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  • Do I have Protein C deficiency?

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    Old 05-01-2004, 11:40 PM   #1
    kellie2
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    What is 'acquired' protein C deficiency?

    I was reading through some of these posts and came upon one that said there are two types of protein C deficiency - aquired protein C deficiency or hereditary protein C deficiency. Does anyone know what the acquired one is and how you would get this? I was under the impression that this particular disorder was strictly a genetic thing.
    I was diagnosed with this almost twenty years ago (I'm now 51) and have been on Coumadin for all this time, but have recently started seeing a new doctor who is concerned if I truly have this or was mis-diagnosed. Seems they did the test for this disorder while I was on coumadin, and from what I understand on here and also from my doctor, having the test while on coumadin can give a low protein result which is not accurate. He is also suspicious because nobody else in my family has this, both of my grown children don't have it, and I myself never had a problem until I was 32, with no symptoms of anything out of the ordinary before that and none since. My doctor says things just don't 'seem right' to him, that I more than likely got the clots in my lung because I was on birth control pills, I was smoking at the time, and I was over 30, as all three of those risk factors made me a prime target for clots, but says he finds it strange that I didn't have a problem with my blood before then. I've read some of these posts on here, and a good many of you with this disorder seem to still have problems with clots even after being on the blood thinner, and I have never had any problems at all, not even when my INR has dropped to the point of where I could get a clot. Now I read something about acquired deficiency and wonder, Is that the one I have, which would explain everyone else in the family being fine. My doctor wants to retest me but says I would need to go off the coumadin for 2-4 weeks so that the proteins can get back to a normal range and they can get an accurate test result. But he isn't comfortable taking me off of it for that long, and neither am I. He is going to speak with a hemotologist and hopefully be able to help me.
    Because so many of you are so knowledgeable about this, I would truly appreciate any suggestions or opinions that anyone can offer....and maybe someone can explain this 'acquired' form and how one would get it.

    Thank-you so much...

    Last edited by kellie2; 05-02-2004 at 10:30 PM.

     
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