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Silly question ??

Posted , 7 users are following.

jessie2150
jessie2150

Hello. This may seem a stupid question, but I'd appreciate opinions.

 If it seems apparent someone has polycythaemia is it usual for a general doctor to assume as the patient is an ex smoker therefore it is secondary and will be due to COPD and order tests to confirm COPD only.?

Are there any other smokers or ex smokers here who have been dx with secondary polycythemia without seeing a haemotologist?

As I'm speaking of probably(?) Secondary perhaps I'm here under false pretences anyway but I feel a bit dissatisfied with my docs attitude, so wondered if this is usual procedure?

Thanks to anyone who replies.

J 

 

0 likes, 13 replies

13 Replies

  • clem19079
    clem19079 jessie2150

    Posted

    A haemotologist makes the diagnoses, I was assumed to have secondary because I smoked and drank. It was only after I told my consultant that I had suffered these symptoms from childhood that she did more in depth tests. I know folk that have copd that dont have pv or prv. If you are diagnosed with either then sadly you belong in this group. There no such thing as a stupid question by the way.

    • jessie2150
      jessie2150 clem19079

      Posted

      Hi clem.  Thank you for replying.  I got the impression from my doctor that if you've smoked you've got copd and you are bound to have secondary polycythaemia.  It did seem strange to me, but difficult to query a doctor.  Your comment does help me have some confidence in my feelings about this, and I really appreciate you taking the time to reply. 

      j

       

  • Chippenham
    Chippenham jessie2150

    Posted

    Jessie - Get a second opinion.  My first hemotologist said I probably had Secondary PV due to sleep apnea (though I had never been diagnosed with sleep apnea), and it was only after the Jak-2 test came back positive that he said I had primary PV.  Even then, his recommendation was to come back in a year and he would run blood tests  again and check to see if my PV was getting worse.  At the time I could barely work, and so I didn't want to wait a year.  I did some reserach, found an expert in PV at Seattle Cancer Care Alliance a few hours form my home, and I asked my primary care doctor for a second opinion from the hemotologist I chose.  My hemotologist at SCCA immediately scheduled me for a phlebotomy and monthly blood tests, and I am very happy with him and now have my numbers under control.  Bottom line - get a second opinion in all cases.

    • jessie2150
      jessie2150 Chippenham

      Posted

      Hello Chippenham, and thank you so much for your reply.

      I haven't seen a haemotologist yet. Even though I did ask to be referred  my general doctor said polycythaemia  wasn't always considered a disease of the blood and my decades of high hgb/hct will be due to copd.

      I'd never heard of polycythaemia before and am so glad to have found this site and be able to hear about other people's circumstances, it's such a help.

      I'm not an assertive person so need information so I can have more confidence with my doctor.

      Thank you for taking the time to reply

      j.

  • suki8786
    suki8786 jessie2150

    Posted

    I'm new to this and don't know alot about PV but what is the difference between PV and COPD?

    • jessie2150
      jessie2150 suki8786

      Posted

      Hello suki. They are two completely different diseases.  All I've learnt is that Secondary polycythaemia is caused by an underlying condition, copd being one of several possible causes.

      PV or PRV is a primary disease.

      Sorry if my posts have been misleading, I am so far undiagnosed myself but seem to ask so many questions here.

      j

       

    • suki8786
      suki8786 jessie2150

      Posted

      No problem at all, I have PV and found out not long ago so new to all this aswell.
    • jessie2150
      jessie2150 suki8786

      Posted

      I am sorry to hear that suki.  

      You probably have lots of more pertinent questions for the great people here than the questions I ask, and you'll find helpful answers I'm sure.

      best wishes to you

      j

       

  • julia15874
    julia15874 jessie2150

    Posted

    Hi Jessie, did you get to see a haematologist? I feel for your frustration! I've asked for my blood results and since 2014 my bloods have been high apparently stating check again in three months, they have slowly risen in 18 months which is when my doctor decided to send me to a specialist, I saw him last Thursday, I'm now waiting for the JAK2 result, which can take three weeks, I know waiting causes all sorts of anxiety but my blood pressure is high, I feel awful, I couldn't do anything this weekend as I felt so tired, my specialist has said if I haven't got the JAK2 then there's nothing much more to be done as I look healthy, don't smoke so it can't be my lungs! I really don't want polycythaemia, however I'm frustrated if it's negative and I have to spend the rest of my life with high bloods and high blood pressure, are they waiting until I have a heart attack or stroke! Before they will do something, sure prevention is better than the cure. Jx

    • jessie2150
      jessie2150 julia15874

      Posted

      Hi julia.  No I've not seen a haemotologist even though I asked my doc for a referral.  Being sent for chest xray and spirometry instead!

      The waiting for results is awful for you, hope you get answers soon but  at least you are seeing a specialist now.

      I've pm'd you.

      j x

       

  • Rainbows_end
    Rainbows_end jessie2150

    Posted

    Hi Jessie 2150

    i am an ex-smoker stopped last time in 2000, I was tested by a heamotologist for problems and was found to carry the JAK2 gene, I do have slight problem with breathlessness, but it is caused by the polythemia 

    vera. I take Hydroxycarbamide 17 per week have done for the last 3 years.

    Hope this helps

    • jessie2150
      jessie2150 Rainbows_end

      Posted

      Hello Rainbows end (and what a lovely name).

      I am sorry to hear you have PVR with the JAK2 gene.  I hope the Hydroxycarbamide are working well for you without many side effects..

      I really appreciate you taking time to answer me, it is amazing how much knowledge there is on this forum and everyone is so willingly helpful.

      I have been reading a lot about polycythaemia and its many forms recently, and now I have learnt there is Primary, Secondary and Relative. 

      A complicated condition isn't it, and I clear that any diagnosis must be left to a specialist.  I hope to see a haemotologist some time.

      I hope you are doing OK.  Thanks again.

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