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Post Pulmonary embolism symptoms

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carol50155
carol50155

I was diagnosed with PE in 2017 August, I've been on warfarin for 6 months then, I was put off it as the vq scans had, even 14 days after I've had the diagnostic scan my lungs were cleared of an clots. The PE was caused by contraception, so now every month when I go on my periods I get the same symptoms I had when I was diagnosed last year. I've had an MRI and ct scan and nothing was found, did another scan this year it was clear even the d-dimer bloods are always clear. My right leg swells and gets hot and sore but my gp said it can't be dvt and my lungs are clear. Does anyone still get the same pains...I feel like the pain from my leg goes to the lung and it gets sore

0 likes, 7 replies

7 Replies

  • Windy8000
    Windy8000 carol50155

    Posted

    Wow I’m not a Dr so I can’t be trusted. Did they see the Clot on a CT scan in 2017 when they put you on the warifren?   If so I would be a little hesitant to believe that 2 weeks later all is fine and dandy again. 

      My clot was found in Oct 1016 and I will be on thinners for life even though it’s gone. 

        I can’t help thinking if they actually saw a clot. Then took you off the thinner and you are still having symptoms. I’d get a second opinion from a different practice. Take the CT Scan with the clot on it with you. 

    • carol50155
      carol50155 Windy8000

      Posted

      Ct scan couldn't pick up where the clot was, the blood results (d-dimer)showed that there was a clot somewhere in my body. I did all sorts of scans, only when I did a vq scan (lung scan with profussion) then they say they tiny clots. I have gone for a second option to another physician this year after I was of warfsrin cause I was still getting the same symptoms, and all was cleared...ct scan and mri plus blood tests all came out clear.

  • moon53540
    moon53540 carol50155

    Posted

    I am a bit confused, were you on the warfarin for 6 months or 14 days?

    I got multiple PEs from the contraceptive pill, I am still being treated with Innohep, I am halfway through my course. Every month when I ovulate and every month just before my period, I have symptoms of breathing problems, palpitations and chest and armpit pain. You are the first person who I have come across who gets this too! I had symptoms for years before being diagnosed and I was told it was down to my polycystic ovaries! Do you have PCOS? I didn’t have a DVT though although the back of my knee was starting to ache. My clots have gone as well apparently. I thought the symptoms would get better after the 6 months.

    When your leg swells up, I would go to A&E, they will take you seriously as you have had a PE and you can have a full set of tests. They need to see you when your leg is swollen and hot. Did your PE cause any lasting damage to your lung or heart?

    • carol50155
      carol50155 moon53540

      Posted

      I was on warfarin for 6 months.... 14 days after I started treatment I went for a vq scan to check if the clots were clearing , and by God's grace they were gone but I still had to finish the 6 months treatment. I don't polycystic ovaries.

    • moon53540
      moon53540 carol50155

      Posted

      Have you had a scan for DVT? 

      Out of interest when you get your symptoms, do your lips and tongue go white? Because mine do and I wondered if anyone else had the same. I don’t know why it happens and was wondering if anyone could shed some light on it.

  • Windy8000
    Windy8000 carol50155

    Posted

    I had cystic overies and breasts, they didn’t call it that 40 years ago. Mine were so big in my breasts I had one removed and had a hysterectomy at 27. I was done having children so it was fine by me. That caused my cysts to shrink. Estrogen caused them to grow on my monthly boost. 

      My blood clot they aren’t sure but think it came from legs. 

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