polycythemia.( too many red blood cells)

[sparkster]

Does anyone out there have this problem as part of their COPD side effects ?

GP not mutch help on the connections, and my local hospital seems incapable of getting the two departments to talk to each other about my case.

[Toci]

Red blood cells carry oxygen around the body. If we are short of oxygen our body tries to compensate by making more red blood cells. This may be true in your case.

[jojam]

Hi Sparkster, I have 'Acquired Polycythaemia' which is secondary to my COPD although my polycythaemia was diagnosed in 2003 but my COPD was not diagnosed until 2008/9 I had venesection to reduce my red blood cell count & have regular blood test every 12 weeks. I am under the care of a nurse led Polycythaemia clinic who monitor my results & call me in for venesection if levels a too high. I am on low dose aspirin & have been on long term oxygen therapy since December 2009 following a sever exacerbation of my COPD. I found that the different departments at my hospital also did not communicate with each other either, so much for 'Holistic' approach to patients care!

Best wishes

Jo

[pegbl]

Hi Sparkster,

Yes I have polycythemia, they told me it was caused by my COPD, last year over the weeks I had to have 3 pints of blood taken to help thin my blood.........I am checked every 6 months but my count has stayed good so I havn't needed any more vevesections (thank goodness something going right)

What Toci says earlier about the oxygen is just what they told me.

Pegxx

[O2Trees]

I have it too though its borderline and i haven't needed venesection. My count went way over when i was eating a lot of liver which i love. I told the GP i was sure the count would go down if i stopped doing this - she was dubious - but sure enough it did and is now maintained just on the upper border of normal. I have a blood test every three months. Toci's explanation above is exactly right.

[Maximom]

I have a high red blood cell count which my doctor just described as "unexplained" ! It now makes so much sense to link it to my COPD.... I can relax now, knowing it's related to a condition I already have rather than worry about something new to contend with...this site is so helpful......May have an extra glass of the red stuff tonight to celebrate......any excuse to imbibe..

[warwickstag]

I had polycythemia diagnosed in 2004. I'd been on warfarin since a PE in 2002 and the first sign of a problem was when the hand held tester for my monthly INR test could not read the blood sample. My doctor sent off a full blood sample for testing and the HB level was 21. I believe the normal reading is about 11. The doctor took out 2*500ml bags of blood and sent off the sample for retesting and it came back at 14. This solved it for a while but about every 6 months the INR test would fail calling for more blood letting. My doctor explained that the body detects low oxygen in your blood and compensates with the bone marrow regenerating extra red, oxygen carrying blood cells. It was not until 2009 when I was discharged from hospital with LTOT prescribed that the problem went away. I've not had any problems of this nature since.

Are you on Oxygen Therapy?. If not, this may be your problem. Good luck, hope this helps.

[frankie42]

I was diagnosed with polycythaemia in 2004. I was told, glibbly (and with some triumphalism) that it was caused by smoking. I insisted on a red cell mass test (not sure that they do these any longer because of the cuts?) and the results showed that I did not have too many red blood cells - it only appeared that way - my problem was that I was very short on plasma, due to either stress or dehydration. I did have two blood letting sessions (with iv fluids) to get my blood composition back to normal - and my yearly blood tests have been normal ever since. I drink lots of water now!

[onamission]

204 must of been the year for this I had a blood test and it came back I had to many red blood cells I wasn't told found out by accident got board waiting to go down to theatre for my spine block so sat and read my notes and it was then I found out so much for GPs

[rmfields]

I am told there are two types of Polycythemia; secondary, and Polycythemia vera that is a form of rare blood cancer that begins in the bone marrow. Polycythemia is mostly caused by low oxygen from COPD or smoking. You can have Polycythemia vera and not smoke or have COPD. The Doctor has to do a bone marrow biopsy to determine what kind of polycythemia you have although I believe treatment is about the same for both.

[sparkster]

Thank you, so much, for all your replies.There's a lot to think (and research) about there.

Our community here works... people talking to each other. Information is power.

GPs , sometimes because of time restraints, often because of ignorance don't have all the answers.

The only hope I have is that one day an ETHICAL drug company wil come up with a way to ease our suffering. Rather than some stop-gap measures they can make money on!

( sorry about the rant, but I get quiet angry about it sometimes)