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My doctor just referred me to an oncologist for "acquired polycythemia" Naturally I've been trying to read up on it bevofore my appointment in 2 weeks. I can't believe that I would have such a rare disease. Other than increasing fatigue the last 12-18 months I am mostly in good health I'm a little overweight by maybe 30 pounds. I had a stress test a year ago and my heart is good. I don't smoke. I drink in moderation. I did have an episode of gout in one toe last year. But it's cleared up. My biggest complaint is how tired I am. I can't even explain it. Feels like my whole insides just no longer have any energy. I really have to push myself some days. My labs have been elevated for several years. Here are my most recent tests results. I just want to feel good again. I feel like it's all in my head. 
HEMATOCRIT 37.0 - 47.0 %
7/13/15 - 48.8H
2/13/17 - 48.8 H
5/9/17 - 50.4 H
HEMOGLOBIN 12.0 - 16.0 g/dL
7/13/15 - 16.4 H
2/13/17 - 16.6 H
5/9/17 - 17.0 H
RBC 4.20 - 5.40 10*12/L
7/13/15 - 5.48 H
2/13/17 -5.60 H
5/9/17 - 5.77 H
RDW 11.0 - 15.0 %
7/13/15 - 12.4
2/13/17 -14.2
5/9/17 - 14.3
PLATELET COUNT 150 - 450 10*9/L
7/13/15 - 218
2/13/17 -225
5/9/17 - 247
RDW 11.0 - 15.0 %
7/13/15 - 12.4
2/13/17 -14.2
5/9/17 - 14.3
WBC 4.8 - 10.8 10*9/L
7/13/15 - 6.3
2/13/17 -4.5 L
5/9/17 - 9.2
0 likes, 28 replies
txmom4life
Posted
I don't have all my tests results back yet and don't see the oncologist until next week, but some of my results have posted on my online chart.
Abdominal ultrasound- no seen abnormalities
My RBC, hemoglobin, and hematocrit are all still high as they have been for 3+ years.
Iron - 96 (39-150)
Ferritin - 45 (8-252)
TIBC - 477 (241-421) H
Transferrin Saturation % - 20 (15-50)
From looking at my TIBC I think hemochromatosis will probably be ruled out?!?!
Does PVR affect your iron counts?
I hate the waiting game, but I am thankful for being able to see my lab tests online.
Have a good day!
Tammie
txmom4life
Posted
It's already been almost a month since i posted this. Time goes by quickly even for an impatient patient.
Well my JAK2 was negative. Still waiting on other labs. In the meantime I have a bone marrow biopsy scheduled for next Wednesday. Will follow up with my doctor July 5th for those results.
peter98873 txmom4life
Posted
Hi Tammie'
It's a slow process isn't it. Being cleared of JAK2 is step forward but you'll need to get the results for PV through before you can rest on your laurels.
As for the biopsy, if you are in any way concerned about this mention this beforehand to the doctor who completes the test. Usually one receives a pain-killing injection before the biopsy takes place. It may be a little uncomfortable but it should be painless. It is an important test for you and is needed by the doctors to clarify your results. It is quickly over. If you do not test positive for PV it is all for the best but obviously you do need to know what is causing your difficulties. Your iron counts should not pose any problem but with PV some things can and do go a bit haywire. Iron can be adjusted if necessary by the medics but ask the doctor if you are unsure as some patients have encountered increasing levels. I have never had a problem with iron. Best wishes.
Peter.
txmom4life peter98873
Posted
Thanks Peter. They are actually sedating me for the test. Which i am super happy about.
And yes it is a long process. I'm guessing if nothing shows in my bone marrow we will test for sleep apnea. I snore very little though and not often. I'm assuming for sleep apnea to be affecting your oxygen levels it would have to be pretty chronic. The only thing after that would possibly be a tumor?!?!
Is it possible for some people to just have high red blood counts in all three areas and not have any underlying conditions?!?!
peter98873 txmom4life
Posted
Thanks for your message. You are right that apnoea can be a serious matter but more generally it is not a big problem. It is caused by a restriction in the air channels when one sleeps. I have a family member who has gone through all the tests for this without difficulty. There was never a fault with the oxygen supply but one can never really rule anything out when it comes to body disorders. I would not speculate on what might be causing your symptoms it is something for the professionals to consider. It is the red blood cells that carry the oxygen around the body and these can be affected by various disorders relating to other organs involved in this process eg.lungs, kidneys etc. I would expect you to undergo further tests if your results are returned PV negative. See what your haematologist has in mind if PV is not your diagnosis. It is a disorder nobody really wants to have to deal with. Trust all is well with you.
Peter.
Cmbit txmom4life
Posted