't regret the decision and it has given me greater peace of mind that I am unlikely to have another PE because I take my meds like a good girl. It hasn't been without complications: I had severe bleeding around 3 months after starting it and was admitted to hospital as a result. However, they sorted it and things have settled with the help of a Mirena IUD emergency procedure under general anaesthetic. I still don't regret taking rivaroxaban. Another PE would probably kill me. The chance of a fatal bleed is far lower for me. Of course now I have a cancer diagnosis which most of the doctors I've seen since seem to feel is probably the cause of my PE as an active cancer causes sticky blood.

    The plot thickens somewhat by the fact that my my very active and healthy Mum (as was I) had an unprovoked PE in February and this year. My cancer diagnosis came in April. I suspect I will never find the cause of my PE but I do know I definitely can't afford another. I have a daughter and partner who need me and a life I want to carry on living for some time yet!

    It's obviously a very personal decision and it's essentially about risk assessment. I spoke to all sorts of people and read lots of research papers with prognosis and risk stats. In the end, as much as I was terrified initially of taking rivaroxaban, it is relatively hassle-free compared to warfarin INR checks but you obviously need to be aware of the risks e.g. no reversal agent (yet) if you have a bleed. However, for me that risk is still well below my risk of another PE if I take nothing.

    Do hope you get some answers and if you don't, keep pressing. It's your life and we only have one. Don't be fobbed off, ask questions, demand second opinions if necessary. My feeling was that our poor NHS is so stretched with such limited funding and resources that if you are happy to sent away without answers, they will be more than happy to let you go and actively encourage this. I was 43 when I had my thrombophilia screen and the reason was I begged for it (literally - the VTE review clinic consultant told me I was a "difficult patient" which I think meant I asked to be helped more than he wanted to!) and because I was under 45. He actually told me "we wouldn't be bothering to do this otherwise". Callous *sshole. And yes I made various complaints in the hope other patients don't have to face this kind of treatment whilst simultaneous trying to recover from a PE. Not helpful!

    Let us know how you get on. I hope you will have support and clarity to help you make the right decision for you.

  • Hello. I had a good consultation with a hematologist today who was very supportive and reassuring. I have been advised to have anticoagulants for the rest of my life and am having thrombophilia screening although I am told it will not be conclusive as some things cannot be tested for while taking Dalteparin. I understand the risks of bleeding but have been advised the risk of another clot outweighs this and I feel comfortable with the decision to take anticoagulants.

  • So glad to hear you had a good appointment with a supportive consultant. That was my take on it, too: you wouldn't choose to take anticoagulants forever but they are still less risky if you've had already unprovoked PE.

    Do you know what you will be taking yet?

  • Hi Zola, I had a DVT about 6 months ago, was told it could be cancer, but when I said I had started HRT 10 months earlier, was told it was that. I have been given no tests, or counselling about what happens next. Scared about the cancer link and feeling unable to really enjoy life until I know one way or the other have insisted my GP ordered scans, which he has done and I have a CT with contrast of abdomen and pelvic area next Tuesday. Have been having dreadful stomach pains due to IBS/Diverticular and sort of convinced myself I have pancreatic cancer. I wish that these doctors think before they make a comment about cancer and how distressing the word is. I have had lots of bloods, at my insistence and all clear, but again stupidly googling, which says you can have normal bloods and still have cancer. I will know one way of the other in the next couple of weeks, scared being on Apixiban but scared to come off. When are your tests?

  • Hello there. I have seen my hematologist today and had tests for thrombophilia screening, APLA, lupus etc so waiting for the results. I have been advised to take anticoagulants for the rest of my life. Personally I would rather take anticoagulants than risk another clot but obviously there are risks with that but I feel reassured and supported by my hematologist. I had a CT scan request refused by a radiologist, but it has been re- requested by gastroenterology so that pancreas and ovaries and uterus can be checked just in case of cancer. It's all so worrying. I wish you well.

  • Hi, yes it is so worrying, I did not realise just how many people have these unprovoked DVT's and hopefully we cannot all have cancer. Before my DVT I had the usual age related smear and breast screening and all were clear, so that is good. I have my CT scan of abdomen and pelvic area next Tuesday. I also had within last year an ultrasound which showed everything ok, but could not see pancreas, hence my fear of having pancreatic cancer. Logically, I have no blood, weight loss or even back pain so the chances hopefully are small. I just wish I had not said I was on HRT in A&E and would have had the tests in December instead of spending my life in limbo. Still not been referred to haematologist that is the next thing I will insist on. Do you have a date for your tests. Good luck and take care, we are both going to be fine.

  • I'm still waiting for date for CT scan of abdomen. My haematologist said that unprovoked emboli are surprisingly quite common and that they often don't find a cause. I hope nothing sinister is found for both of us. Good luck for Tuesday.

  • Yes hyperthyroid may cause a rapid, very rapid heart beat. Do you have an endocrinologist, if so give a call, you may need your thyroid meds adjusted if you are prescribed them.

  • Thyroid hormones have been checked and are OK, controlled by medication. Someone has since told me a rapid heart rate can be a classic sign of pulmonary embolism.

  • I have no personal experience with that so I can't say. Sorry

  • Hi, i was diagnosed with bilat pulmonary embolism in May and my only symptoms were rapid heartbeat, severe shortness of breath and then collapse. I was told the rapid heartbeat is a sign of PE.

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