Anyone off of blood thinners?

Chest and lungs
1

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

2

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

3

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.

4

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.

5

Hi

Was your initial P/E diagnosed as provoked ?

Regards

Steve

6

Hi

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

7

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.

8

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

9

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

10

Have you ever heard about Nattokinase?

11

No what is it?

12

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.

13

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.