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PV male 38 years old?

Posted , 7 users are following.

leigh74005
leigh74005

Hi all. I am really hoping that I don't have this but here Is my story. I have been having abdominal pains for 6 months now. Had ultrasound, ct and Mri that all show nothing. I had a follow up appointment with my gastro doc on Thursday that I thought was to finalise things and be discharged. He said he was more interested in my blood work than my gastro symptoms. He said that my haemoglobin had bee steadily raising for the past 3 years and is now out of range. He said that 160g/l was the high end of the range and that mine was 167g/l. I had a copy of my recent blood work results with me that I had done in November and it said that 140-180 was the range. He said that he had never heard of the range being that high. He then went on to talk about polycthemia. He told me a little bit about it but didn't say what it actually is. Left me to go home and read about it. None the less it has scared the life out of me. I end to see my gp the next day to tell him what the gastro doc had said. My gp was shocked. He showed me all of my blood work results going back from 1998 and said that he must have it wrong. My haemoglobin has always been 160 or above but never above 180. My hct is .46. I phoned the hospital haemotoligy dept and got put through to one of the docs. I explained what the doc had said and she said not to worry about it. She said my levels were inside but boarder line but it is unlikely that there is anything wrong.

I do suffer from weakness and tiredness. I have put that down to the stress of the past 6 months constantly worrying.

Do you guys also think that the gastro doc has got it wrong? Also, any of you guys been diagnosed at a young age. What is the life expectancy of this if I do have it. Most sites I have read say it is 10-15 years and that it is mostly diagnosed in people aged 60 or above. Is that figure aimed at these people due to the fact that in 10-15 years from age 60, most people would die of other natural causes? Sorry for the long post, just freaked me out.

Thanks

0 likes, 17 replies

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  • angela_o..o
    angela_o..o leigh74005

    Posted

    Hello leigh,

    Firstly, welcome to our little group.

    I am sure that your gastroenterologist is an excellent doctor in his own field but polycythaemia is a disorder of the bone marrow - a long journey from the guts! What you need to ask your GP to do is to put you in touch with a haematologist, a specialist in blood disorders. A haematologist will be able to do tests and establish if there is anything wrong with your bone marrow rather than your stomach.

    In the meantime, if you do turn out to have polycythaemia it is not the end of the world so try not to panic about things that may not even happen.

    All the best.

  • Zapamania
    Zapamania leigh74005

    Posted

    Hi Leigh I wouldn't be too worriied about Pv if I were you.  In the Pv world they want the men's hematocrit to be 45 max.  You're only a point above.  You're right about 60 being the average number for a Pv dx but I've seen many people here much younger.  If I were you I would go to an oncologist or hematologist and have a full blood panel drawn including if you have the Jak2 mutation.  He would be much more qualified to give you a proper dx.  Good luck. Linda

  • Orseblue
    Orseblue leigh74005

    Posted

    As the others said, see a blood specialist doctor. PV is something you can live with for decades.

    My hg levels are in the 500 and my hematologist is only ordering venesections still, she said if it goes into the 600 range she wiill put me on the hydroxyurea tablets.

    Hope all goes well with you, please be assured PV is something you can live with for a very long time.

    I know someone that lived with another type of chronic leukimia and she lived to 101 years.

  • keith28441
    keith28441 leigh74005

    Posted

    Hello Leigh

    The blood level ranges vary from country to country and can also depend on where you live within that country. Where I am in the UK, Haemoglobin thresholds range from 130-170 and Haematocrit from 0.40% to 0.50%. Therefore 160 on HB and 0.46 on HCT would be within normal range. I am not a Doctor but your GP can refer you to a Haematologist if he/she believes your blood counts merit further investigation. With regards to life expectancy of Primary Polycythaemia, you will often read the words “median age of 10-15 years” on a number of web sites. Median survival is often misunderstood to mean the maximum expected lifespan. In fact,  it is the time at which one would expect half of a group of patients diagnosed with PRV at the same time to still be alive in part because it is generally diagnosed in people over the age of 60 (I am younger) and those people would have expected to have died from other or natural causes.  Most people live with this disease for many years, decades even and there are people on this forum that have had PRV for over 20+ years. High HB and HCT can be caused by many other secondary causes as well such as COPD, sleep apnoea, smoking, even severe dehydration and would you believe, living at high altitudes in addition to other medical conditions. You can take comfort in that both your GP and a medical professional  within your local hospital Haematology Department believes your blood levels to be in range. I do too but as mentioned, I am no Doctor, just giving you my personal thoughts. If you are concerned, then I would suggest you ask your GP to check your bloods from time to time in order that they can at least be monitored.

