Polycythemia diagnosis

Posted by pianist3 @pianist3, Dec 24, 2023

Hi, everyone! I’m wondering if I have this polycythemia? I’ve had such weird symptoms starting with extreme fatigue, this past year I’ve had mold exposure, staph infections, fatty liver, UTI’s, yeast, gastritis, gerd, worry I have an ulcer, dizzy at times, tinnitus, Covid, a hysterectomy…it’s been a tough year, for sure. I have lost 40 lbs this last year and also dealt with low iron. But over the last say 5 years, my blood numbers have been creeping up or showing different things…and recently my red blood count is high, hematocrit high and some others were high too, I’ve also almost always had a high glucose blood reading, and just extreme fatigue. This last week, I’ve had increase pain in my left side, and am worried it’s my spleen, or kidney. I went to the urgent care, did a urine sample and they found abnormal leukocytes (which they’ve found the past 6 months), anyway I’m on Macrobid for a possible uti right now. But last night I felt so fatigued and worried, that I took one baby aspirin with a little bread, (although I’m worried about my stomach and possible ulcer), but I felt better for about two hours and got some more sleep. I’m truly at a loss and I’m scheduled for an endoscopy/colonoscopy in early January, but frankly I don’t think I have the energy and health for it. I’m guessing I need a hematologist, endocrinologist, general doctor and others to help me solve this, get the help I need. I’m not truly sure if I have this disease called polycythemia, but the more I read about it, the more it seemed to fit what I’m dealing with. The fatigue is so great, I almost can’t imagine going on much longer like this. I’m praying for answers, guidance and strength to make it through. I’m grateful for Christmas and the holidays, but it will be tough for me to get through them and also add delays to get a diagnosis and treatment. I’m wondering if I should go to the urgent care again today or ER? I’m also thinking I should do low carbs as well, and possibly not eat as much iron rich foods, although I’m trying to keep up my iron levels…oh boy this is all tough. Thanks for reading this and listening and any advice, ideas, suggestions, I would be so grateful! Blessings to you all for a wonderful merry Christmas 🎁🎄, Blessings! Thank you, Mia 🙏❤️‍🩹

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Welcome to Connect, @pianist3. Sometimes we need a nudge for guidance… I’m going to be that person, since you asked. ☺️
With your symptoms of unintended weight loss, extreme fatigue, and frequent illnesses you’ve been having this year, along with your sensing a decline in health today, I’d go with your gut feeling of heading to the ER today to get this checked out. Fatigue that extreme isn’t normal and needs to be evaluated, especially linked with the other symptoms.

With the holiday it’s better to have this done today. Will you please let me know what you find out?

REPLY

What does your blood work tell you ? My primary doctor diagnosed me and sent me to a Hemotologist.

REPLY

My polycythemia was diagnosed with a simple blood test.

REPLY
@pamdg

My polycythemia was diagnosed with a simple blood test.

Jump to this post

Thanks so much! Do you know what that test is called? Thx again and Merry Christmas!! 🎁🎄

**i actually went to get care yesterday and I’m on medicine for a kidney infection, not too fun. 🙏🙏❤️❤️🤶🤶

REPLY
@pianist3

Thanks so much! Do you know what that test is called? Thx again and Merry Christmas!! 🎁🎄

**i actually went to get care yesterday and I’m on medicine for a kidney infection, not too fun. 🙏🙏❤️❤️🤶🤶

Jump to this post

Similar to pamdg- the test doesn’t have a name that I am aware of - it’s red in the results of red blood cell counts and bone marrow among others….

REPLY
@pianist3

Thanks so much! Do you know what that test is called? Thx again and Merry Christmas!! 🎁🎄

**i actually went to get care yesterday and I’m on medicine for a kidney infection, not too fun. 🙏🙏❤️❤️🤶🤶

Jump to this post

CBC test

REPLY
@pianist3

Thanks so much! Do you know what that test is called? Thx again and Merry Christmas!! 🎁🎄

**i actually went to get care yesterday and I’m on medicine for a kidney infection, not too fun. 🙏🙏❤️❤️🤶🤶

Jump to this post

They can tell from your red and white cells, platelets and hematocrit . The name of the test to confirm is a JAK2 blood test. It’s very expensive and takes a few weeks to get back. If that’s positive they can confirm Pilycythemia Vera. Bone marrow is not needed although some choose to have it. Treatment will be the same either way and my oncologist hematologist said it’s really not needed. Some patients are in disbelief and need that final confirmation. Me, no.

REPLY

Basic diagnostic criteria: CBC, EPO, and JAK2. All blood tests.

REPLY
Please sign in or register to post a reply.