PE follow up

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Hi I got disagnoised up a PE back in November however I ended up back in hospital last weekend they thought it was another however they did not find another PE after speaking with doctor on the phone this week he said the following if you was 50 an this was your first clot then u could get a full body ct to check for cancer this has really been playing on my mind as I am constantly sick and feel it’s wrong that I will not get the best care due to my age (25) has anyone else had the same happen ? 

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  • Posted

    I felt the same way. I’m also 25 and doctors were quick to dismiss it because of my age and didn’t want to do further testing. What kind of sickness are you having?
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    • Posted

      I just never seen to be right one week I feel great other week I feel like crap no energy, constantly tired, I feel fluey a lot and have a sore throat majority of the days now. I was back in hospital last week I had flu symptoms and pain down my right side And back my heart was 130bpm and blood pressure was low and high temp some how they have said it’s muscle pain and send me home and I worry it could be more they did do another ct as they thought it maybe another PE but it was not. I feel like am constantly at the doctors and they take no notice I feel like I could sleep forever each week it’s something new. Did you get any more tests etc?
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    • Posted

      Have you had a full blood count test ? I'm wondering if you are low in iron, or your CK's are elevated causing you to feel this way ? Or deficient in something else. 

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    • Posted

      I have had my blood checked I am on folic acid and vitamin d my iron is ok what’s the other one am not sure If ive had a test for that 
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  • Posted

    Hi,

    ?Depending on the severity of the clot(s) you will feel like crap from anywhere from 6 months to 2 years and from some other sufferers , I have heard they still experience niggles 3-4 years after. For some according to patients and doctors, anxiety is the biggest side effect after suffering from a pulmonary embolism, which of course is natural our bodies have gone through a pretty traumatic event.

    ?I'm into my 50"s and I have never heard a doctor say "cancer"  from a clot or after. Cancer has been suggested to me, but only because I tested positive in a completely different test from a different set of symptoms, which by the way weren't many, if any.

    ?Perhaps you might like to get a second opinion, always good to have, especially if you aren't completely happy with your regular GP, just to put your mind at ease. But always remember go to emergency if you get chest pain, really short of breath.

    You say you have been constantly sick, as in what way ?

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    • Posted

      I then done some research and it seems there is so much out there linking cancer up. 

      I am tired none stop I feel fluey a lot of the days sore throats I am currently getting pain in my back and side around my kidney area each week they  is something new I feel like a broken record x

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    • Posted

      You aren't confusing cancer chemotherapy that is currently treating a cancer patient, that the chemotherapy may put them at risk of DVT's or pulmonary embolisms ?

      Also I "borrowed this from a site ........ "Women treated with tamoxifen to prevent or treat breast cancer are also at increased risk" of developing DVT's /PE's.

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    • Posted

      I had multiple PEs in both lungs nearly 5 years ago. A couple of scares which resulted in me being sent to A&E but no recurrence. Last July while in local town got severe chest pain, into jaw, given some water in a shop. Next food shop, M&S, same pain felt sick and faint so they called 999. Ambulance to hospital, they thought I had recurrence of PEs or heart attack! 24 hours in hospital, numerous blood tests, xray and scan determined neither! It could not be explained but symptoms apparently could have been either. A friend in the village had same symptoms and was sent to hospital 3 weeks before but no previous DVT or PE.

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    • Posted

      It is an interesting read, perhaps that's why my GP is screening me for different cancers,1 test down and negative, 3 more to go I believe. I was like graceCO I was diagnosed with multiple blood clots (PE's) in both lungs and DVT with in 40 minutes of presenting to emergency, I originally went in for my angina chest pain, they were more worried about my leg  than my chest pain this time.

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  • Posted

    I agree it’s been a year and half since my PE was found. I thought I had another several months ago because I started coughing again and was short of breath. The ER Dr wouldn’t take another CT scan said it wasn’t a heart attack and if it was another PE I was already being treated for one so he wouldn’t do anything different. I think IV had a DVT and happened to be at he Dr and asked her what she though this pain was she said oh it’s a vein. Like it was nothing. It lasted well over a month then I started getting the chest pains again I just told my boyfriend. If I die. Tell them I tried to get them to pay attention. BTW I’m 62. 

       Good luck. 

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    • Posted

      It’s terrible they look at you like there is nothing wrong even if this pain was muscle pain it still doesn’t explain why my heart was so high temp and blood pressure low they send me home with pain killers one being ibuprofen which can cause bleeding I worry they get it wrong. They was gonna send me home saying I had a viral infection at first until the found the PE. 

      What tests have you had done am thinking of writing a letter but don’t know who to address it too 

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    • Posted

      If you had a full blood count, then your CK's would of been done, so I dare say they were normal, see that and low iron can cause all of what you are experiencing, look up rhabdomyolysis?,does any of that fit with you ? If so, I'd start to think about going back to emergency, that is caused from extremely high CK's, but as I have said I'm sure that is included in your FBC, they believed I had this a few weeks ago, I disagree, I knew what it was, but the other specialists concerned disagreed with the emergency doctors first thoughts of it being heart related. If anything was wrong with your kidneys it would of shown up that something was a miss there as well, it would of told them if you had or are currently fighting an infection, don't quote me on this but I think if your white cells are up high and a few other markers, that would lead a doctor to then think about looking for cancer

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    • Posted

      If you are going down that route, I'm sure your hospital has a consumer liason / complaints department they will look into your concerns and will speak to all who treated you on that day, the other alternative is to the head of, in my case for my pulmonary embolism, my cardiologist took care of me for that. Yes so either head of cardiology , or Pulmonary, sorry I can't think of their specialist titles, that's where I'd be starting if writing a letter.

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  • Posted

    I can relate to a lot of what you’re saying. One week I’m fine, the next I’m very tired, having back pain and pressure in my chest. Maybe that’s just the process of working through the clots. It’s frustrating because no one can tell you for sure. It’s stressful. You’re not alone!
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