Just been diagnosed with this condition on a mild basis along with some other blood disorders. The hospital did not want to give any appointment as they told the doctor it was due to smoking. I have given up now. This week I have felt so tired and have no energy. Is this normal to feel like this. My liver, kidneys and lungs are all ok but my doctor still wants me to have a chest and kidney x ray.

Can anyone give me any further advice on what to do and do I need to feel so alarmed with this condition.

21 Replies

  • Polycythaemia is an increase in the number of red blood cells but there are numerous reasons why this could have happened, some more serious than others. Your doctor would be the best person to talk to for accurate information.

  • Yes she referred me to the hospital they wont see me and told her it was smoking thats it. she told me to give up

  • That is good advice. Smoking lowers oxygen levels and low oxygen levels can cause polycythaemia. You may also want to read Parvati's comment on here (her name is at the end):


  • I would ask your doctor to check your serum levals

    Vitamin D & B12 stuff

    I would ad just to blame smoking is a cheak really given all

    Pollutant's in enviroment.

  • Hi I find that rather strange they blamed smoking , my late husband never smoked and had polycythemia he had to have a pint of blood taken every so often never had to have any other form of treatment

    Take care


  • Hello magmar and welcome.

    I am sorry that you seem to be being denied treatment by your hospital and lack of care from your GP. May I ask if you are still smoking?

    I believe doctors are still ethically obliged to treat patients even if they don't agree with their lifestyle. (So far) The treatment may be dependent on the patient making an effort to improve their health choices, but should still be offered.

    As Tocl says, there are other causes of polycythaemia.

    Tee X

  • Hi I didn't think they were allowed to refuse treatment on those grounds. After all a lot of people smoke and don't become ill. Are they going to refuse treatments for those who are overweight, don't have a brilliant diet, don't exercise enough etc? There wouldn't be many people who would 'deserve' treatment under those circumstances! x

  • Or people who endanger themselves by mountain climbing, riding, playing rugby...etc, etc?!

  • Or speeding drivers, or people who don't look before they cross the road, or cyclists without lights, people who do diy when they don't know what they are doing or people who dare to venture out the front door and do anything.

    You could come up with a reason not to treat anyone !!

    Not just the people who partake in lighting up a fag, having a drink or eating to many cakes, all legal..but heath damaging life choices.

    Rant over


  • Hear, hear! Well said velvet!

    Tee x

  • Hi Tee

    I get sick of doctors rolling out the same bloody reason for our COPD...many people gave up the fags years ago...l know it's a progressive illness, and that may be the root cause, for some of us , but just breathing in the polluted air that surrounds us every second is a major cause of progression,

    I feel like telling the medics yes l packed in the fags, now what do you want me to do...stop breathing !!

    We all deserve to be treated the same, not lectured by some pompous consultant who talks to you like a naughty child.

    I am a grown up,..I have letters after my name, but l don't use them and l don't wish to be treated like some Demi God !!

    I am ranting again !!

    Message to self...calm down Velvet, think of your heart !!


  • Would you like a hand down from the soapbox, m'dear??! You'll do yourself a mischief! And I totally agree...some are still castigated 40 years after giving up!

    Tee xx

  • Hi Tee

    I will keep the soapbox for now, once l get a good rant on it takes me a while to calm down😂😂


    Donald Trump has just come to mind...l am getting down immediately !!!😂😂😂😂


  • Good on you velvet ! Let it out ! A good old rant`s very beneficial, Sheila xx

  • Ditto Velvet x

  • Exactly Tee x

  • Hello I just noted that if you put your finger on 'polycythamia' under your post, lots of other posts concerning it comes up.Sorry I can't advise, huff xx

  • I didn't know you could do that...that's what they're for!! Thanks huffer.

    Tee x

  • nhs.uk/Conditions/Polymyalg... hi magmar, I have a friend whos had polymyalgeia 10 yrs and still has , its white blood cells and the reason for the kidey check is , it effects the kidneys, the xray could be to see if you have any copd as well, as for smoking being the cause no its not, its rheumatic , the meds prescribed for her for 10 yrs , afrer 10 yrs was rushed in I,d u, for 8 weeks and needed weening of them, she herself is a x smoker but as copd 2nd stage which up to nowis stable , the polymyalgia as been the problem, you could be sent for a bone density scan as it effects the bones as well, but shes home and doing good now ,, shes now free of the steroids predsilone hope this helps .

  • Primary polycythaemia is a condition in its own right - as Toci says, too many blood cells. Secondary is the result of having another condition such as copd, when the body tries to compensate for low oxygen by creating more red blood cells which are the ones that carry O2 round. I have this and it's very mild. I am meant to go for a blood test every 3 months to keep an eye on it (but often forget - this has reminded me :) ).

    I've no idea how your polycythaemia connects to your other blood conditions, and you say your lungs are "ok" but I would have thought that you should at least be able to have the 3 month check that I get to monitor your haemocrit levels (or haemoglobin, I forget the distinction, both to do with iron levels).

    Jeff's suggestions above re Vit B12 and Vit D3 are good ones too - deficiencies in these can cause exhaustion.

    Also - my GP didn't credit this - I told her when the polycythaemia was diagnosed that i could probably get it down through stopping eating liver and kidneys, very high in iron. I used to eat them a couple of times a week. When i stopped, the next blood test was just above the normal range. It had come down quite a lot.

    Good luck, let us know how you go. :)

    Edit: sorry, phone just rang and I forgot to say, since you asked, I don't think you need to worry too much, and it seems from what you say that your GP thinks the same. Just try to get the regular monitoring.

  • I had a blood test after being diagnosed with COPD Polycythaemia showed up then but didn't find out I had it till 8 years later when they did a referral to the pain clinic and it was on the letter. It was put down to smoking and that GP was about as much use as a ash tray on a motor bike I have never had any treatment but yes I do have high blood pressure and many symptoms still like itching after a shower red skin to name a few

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