1. Community
  2. Blood & Immune System
  3. Polycythaemia Rubra Vera

Haemoglobin decreasing without treatment?

Posted , 3 users are following.

Cobh
Cobh

Has anyone found that their haemoglobin levels have gone down without treatment? Is this usual, or do the levels normally stay up and increase without treatment? They have been elevated since September, but haematologist requested extra tests and it appears that my levels have gone down from 18 to 15.8. I am still waiting for final diagnosis (waiting lists in Ireland are very long). Many thanks for any info'

Rowena

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    Hello Rowena,

    I have PV and find that the blood levels vary all the time for no real apparent reason. My meamotologist says that this is quite normal and only looks at longer trends with the blood results

    Regards

    Warwick

  • Guest
    Guest

    Posted

    Diagnosed with PV 2 years ago after pains in chest. GP sent for blood tests and found red cells high and blood thick - he said it was PV straight awy , how lucky to have a good GP. Sent to haematoligist who confirmed PV. JAK2 test negative, but this normal in 5% of people. Had venesection and felt brilliant as if they had given me something, just raring to go. Had to have another 2 a month later. Had another venesetion 3 months later, this was 12 months ago, even though haematologist said I would defenitively need on on last 2 visits, but red cell count had come down on its own. Haematologist doesn't know why. Due to go back September 2010. Just so tired all the time, red hands that tingle like nettle stings with out the pain. When I felt like tis before haematologist just said not cell count as ok, see GP, which I know have and had more blood tests - awaiting results. Only on aspirin - hope it stays that way. All the info on internet always says fatigue is a problem even if bloods. Sorry for being so long.

    Marc

  • gilliancole447@btinternet.com
    gilliancole447@btinternet.com

    Posted

    hi my husband as had prv for 14yrs he`s been ok just had blood letting but had to have a drip each time, when he saw his consultant she said he was in the spent phase so make hay while the sun shines he was told any body know about the spent phase please
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.