    Hope this helps.

    All the very best to you

    With kind regards

    Keith

  • leigh74005
    leigh74005

    Posted

    Thanks for replies. I'm in the uk (Liverpool). The lab that my gp uses in aintree hospital for haemoglobin is 140-180. I am well inside with that range. I think that the royal Liverpool hospital uses a different range. Had more bloods done on Friday by my gp so will wait until I get the results before I comply freak out. As mentioned, my gp thinks the gastro doc is mistaken as I have never been out of range on his records.

  • kevin81762
    kevin81762 leigh74005

    Posted

    Hi Leigh...  He said 16.0 is the high end of the range? Really? I've had an Hb that hoovers around 17.0 for as long as I can remember, and no Dr has ever told me that that was even remotely high. I also have twin brother, identical, who's numbers are the same. I would think your gastro dr has it very wrong.... but than again, I am not a dr... 

    • leigh74005
      leigh74005 kevin81762

      Posted

      Hi Kevin. So do you have polycthemia?kust curious because your haemoglobin level is the same as mine.
    • kevin81762
      kevin81762 leigh74005

      Posted

      I have not been diagnosed with PV, but was being investigated for it by a Dr Internist because of itching. My last Hb (16.2) and Hct (45.2) were quite normal. I am slated to see a hematologist (upon my request) in June of this year. I was told by the secretary of the hematologist that because I am not booked in until June, the hematologist does not consider me a priority, which I am taking as a good sign. I was jak2 v617f negative and my EPO was in the normal range when tested. I have twin brother, his Hb the last time was 17.3 and no dr has told him there's anything wrong with him. Not sure when you had blood drawn, but your Hb is typically higher in the am, and this is exactly what I have discovered with myself, as all my afternoon blood tests have been within the normal range. Hope that helps.     

    • leigh74005
      leigh74005 kevin81762

      Posted

      Hi Kevin. Thanks for getting back to me. As I mentioned. My doc is not in the slightest concerned. I too am itching all over but my bloods are in the normal range. Not got an appointment to see the haemotologist yet. My last bloods were done on the pm. Haemoglobin was 170 and hct was .46. As mentioned. My docs range is 140-180 haemoglobin and .42-.52 hct. I'm well in on both of them.

  • leigh74005
    leigh74005

    Posted

    Hi all. I went back to the docs today to get my blood test results. They were absolutely fine. As mentioned, the lab where my bloods go to uses a range from 140-180. My haemoglobin came back at 170 and hct .46. My doc is stumped at why the gastro doc has said what he did. He thinks he has made a mistake as I do. I even asked him if he would have any inclination to send me to a specialist based on where he saw. He said not in the slightest. Gonna put it to bed now until I see the haemotologist.

    Thanks for all your help people. In a polite way, I hope I never have to come on here again. Have a great xmas people. X

    • Zapamania
      Zapamania leigh74005

      Posted

      Hi Leigh well that's great news.  There's the best Christmas present you can have.  

    • leigh74005
      leigh74005 Zapamania

      Posted

      Thanks. My stress levels have gone through the roof because of this. I was already stressed enough. Need to learn some relaxation techniques I think.
  • richard96620
    richard96620 leigh74005

    Posted

    Hi Leigh,

    There are people who have Polycythemia Vera and live for more than 20 years, every case is different. I am not sure if you have done a full blood check, usually in the check that the  oncologist will look for  is mutation of JAK2V617F, if yours is negative, you have less to worry....Richard  

  • leigh74005
    leigh74005

    Posted

    Yes. I had a full blood check done on Friday. All results normal according to my doc. He is not in the least bit concerned about my figures. Haemoglobin was 170. His range is 140-180. Hct was .46. Think his ranges goes up to .52 so I'm well inside both ranges. As mentioned. I asked if he seen anything that would raise a suspicion for him to make a referral to a haemotologist. He said not in the slightest. I think the gastro doc I seen got it wrong and used the women's figures (120-160) He said that he had never known the range to be 140-180. A simple search google shows that to be the norm for men.

  • richard96620
    richard96620 leigh74005

    Posted

    Hi leigh,

    It is good news that you blood is normal. So the second opinion helps.

    In America, the Hemoglobin is measure with double digits, my in 15.3, and according to my oncologist, it is normal.....Richard Law

     

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