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Hematocrit improved, mystery continues

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john17871
john17871

Quick history, diagnosed with Polycythemia in early OCT of last year, diagnosed a couple months later as secondary. Started with HCT of 59%, last letting at 49% in mid-Nov, bringing it down to 42. Danced around between 41 and 44 until this week, where it's now 45.7. Only thing that changed was I stopped taking aspirin due to abdominal pain a few days before. Tested positive on hemocult samples, 2 out of 3, doctor thinks I may have been self-letting, bleeding internally, resulting in no need for letting. Wondering if Aspirin was causing the bleeding as the doc said to suddenly stop needing to give blood without finding a cause is "extraordinary". He did mention that it could have also been stress polycythemia, which has since passed. Having another ultrasound tomorrow, the first only found a fatty liver, which I believe has improved since I quit drinking (we'll find out tomorrow). ALT/AST was high at the time, but has since lowered to normal. Have been having gallbladder symptoms, but has not been confirmed (mainly pain/gas/family history). Am sort of concerned about a colon tumor, but doctor says those that cause PV are generally in the lungs or kidneys. So basically, what seemed like improvement maintaining a low HCT, may have pointed to something worse going on. I thought it was strange that I suddenly no longer needed to give blood. Only thing I can think of is that it was stress related, which has improved, or the aspirin (or something else) was causing bleeding, leading to no need for lettings. I stopped taking the aspirin, and my HCT started creeping up for the first time in months. Only other thing I can think of is that I started on a grapefruit diet, but slacked up on it over the past few weeks. Entire thing is certainly a mystery to me. If the US yields no results and the symptoms continue, he did mention a CT scan would be the next step. Note there is little family history of colon cancer. Mylanta sometimes relieves some of the abdominal issues. WBC count has been high, but within normal parameters. Had a period of swollen lymph nodes, but went away after about a month, which was assumed to be a viral infection. Dizziness has ended for the most part as of last month. Not knowing the cause is certainly stressful. Was relieved when JAK test came back negative, but now am concerned the cause of the polycythemia may actually be worse, and to think I could be bleeding internally while still having the condition doesn't help things any.

0 likes, 7 replies

7 Replies

  • angela_o..o
    angela_o..o john17871

    Posted

    Ahem....

    Have your stools changed in colour or texture?

    Not a very good topic for breakfast time!

  • frances20411
    frances20411 john17871

    Posted

    Truly sorry that you are having so many problems.  I have been taking Baby aspirinenteric which is coated and does not desolve in the stomach but in the intestines.

    I found if one stops eatting any foods high in Iron  e.g. red meats, spinach etc.

    that my HCT comes down.  I ck. all labels on package food to for iron content.

    My white count is always high since I have had PV so I pay no attention ...It does not mean I have an infection.....high white count is part of the disease...

    Drink a lot of water...Good luck

  • julia15874
    julia15874 john17871

    Posted

    Hi John, good to hear from you, polycythemia after reading so much about it, can present differently with everyone, I'm sorry that you may be bleeding internally tat would be very scary. In my experience it's been very strange, I know that your jak2-,I am too. But there's many other mutations that can course polycythemia not necessarily PV, that's blood cancer, polycythemia is not form of blood cancer but I think they still consider it a primary disease if it's a mutation that's to blame though but I don't think they call it PV unless it's Jak2 or JAK exon 12 but I may be wrong. My blood had been high for two years and out of the blue it dropped and my Heamotologist said polycythemia does not drop on its own, but he also said dizziness isn't a symptom, he told me just for us to watch my blood for a while as I was due to have a red cell mass test and a BMB,but these tests were delayed due to drop in heamoglobin and heamocrit (still over for a woman but not dangerously so) my heamocrit for me has never got below 47 and heamoglobin 15.5 at its highest 54 and 17.3. I've been reading like mad like I said and what's strange for me is my blood has started to rise again, my last blood test my heamoglobin and heamocrit as risen a lot a again this month, the only thing that's been different for me is exercising, while I exercise my blood rises and I have to stop as I get dizzy and my blood pressure rises and I get bad migraines and sometime I get auras too and when I don't exercise it drops, but when I mean I don't that literally doing nothing which is not living! I'm now thinking for me there's something wrong with my oxygen mutation gene, all my symptoms have returned, I'm going to carry on exercise as I've to have another blood test April if that's high I'm getting a second opinion. Please read all you can because I think if you smoked heamotologists easily brand that that's to blame, that could be correct but if you haven't had a BMB that can only conclusively say it's not a primary reason. Good luck with your results x

    • julia15874
      julia15874

      Posted

      Oh and John you can get pain in your stomach if your spleen swells just another theory, your heamocrit was very high to start with and that alone can effect your liver and spleen. I often get a night of agony in my stomach and It feels all swollen.
    • frances20411
      frances20411 julia15874

      Posted

      I understand that PV is a form of cancer... I do not know what you mean as excercise...I walk alot and that helps by HCT besides eliminating iron rich foods and drinking a lot of water.  I really do not understand your conditions that you describe.  I found just do NOT make PV too complicated...see a "good" onocologist..keep it simple.

      that works for me. 

    • julia15874
      julia15874 frances20411

      Posted

      Like I said I've been reading up like mad! PV is where the signal to tell your bone marrow to produce cells stays on the on button in the jak2 gene. The oxygen receptor gene basically there's a fault in distributing the oxygen out of your red blood cells into your muscles, what happens is your heamoglobin builds up in your red blood cells, your muscles cry out for oxygen and tells your kidneys, kidneys tell your bone marrow and you produce more red blood cells, but during exercise you naturally ask for more red blood cells to feed your organs and muscles more, your right exercise is good but if it's the oxygen receptor gene to blame it can make your condition worse! Rubbish isn't it? I'm hoping I don't have it Imsuch an active person x

    • julia15874
      julia15874

      Posted

      Frances you have a diagnosis, but when it's a mystery you have to be your own advocate, there's apparently about 20 genes now that can course it but it all depends on what your epo is too, it is complicated some of it takes a lot of absorbing, I want to go and see this next heamotologist with all my facts to help her hopefully to be able to give me a diagnosis. I hope your doing okay at the moment x

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