Polycythemia unknown cause - Male 27y: Hello, I'm... - MPN Voice

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Polycythemia unknown cause - Male 27y

rejvvv profile image
2 Replies

Hello,

I'm 27 year old male from Slovenia and only recently after a check-up for work have been referred to a hematologist because my hematocrit and hemoglobin came back high at around 0.54% and hemoglobin 189. I drank some water for sure before test.

Hematologist ran bloods again and also JAK2(also exon 12) which was negative and I also had head MRI, EKG, heart ultrasound and abdomen ultrasound which all came back OK. He said no treatment and to see him in six months and his diagnosis was - some people just have higher numbers - but my GP is not convinced and is sending me to another hematologist but I have to wait a few months for my appointment.

My GP also mentioned that it might be a combination of maybe higher testosterone(didn't have tests, but I have very good muscle mass with no steroid abuse, am very hairy and also have very oily skin with severe cystic acne that required a lot of treatment in my late teens) and higher blood iron levels(latest test 40 micromol/L - with normal range up to 31 - but normal ferritin levels around 80-100ng/mL).

I have some of the test results at home so I'm attaching those, and as you can see 2 are from 12 to 13 years ago when I was around 14y old and going trough puberty. As far as I can see the RBC was starting to get to my today's level back then, which is around 5,5 to 5,90 10^12/L, but my hemoglobin was normal back than? Only MCH and MCV went up while RBC stayed basically the same and MCHC has always been high? I also see that my platelets have also always been on the low side if that matters.

HERE IS LINK TO HIGH RESOLUTION PICTURE: pasteboard.co/IvfEn0p.jpg

Thank you all in advance for any answers.

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rejvvv
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hunter5582 profile image
hunter5582

Not sure this really looks like typical Polycythemia. There are other types of MPNs. These conditions can be primary (essential) or secondary (caused by another medical condition). Some things like extended periods of time at high elevations can also affect HGB. Would recommend that you be sure to see an MPN specialist. Most hematologists so rarely see MPN patients that they really do not have the expertise to diagnose and treat the variations that these rare disorders can take. Hope you get this all sorted out ASAP.

cvita71 profile image
cvita71

Hello, I am from Zagreb, Croatia, have been diagnosed with PV for three years and have been taking HU. They also diagnosed me with elevated hemoglobin and hematocrit. I am also JAK2 positive.

When my venipuncture and Hu reduced my hematocrit to below 45%, I felt much better and felt the disease was under control, living normally and working with PV.

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