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Polycythaemia symptoms and the waiting game

Posted , 8 users are following.

Charhorn85
Charhorn85

I have been back and forth to my doctors- having seen 3 different doctors due to appointment and work restrictions. I have had night sweats, itching legs in the bath only, extreme tiredness, burning sensation in my tongue, red blood spots appearing on my hands and neck, a frog in my throat for over a month as well as high RBC and WBC and Hem levels. Also very low Vit D levels. Doctors have repeated blood tests now 3 times but no referral yet! Is this standard for pre-diagnosis ?

0 likes, 13 replies

13 Replies

  • nandrews
    nandrews Charhorn85

    Posted

    In Engand, I would suggest you would ahve been referred. Though I am not sure on which of those symptoms would be the reason. But overall you seem to have too many symptoms to be explained as 'normal'. What do your various doctors say?

    Nigel

    • Charhorn85
      Charhorn85 nandrews

      Posted

      Each doctor has said....... Let's do more bloods in two weeks time. I am concerned as none of the doctors have asked about family history. I have had 3 members on my dad's side who have all died suddenly of blood clots and have 4 members on my mums side who have had or still has COPD!
  • harrishill1
    harrishill1 Charhorn85

    Posted

    Hi Charhorn. If you have high blood count, you should be immediately referred to a Hematologist. He is the one who can diagnose the problem. I had those exact symproms and was diagnosed with Polycythemia Vera. I was diagnosed 3 yrs ago, and feel much better since being on Hydroxyurea. For a while, I was treated with a blood draw. Then I was put on Hydroxyurea. I am able to walk n hour a day, work out at cur ves an hour a day besides, do yard work, etc. I do usually nap in the afternoon, but not always. We can lead a normal life, but do need to be diagnosed.   
    • Charhorn85
      Charhorn85 harrishill1

      Posted

      It's really becoming unbearable! My migraines are becoming more frequent and prescription medication is no longer helping. As soon as a headache come over me I get instantly tired and need a nap but this is not possible due to work so it just get worse. I know my doctor has said that if any symptoms persist or get worse I should go back but with my next lot of bloods due to be drawn next week I'm not sure whether to just wait for the results and mention it then or go back sooner! I'm worried that my doctor will think I'm making a fuss over nothing and dismiss my concerns. I know it's their job to listen and take everything on board but we all know what they can be like.
  • nandrews
    nandrews Charhorn85

    Posted

    It seems that not one of your doctors is prepared to make the move and get you a specialists opinion. Maybe you need to put your foot down and say that one bad result should be enough and what do they expect from another test?

    It maybe limits on funds and they are trying to ration their referrals. But that's not your problem. So be a bit forceful, not rude, but make your feelings clear, the results are not good and that is reason enough for you to be referred.

    Good luck

    Nigel

  • nandrews
    nandrews Charhorn85

    Posted

    If it were me, I would go and see them as soon as I could get an appointment.

    Think about it, if you delay he is more likely to believe the problem isn't much to worry about. If you press for an early appointment then it will be because you need to!

    Nigel

  • Charhorn85
    Charhorn85

    Posted

    So last results I got back showed neutrophilia and stomatocytes. High hb and RBC. WBC is still high but has dipped a bit. Have had more bloods done with a follow up on Monday morning. All these blood tests and still the doctors are saying nothing??????? It's hard enough being exhausted but frustrated at the same time is getting too much!
  • nandrews
    nandrews Charhorn85

    Posted

    Maybe if you think they have done enough tests then maybe you should ask the doctors what they think the results indicate.

    Nigel

  • harrishill1
    harrishill1 Charhorn85

    Posted

    Hi Charhorn. If you have high red and white counts, ask to be referred to a Hematologist/oncologist. He will be able to diagnose the problem, which sounds exactly like Polycythemia Vera which I have. It is extremely important to be diagnosed, so you can be treated. Insist if you have to!
  • samantha32002
    samantha32002 Charhorn85

    Posted

    Hi charhorn, when you have been referred and diagnosed please go to your check ups regularly. As I'm 23 with polycythemia vera , a am currently in hospital with a blood clot in my lung. This is due to me not respecting my health and going to regular check ups. And make sure you push them to refer you as well as this condition is horrible. Thinking I just have a bruised chest along with shallow breathing ended up a clot.
    • Charhorn85
      Charhorn85 samantha32002

      Posted

      Hi Samantha sorry to hear that you are in hospital. What where your symptoms for your blood clot? How long did it take to get you diagnosed with PVR???
    • samantha32002
      samantha32002 Charhorn85

      Posted

      It's ok , it's one of those things smile. And my symptoms are lose of breath, pressure and pain in the chest. Usually you would get swelling around the body but that didn't happen to me. I got diagnosed when I was 21 just through a routine check up as I kept passing out all the time and had pain on my left side. They referred me within 2 weeks and they diagnosed me very quickly.
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