Has anyone else got Polycythaemia?

I was diagnosed with Polycythaemia [too many red blood cells] over a year ago and have to go and have blood drained every 6 weeks. Caused by a lack of oxygen due to copd and bronchiectasis - the body tries to compensate by making more red bllod cells - and another reason for getting tired very easily.

I've not seen this mentioned anywhere and would like to know if anyone else has it or experienced it?

16 Replies

  • I have had raised haemoglobin (18), for the past year, I believe it is polycythemia but the gp does not seem too worried he just keeps saying we will have to keep an eye on it. What was you result?


  • I have polycythemia diagnosed in 2005, at first I had venesection evey few weeks once the levels were stable, I have blood test every 12 weeks & venesection if levels have become too high ( hct of over 50). I have emphesema which was diagnosed in 2008. I am on long term oxygen therapy. I recently had to have venesection for the first time for over a year.


  • Dx with emphysema in 2000, now severe, and I have polycythemia mildly and have 3-monthly blood tests. When it was first noticed I was eating a lot of liver which i love (you can get organic liver where i live for a song) maybe three times a week. I stopped eating it and my haemoglobin came down to 17 which is near the high end of normal. So far ive never needed venesection. Im not on O2 except for flying and during major exacerbations.

    Jo, Im not sure what "hct of over 50" means - is that haemoglobin of 50? Sounds very high.


  • Hi Jean,

    Hct stands for Hematocrit see link below


    Score not the same as haemoglobin it is more complex than that it is to do with packed cell volume. the link should make it more clear.


  • Oh cheers, Jo - i thought 50 was a bit crazy for haemoglobin! Thanks, I'll check the link.

  • Thank you also! jean

  • I was told lasts year that I had polycthemia.My consultant said if it goes above 18 my doctor has to inform her and she will arange for venesction.It was17.9 a few. Weeks ago.Ihate needles as well

  • A year or two before my copd diagnosis I asked my GP to do a complete blood count as I was convinced that 'something was up' with my health - I barely had the strength to dress or walk to my front door and I suspected Leukemia as my mother died of it. When my results came back my GP said that not only did I not have Leukemia or even aneamia, but quite the opposite - I had a high haematocrit count (hct / red blood cell count) He said that it was the equivalent to the high end of the normal range for a man (I am female and so should have had a lower count). The stupid man seemed to think this was a good thing! He suggested that I was either depressed, or spending too much time on the sofa and should get out and exercise! I went home and went through my medical books and read that a high hct was sometimes found in long term heavy smokers - I was a long term light smoker. I had passing thoughts that I really should stop smoking then put it to the back of my mind.

    A couple of years later - and a different GP - saw me diagnosed with copd at fev1 29%. I also had drops into the low 70's and once into the 60's on my pulse ox - I collapsed in the street. Obviously I was Hypoxic and after repeatedly telling my GP and resp. nurse of my own observations I was tested for oxygen and am now on LTOTT. At the time I was put on oxygen my hct was even higher and I was classed as having secondary polycythaemia due to hypoxemia. Luckily, since being on oxygen, my hct has come back down and I am just at the high end of the 'acceptable' range. I don't have any treatment for it - you could say the oxygen is my treatment. It is checked but only every year or so when I have a blood count done.

    While I wouldn't say polycytheamia is 'common' in copd, it is not 'rare' in those of us who have unknowingly been very hypoxemic for some length of time. If I remember rightly, Derrylynne had a high hct recognised just before he was put on oxygen. A temporary high hct can be caused by time spent at very high altitudes or even by ongoing serious dehydration. Our type of Polcythemia (caused by copd/ hypoxemia) is usually referred to as 'secondary'. That doesn't mean it is unimportant of course, as left uncorrected it can lead to heart problems etc.

    Hope your situation improves soon Paul, best wishes, Parvati

  • I was diagnosed with this and it was detected when my INR tests produced a blood sample that could not be read by the hand-held machines. They did full blood test and said it was 21. My doctor removed a pint of blood and it came back in high normal range. This happened again twice more, each time necessitating blood removal, but has disappeared since I was put on oxygen therapy in 2008.

  • I'm very surprised that your having venasections (unless you have already tried or are on oxygen ).

    I Was diagnosed with secondary polycythaemia (idiopathic polycythaemia) about 6 years ago. I don't have any copd though.

    Rather than spend ours writing about what it is, I thought you might find this link regarding MPD's (Mylo Prolifirative Disorder) interesting. (And its in plain English)


    If you have any questions after reading this I'll be glad to at least try and answer them.

  • Some may find the following link useful



  • Likes :-)

  • Venesection is the first line treatment for Secondary Polycythemia. I was diagnosed in 2005 did not get diagnosis of emphesema until 2008. My polycythemia had been kept under control by venesection at approximatly 18 month intervals whilst having 3 monthly blood tests to monitor levels.

    I did not go on to 02 until a bad exacebation in December 2009 Since then I have twice needed to have venesection.


  • Ouch! It has to be tough having Polycythaemia 'with' emphesema, even harder with having the extra venesections. As you say 'exacerbation' : That's an understatement!

    I hope i never offend anyone on here regarding what i say. I don't know everything about Polycythaemia (I often ask my wife; she's allmost got an idetic memory) and i especially don't know lots about emphesema, just a bit (My X Wife has it and my boys help with some rudimentary support [i think it's a lot more than that really])

    Anaemia is something to watch out for because (To the best of my knowledge) it causes your blood cells to 'produce' out of shape: this make it more difficult for your red blood cells to carry oxygen around your body.

    I think i might just complain a lot less about being an Idiopathic lol.

  • Hi, I hope you are all ok, I don't have COPD but I have just discovered that I have Polycythaemia .I went to my new dr in April and they did a full blood count and these were the abnormalities:

    Haemoglobin was 17.0 (11.5-16)

    Packed cell volume 0.51 (0.37-0.47)

    Basophils 0.11 10*9/L (<0.1)

    On the top of the lab form it said make an appointment to see dr, need to repeat test.

    Had another test a week later and these were the results :

    Haemoglobin 15.5

    Packed cell volume 0.47

    Basophils 0.04

    so all came back within normal range, but on the top of the form it said Polycythaemia.

    I had an idea that it was this. I have only just got these blood results back as I had to have more bloods done at the beginning of this week.

    I went to see my dr in May and Polycythaemia was not mentioned at all, she just said all results came back normal, I don't feel they are addressing this issue, I don't even know whether it is due to smoking or a mutation of my bone marrow. I am going to make an appt to see the dr next week to see what they say, either way this is a serious illness that can cause blood clots etc and my mum died of a blood clot when she was 49, some times I wonder what the dr's are playing at, anyway it would be great to chat to other sufferers.

  • I have just come out of hospital after ten days of tests and treatment, draining blood away because the haemoglobin was to high, draining off lots of body fluids, now on oxygen 18 hours a day, and changed all my medication around. got to go back in soon to be checked over again.

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