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Polycythemia? I'm scared..

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Old 03-11-2011, 02:30 AM   #1
Join Date: Mar 2011
Location: Georgia
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Rawrz HB User
Polycythemia? I'm scared..

Lately i've been having the weirdest things going on with me.. My heart has been pounding really hard, my stomach moving with my heartbeat, blood pressure has been up a bit (not too high -- 146 / 88 was highest ive seen, although ive seen a 132 / 78 after that). I recently was at the doctor and they did a blood count test .. Hematocrit came back at 47%, Hemoglobin at 16. They said this was elevated, but not really really elevated.. The part that scares me the most about all of this is that lately my veins have become very visible, larger, more puffy, also new veins are appearing that i've never even seen before.. It's almost as if theres way too much blood in circulation and my body is just overloaded with blood. The elevated blood readings make me wonder if this could be Polycythemia?.. I'm only 20 so this would be strange for me from what i've read about it.. Has anyone else here experienced this disease? Did your veins change at all? (Become bigger / more visible?).. I'm sorry for the long post, i'm just really concerned about all this.. Any advice would be greatly appreciated.

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Old 03-11-2011, 03:44 AM   #2
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Join Date: Mar 2011
Location: USA
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lwill HB User
Re: Polycythemia? I'm scared..

Wow, your description fits my husbands veins to a T in the bottom half of his legs, ankles and feet. Do you notice any lumps also when they swell out? Didn't know there was a name for this, I was thinking it might be vericose veins. Also, along with this, my husband has a clotting disorder and has to be on coumadin for life. If not, he'll get bloodclots and die, like he almost has already, twice.

Old 03-18-2011, 02:10 PM   #3
Join Date: Feb 2009
Location: Manitoba, Canada
Posts: 64
femmedeviant HB User
Re: Polycythemia? I'm scared..

Hi! I was diagnosed with polycythemia 2 years ago, I was 22 at the time. It sounds like your hematocrit is a bit high, with polycythemia it gets elevated and the way it is lowered is through removal of blood, it's like donating blood (but they can't use it). I get blood removed (500ml) every month or 2 when my hematocrit gets to around 43-44%. When it gets that high I feel pretty sluggish and tired and have headaches, and having it removed makes me more energetic and no more headache. If you think you might have PV they can do a blood test for the JAK2 mutation, 95% of people with PV have the mutation. I have it too. They did a bone marrow biopsy on me to confirm things 100%. My heart rate is also elevated, usually around 95 resting, and blood pressure is low/normal. It sounds like you might benefit from looking into this a little further. I'm on coumadin for life too, and just had a healthy baby boy 6 months ago so this is something you can live pretty comfortably with as long as it is being managed properly. Good luck!

Last edited by femmedeviant; 03-18-2011 at 02:12 PM.

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