High Normal Bloodwork but JAK2 positive. - MPN Voice

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High Normal Bloodwork but JAK2 positive.

Sklines profile image
5 Replies

My platelets were 500,000 about 3 hrs ago. GP sent me to hemo. Had all kinds of Bloodwork done which was normal. Hgb and Hct on high end of normal. Platelets went down to about 400,000 or less over 3 past years. Dr did Jak2 just to be sure it was not MPN. Turns out it came back positive at low allele (6%). At this point I have no firm diagnosis. They are leaning toward PV. Anyone else in same boat?

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Sklines profile image
Sklines
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5 Replies
AirconBob profile image
AirconBob

Though you don't give actual HB and HCT levels it sounds very similar to me around 18 months ago. I am not qualified to give an opinion, but should it turn out to be PV then it is not the end of the world - you have identified the problem which is treatable and does not need to affect your lifestyle or life expectancy. You must have problems to have got to this point, and once diagnosed, treatment will make you feel much better. Good Luck. B.

Sklines profile image
Sklines in reply toAirconBob

I posted HGB and HCT but I am not sure if it attached to your reply! Do you know have PV? Are your numbers similar to mine? I was thinking of going for 2nd opinion to a MPN specialist rather than just hemo.

Sklines profile image
Sklines

I meant 3 years ago not 3 hours ago! Typo.

mickey64 profile image
mickey64

Hello, I am going to ask you the same question? why did your Dr order a Jak2 test? did you have problems? I noticed you said 6% allele can you tell me what that means, I had 10% on mine, it did not say allele but I figure since you put it down you must know the meaning, I have asked and gotten no responses?. I did find some on-line where it said most people were in the 20 to 25% on the Jak2+ but still did not understand. I really thought it was just negative or positive until I did see mine said 10% on value. Thanks

Pkm52 profile image
Pkm52

I wouldn’t know this if my husband wasn’t a Sleep Apnea Specialist. Noisy breathers (a polite term for snoring) during sleep should mention it to their Healthcare Provider. Polycythemia Vera can be caused by Sleep Apnea. The body is so poorly oxygenated at night it responds by making more red blood cells in the struggle to get your brain some oxygen. It isn’t a MPN because it isn’t a neoplasm or malignancy. So if a home sleep test shows you stop breathing on and off throughout the night and your O2 level drops an oral appliance that moves the lower jaw forward - 3mm (to start) treats up to “severe” sleep apnea cases. Not everyone needs CPAP. Boom. So for all my fellow MPN patients with PV who snore consider the simple home test. If it isn’t a MPN and you treat the Apnea your Hematocrit should normalize. It makes sense that Sleep Apnea or snoring (people hate to admit they snore) would only aggravate a PV MPN. In the USA Sleep Apnea is the #1 cause of hypertension. That fact has been difficult to consistently find it’s way to clinicians. Good luck and sleep 💤 well.

Pkm52

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