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

Polycythemia question.

Posted , 3 users are following.

Tink.takumi
Tink.takumi

So my doctor has referred me to a hematologist. On the ref feral form she put polycythemia. My questions are what is it. I do know my issues started in November 2015 when they first noticed my hemoglobin was at a 15.7 but they thought it was from dehydration as it wasn't that high. 4 months later in March had rebuttal labs done and my kidney doctor noticed it went up again it was now at a 16.8. Fast forward to this week I finally remembered to talk to my primary doctor and she ordered another hemoglobin test plus a few others i didn't catch the name of. I just know they are supposed to help the hematologist. she has referred me to a hematologist but the hematology can't get me in till December. I'm wondering if I should try and find a different hematology clinic to see if they can get me in sooner.

So my questions are

1. What is polycythemia

2.should I beer concerned that the level went up by a whole point in just a couple of months.

3.should I find a hematology clinic that can get me in sooner. If my newest level is even higher.

Thank you for your help

0 likes, 5 replies

5 Replies

  • clem19079
    clem19079 Tink.takumi

    Posted

    There are 2 types of polycthemia, primary and secondary. Primary is genitic, while secondary is caused by smoking and drinking. It is a gene mutation that can cause blood cancer or cause enlarged spleen or maybe even strokes. Untreated it is dangerous. You will face a life time of treatment and it will take a while to bring your condition under control. But you have to keep your appointments. If your condition is making you feel particularly uncomfortable, you can contact your heamotology department and ask for an earlier referal. If you tell folks your symptoms as best as you can describe them they will advise you on how to hopefully deal with each 1. Don't panic about the word cancer, with treatment your condition can be controlled. I'm 60 and still here same as a lot of folk. It's a very rare condition so count yourself lucky it was discovered.

    • Tink.takumi
      Tink.takumi clem19079

      Posted

      I drink and smoke but all this came on suddenly in less then a year and I don't drink or smoke that much. Plus I also have a disorder called eds which deals with connective tissue so scared that on top of that that I may also have this

    • clem19079
      clem19079 Tink.takumi

      Posted

      Look at it this way, if you are being treated you are being closely monitored. You also have the benifit of having medical problems dealt with as soon as you get them. Would you not rather it was found and treated as opposed to finding you have something serious? I attend hospital every 6 wks and have got used to it. I know this can be distessful for you, but you are now in good hands. Once your consultant figures which strain you have you will be treated accordingly. Google polycthemia symptoms, you may recognise them. Folk on here can tell you what to ask your family doctor for according to your various symptoms. Ie if you suffer itching an your doctor to provide you a hayfever drug to ease the itching. I take 2 per day. There are a great many symptoms. Try not to stress over it stress only makes things worse. All the best
    • Tink.takumi
      Tink.takumi clem19079

      Posted

      Thanks for your help. And answering all my questions. I will probably have more after these test results come back which are for the epoxy thing and another genotype check and I think my doctor mentioned something else
    • clem19079
      clem19079 Tink.takumi

      Posted

      I just read up on eds, seems you have enough going on. You have my sympathy. Folk on here are great at giving advise. You may even get some advice in another part of this site that deals with eds. Time for bed all the best and don't think any questions you ask are daft questions. You won't know anything unless you ask. Bedtime for me . Take care

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.