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

Confused, any advice please

Posted , 7 users are following.

vanessa31033
vanessa31033

Hi, found this website a few weeks ago after coming away from my doctors being told i have a increased HB 162 and PCV 51 which apprently has been elevated since 2012 when i joined the surgery) after going back and having another set of bloods and JAK2 test my doctor said that she would refer me to a haemotoligist. I have since had a letter from the hospital that although my HB and PCV are elevated that my JAK2 has come back normal that they feel that my Polycythemia is secondry and apparent and because i have suffered with high blood pressure (for no reason ) and i smoke about 10 cigarettes a day say they cant offer me any treatment so have bascially refused to see me. I have for a long while suffered with tiredness and bone and joint pain( diagnosed with Fibromyalgia)  itchy painful hands and feet when they get hot, i also have had other symptoms which would also fit with Polythcemia. I feel really stupid now after looking into this and feeling slightly concerned to be told they obviously arent interested.Any ideas`s should i put up and shut up and not bother or push a bit further .

Thank you in advance

0 likes, 18 replies

18 Replies

Prev
  • vanessa31033
    vanessa31033

    Posted

    Update ....... made a private appointment to see a haemotologist iv`e have had some more bloods and chest xray (Clear) and scans , these showed a low EPO and igG and that i have an issue with my kidneys currently waiting MRA scan and appointment with a kidney specialist. so currently my haemotologist thinks that PV is less likely but not ruled out yet.Had i just ignored the first decision by the NHS the issues would never of come to light which is slighlty worrying and shows dont always go with the first answer you get.
    • peter98873
      peter98873 vanessa31033

      Posted

      Hello Vanessa,

      Yes, the haematologist should be able to set you on the right road.  A kidney defect can have an effect  on a diagnosis of PV as can the liver and some other organs.  In my experience it does not pay to just let things go for they rarely go away by themselves.  Some years ago I was treated for severe kidney problems but I have no reason to believe that it had anything to do with the later diagnosis of PV.  Further, as a result of a routine medical check I was found to have a serious arterial defect that saw me quickly enter hospital for some very urgent surgery.  Had I ignored this I would most certainly have paid the final penalty.  Hope you do niot have PV, you are better off without it but make sure you get any other ailments treated.  Good wishes.

      Peter.

Back to top
Prev

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.