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Anyone off of blood thinners?

Posted , 5 users are following.

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Has anyone come off of blood thinners and are paranoid of getting another one?

0 likes, 12 replies

12 Replies

  • stevewilliams75
    stevewilliams75 Sway

    Posted

    Hi

    I've been off blood thinners since the end of April this year after suffering a massive provoked P/E on July 30th 2016 , i to was nervous but after numerous anxiety attacks and trips back to doctors etc they assured me that they only take you off them if they are 100% sure that there is not going to be a repeat , I am only just getting over the health anxiety i've been suffering with , but believe me you'll be fine , trust the medics they know what there doing , the worst is over you've had the PE, recovered with the medication , now it's time to move on and enjoy your life , all the best .

    Steve

    • SamP23
      SamP23 stevewilliams75

      Posted

      The doctors can never be 100% sure Steve. I was told I was very unlikely to have a reoccurenice of PE but sadly 4 months after ending my thinners I had them again.

      Not everyone is as unfortunate as I was but the medics really can't say it won happen.... I certainly wouldn't believe them if they promised me that!

      I just hope others who have come off thinners don't end up having them return and can get on with their lives.

    • stevewilliams75
      stevewilliams75 SamP23

      Posted

      Hi

      If your initial PE was not provoked then they should not have taken you off the thinners .

  • SamP23
    SamP23 Sway

    Posted

    Yes I was paranoid but I thought that the statistics were on my side. Lowest of the low risk levels according to my Haematologist Consultant so I came off the thinners after 6 months. I got on with my life and was beginning to feel better when I then started to feel unwell again.

    I went to my GP and had bloods taken again. Unfortunately my bi lateral PEs had returned and I am now on thinners for life.

    You should ask if you can stay on the thinners for you're own peace of mind.

    I'm so much happier now even though I have to take the thinners forever.

    • Sway
      Sway stevewilliams75

      Posted

      Thier not 100 sire bit i did kick a door several times and spent 8 days in a psych hospital. I was on thinners for 6 months. Came off in may and have been cleared 3 times by scans and ultra sounds.
    • SamP23
      SamP23 stevewilliams75

      Posted

      Hi Steve. ... I have no idea how I got my PEs however I had scana galore and the haematologist ran every blood test under te sun. They ran all the tests and took all my family history and said that i fell into the lowest of the low risk sector. They said that I had a chance that the PEs could come back within 5 years but when it came to coming off the thinners they said it was my choice whether I stayed on them for peace of mind or came off them. I opted to come off them which with hindsight was not the right thing to do. When they returned then consultant was so apologetic they had come back
  • canadagal
    canadagal Sway

    Posted

    With me I am on for live.  My hundreds were unprovoked and I am fortunate to be alive.  PEs are serious things.  My neighbour had blood clots 3 times from DVTs now he's on for life also

  • erika96170
    erika96170 Sway

    Posted

    Have you ever heard about Nattokinase?
  • Jessicax3
    Jessicax3 Sway

    Posted

    Omg.. yes the only conclusions they have come to is that my pe in august of 14 was atributed to my bc. I have developed extreme anxiety to the point of having to take depression medications and xanax. I have racked up thousands of dollars from going to the er everytime i get a twinge in my leg or a pain my chest. I took heparin for a year and xarelto for a year.. now that im off i am absolutely terrified that was the scariest thing i have ever been through in my life. I have a infarction (a peice of lung that is dead from know oxygen) my pe was severe ans im lucky to have survived idk how to get over it.

    • Sway
      Sway Jessicax3

      Posted

      I jist had another followup ct scan and visit and im fine. There not 100 % on how i got mine but i kicked a door like 20 times as hard as i could. Mine where small so i got lucky.
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