Thrombophilia

Hello everyone!

I've just joined the community. I was wondering if anyone else has Thrombophilia? I've recently been diagnosed with it and have been told that it explains my stroke when I was 23, DVT's and Pulmonary embolism.

I had my DVT and PE last November and had Clexane for a while and am now on Warfarin. My INR is very off whack and jumps from 1.6(ish) to 3.6+ and it's irritating me. Is this something that I can always expect to happen with Thrombophilia? The specialists aren't very organised and I'm chasing Thoracic and Haemotology every week it seems!

2 Replies

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  • Hi Katania

    Must admit to not knowing much about thrombophilia just googled it to find out a little.

    Most people here will be anti-coagulated, and yes for many of us our INR does jump up and down and the secret is a stable diet which is very hard, as like most people your diet changes with the seasons and with our whims.

    We had a fascinating talk at last year's conference on INR testing and this extremely knowledgable presenter told us that the test was only accurate to +/- 0.5 at best and that the methods of testing were literally somewhat subjective. He personally thought if he was on warfarin he would rather be in the low 3s than the low 2s and said that anything up to 4.5 was not really a problem. My last two tests were 3.1, then 1.8 so know what you mean about stability.

    Do you suffer from AF as well?

    Hope this helps

    Ian

  • Hello Bean and thanks for replying,

    I have paroxysmal AF and use to be on Propanalol for it but it seems to sort itself out. The biggest issue for me at the moment is my breathing, since the DVT caused me to have a pulmonary embolism I feel like I'm suffocating all the time. It's good to know that I'm not the only one that has a INR that never stays still! Heh.

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