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

Scared out of my mind

Posted , 6 users are following.

jbom47
jbom47

Hey everyone I rrecently turned 22 and am scared to death of having Polycythemia. At a recent physical my GP said my RBC and HGB were slightly higher then normal. Everything else was in normal range with the system my hospital uses. The past 2 years these counts were higher then the normal . Here are the two results. I'll also include my other numbers from the past two years

2016 CBC

RBC: 6.12 (4.20-5.50 is there range)

HGB: 17.2 (17.0 is there high max)

Platelets:330

HCT: 49.0

WBC: 7.7

2017 CBC

RBC: 6.04 (4.20-5.50)

HGB 17.3 (17.0 mad)

Platelets:324

HCT:49.1

WBC:7.7

During my annual physical he mentioned polycythmia in passing and didn't seem overly concerned . Neither did I until I got home and Google search it and have been scared to death the past week. I'm so nervous it's not even funny . I have no symptoms as of yet and I feel great. He mentioned in 2018 I can do a JAX test and I can get a new lab done in spring this year

0 likes, 10 replies

10 Replies

  • kevin81762
    kevin81762 jbom47

    Posted

    Hey jbom... A lot of places have 18.0 as there max, and won't even investigate you for PV if your Hb is not 18.5 and above. Your numbers don't seem that far off from what mine have been for as long as I can remember (I have not been diagnosed with PV yet). You need to remember, there are a lot of things that can contribute to a higher RBC, Hb and Hct, with one being dehydration, or not enough water—which can cause an increase in red blood counts. Curious, were your lab tests done in the afternoon or morning? Also, why do you have to wait until 2018 for your jak2 test? For myself, my Hb has always hoovered around 16.8 to 17.3 and my Hct has always been around 48.0 to 50.0. It was only recently that it started to rise a little, which lead to a slew of additional tests, including the primary jak2 v617f test. Try not to stress to much about it, there are people on this board that have had this disease for 30 years, and are still going.  

    • jbom47
      jbom47 kevin81762

      Posted

      I got it done in the morning probably around 8 or so. I did have to fast for it and honestly I'm not a huge eater/drinker. They say 8 glasses of water or liquid a day and I have 1 bottle of soda a day, 1 glass of water a day , and 1 glass of milk a day so that's always been a struggle of mine. I do have a genetic condition and ever since a child getting blood work done for it one of my levels has always been elevated . I also get extreme nervousness easily

    • kevin81762
      kevin81762 jbom47

      Posted

      Hey jbom... May I suggest you try doing your blood work mid afternoon next time, say 2-2:30, I think you'll be surprised. You need to remember, your Hb is typically higher in the am... This is exactly what I have noticed with myself, high in the am, low in the afternoon. With my last blood test, my Hb was significantly normal, as was my Hct. Nevertheless, I'm still waiting for an appointment with a hematologist, (this June), as I want to make sure. One thing I have learned is that you have to be your own best advocate.    

  • leigh74005
    leigh74005 jbom47

    Posted

    Hey. I am in a similar situation as you. I had a doc tell me that my hb was high when I went to see him for a different reason. He said that 160 was the high end of the range and started to mention polycthemia. My docs range is 140-180. Like you, I went home and read about it and scared the life out of me. I read that 180 was the high end for a male and 160 was for a female. My hct is .46 so I am well in on that figure too. Just curious, are you male or female as 170 for female is a little high.
  • sverre35326
    sverre35326 jbom47

    Posted

    Dear Jbom.

    I think the reason why your GP didn't seem to worried, is that he knows that, even though it is better not to have PV, it will probably not influence your life too m uch.

    At the moment it seems that your blood values have remained stable the last year.  Something you should regard as a positive thing.

    Also, your blood values are perfect for an athlete.  So - maximize what your body gives you and find an aerobic sport that suits you.

    Best regards, Sverre

  • jbom47
    jbom47

    Posted

    I am male. Not sure if weight or height has influence on it but I'm 5'7" and in the bottom average weight for my height. Thanks for the help everyone. My biggest concern wasn't the polycythemia but more so the risk (as slight as it may be) of being MF or even CML or AML. I'm glad for my health right now and my values besides those two were all in the green. And even though those two were red luckily it's only barely up

  • harrishill1
    harrishill1 jbom47

    Posted

    Hi jbom47. If your GP thinks you could possibly have PV he should refer you to a hematologist. It is the Hematologist who will diagnose you. Do not wait a year to do this! He shd refer you right away. I was diagnosed five yrs ago, and the meds, Hydroxyurea are keeping my blood in control. We can lead a normal lifespan if treated. You shd insist your GP refer you to a Hematologist. It could be dangerous to wait. 

    harrishill

     

    • jbom47
      jbom47 harrishill1

      Posted

      I apparently need more blood work as two tests aren't sufficient enough for them to refer me to a hematologist . I'm getting my next blood drawn at the end of March which I will probably try and get the JAX test then too if he let's me push it up. I think he's waiting on the March results until he refers me

  • richard96620
    richard96620 jbom47

    Posted

    Hi Jbom,

    Yes, you need to ask your doctor to test for JAK2 mutation.

    If the test is negative, you have less to worry....Richard Law

     

    • jbom47
      jbom47 richard96620

      Posted

      I plan to get that done as soon as I get additional blood work in and am able to. I'm lucky to be stable wit counts and even dropped RBC without any treatment . If it's not poly or even if it is im glad such a community as this forum exists to help . PV is very manageable and can be survived for long long periods of time with medicines . The 10 year prognosis estimate worried me greatly as well as the risk as low and rare as it is for it to become AML or CML. I'm glad to know with proper treatment I can very well live a pretty normal life and become gray and old one day haha

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.