Polycythemia Vera - Help getting Diagnosis

Here are results of recent panel for reference and context.

You need to demand an Erythropoietin test (EPO), if this protein is low you have PV, as I do.
If they haven't diagnosed you with PV what are they saying this is?
Before they treat PV, hemotacrit needs to be about 45. It takes time to get there, but you may need to have blood drawn more frequently to see the result.

How is your blood pressure when you go in or if you test at home? Blood pressure meds?
Are you taking low dose aspirin? Have you had a JAK2 mutation test? Bone marrow biopsy?
Spleen and liver size normal or enlarged?

You need to be your own advocate, but in the meantime get more active, cut the highly processed foods from your diet or at least reduce consumption, and stay positive as possible.

I was diagnosed with PV, after finding an enlarged spleen, bone marrow biopsy, blood numbers spiking and EPO test. Hematocrit is now in line and deciding path of treatment if any yet beyond phlebotomy.

Good luck and be well.

Are you by chance taking testosterone, either by injection or a topical preparation? Polycythemia (but not PV) is often secondary to exogenous testosterone treatments. Those who take testosterone tell me that their physicians often write their high labs off to secondary polycythemia and do not follow up with JAK2 tests, etc. Could that be the case here?

@brandonndre, I’m checking in. Did you see the helpful posts from @mpplus3 and @buckaroobanzai ? Have you considered a second opinion?

Hello...I recently saw my primary care physician for my regular checkup. She noted that my red blood cell counts have been slightly elevated each time they were drawn over the last 2 or 3 years. At first she thought that it could be due to my sleep apnea, but I regularly use CPAP so I don't think its that. She then asked if I have itchy patches on my body....I'm always itchy, usually on my arms, legs and scalp. I'm also almost always exhausted and often have joint pain in my ankles and shoulders. She mentioned that she was starting to get concerned about PV, and is having the lab look at my red blood cells from last week's blood draw under the microscope to determine if there are any abnormalities.

I'm not going to lie....many of the symptoms I have are on the list of PV symptoms. I'm not nervous. I'm just wondering what others have experienced and how long it took to get a PV diagnosis.

Hello, I was recently diagnosed with PV in January. Originally my PC saw my red cells increasing and also platelets, hematocrit and hemoglobin. They will require a JAK2 blood test to confirm. It’s very expensive and can take up to 3 weeks for results to come in. If that’s positive, they can diagnose you by that and your lab work. Some may push for bone biopsy, but most doctors say that is not necessary. Good luck!

I was frantically looking for answers for 2 years for my itching as my blood counts were good. Then my next physical , bam high red blood cells. Positive for Jak 2 and bone biopsy. All is under control except for the itching comes and goes. I do have shortness of breath and fatigue at times, but I go like a bunny and then listen to my body and take a ten minute rest. I take two baby aspirin a day and phlebotomy every 3-4 months. Im 74 and don’t plan on slowing down.

I'm 19 years old, male. I have noted my elevated Hb level since three years ago, at about 175. Recently I tested my EPO level, it was subnormal, < 1. But there is no mutation in my JAK2 gene and a series of driver gene. Bone marrow aspiration is not considered yet, what's the possibility of my diagnosis of polycythemia vera?

Welcome to Connect, @qbf This is one of those situations where it’s not good to speculate. PV (primary or secondary) or any blood condition can take some sleuthing to pinpoint the diagnosis. There can be several causes for elevated hemoglobin so your doctor is trying to rule out the most likely suspects before confirming the diagnosis.

The first step is generally testing for any genetic changes such as JAK2 mutation which can cause the overproduction of blood cells. Your test was negative for involvement which is good. So your doctor will look for an underlying condition. When the body senses a lack of oxygen it calls for the production of more red blood cells to increase the oxygen supply. This can be as simple as living in a higher altitude or having sleep apnea. But there are also a number of other health conditions which as heart, lung or kidney issues that can cause secondary PV.
From information I’ve read however, secondary PV generally has a high red blood count along with high EPO. Primary PV has a high red count and low EPO. Your EPO is very low from your results.

If you haven’t read these yet, here are two good articles with information about both PV and Secondary PV.
https://www.healthline.com/health/polycythemia-vera#diagnosis

Because changes in the bone marrow can also bring about conditions like polycythemia vera, at some point if there are no firm answers, it would not be a bad idea to push for a bone marrow biopsy. It gets a sample of tissue directly from the manufacturing site for your blood and can give your doctor a much better picture of your overall marrow health and its ability to produce healthy blood products.

Has your doctor discussed the next step to take? Do you have any symptoms associated with your high hgb?