JAK2 negative - advice welcome

Hello, I am new here. I am a 50 year old white female.

I was found to have high haemocrit as part of a routine full blood count. That was 4 years ago. JAK2 tests were negative so I was told it could not be PV. My erythropoetin (sp???) levels are only just within the low end of the normal range so was told it could not be an erythro producing tumour. I do not live at altitude (never have) and there is no family history of high iron levels. I don’t smoke or drink alcohol (never have).

I live in a rural part of Scotland so am quite isolated. I see a haematologist every three months and have a phlebotomy every month. Usually one unit but sometimes two or even three. My haemocrit is around 50% with this number of venesections. They would like it lower but that just hasn’t happened. My WBC is low and the reason is probably because of the amount of blood taken.

My liver seems normal on the scans. I had my spleen removed in 2002 as part of surgery for an adrenal tumour. The spleen was deformed, small and multi-nodular but the spleen tissue was fine on path examination.

I have never met anyone else with this.

Thanks for listening,


Hi there

Only just joined this group but diagnosed with polycthemia Nov 2007 after a mild stroke. My history very similar to yours raised Hb and HCt over 5.0. reg venesection neg Jak 2, but also no risk factors for primary type. They have just done test for Jak 2 exon 12. Was having phlebs 3 monthly but now down to 4-6 weekly as Hb and HCt starting to bounce back at faster rate. I am a 46 year old mum and midwife and live in Oxford UK. I have yet to meet anyone else with this condition and so pleased i have found this site.

I have read that not all PRV patients are Jak2 pos and i am also trying to find out more about it. Seeing consultant on May 1st so will ask for more info on this.

I understand…=20
Also, I have 2 brothers and 1 sister… and I’m the only who it is =
activated in…=20
From what I understand, after reading all that material, is that many, =
many of us have it… it just doesn’t activate in everyone… for some =
unexplained reason, shortly after birth, it activates in some people…=20
It is also my understanding that they (scientists) are getting closer =
to figuring it out…=20
=D7=A9=D7=9C=D7=95=D7=9D, =09

Love is very patient and kind, never jealous or envious, never boastful =
or proud, never haughty or selfish or rude. Love does not demand its own =
way. It is not irritable or touchy. It does not hold grudges and will =
hardly even notice when other do it wrong. It is never glad about =
injustice, but rejoiced whenever truth wins out. If you love someone you =
will be loyal to him no matter what the cost. You will always believe in =
him, always expect the best of him, and always stand your ground in =
defending him. All the special gifts and powers from God will someday =
come to an end, but love goes on forever. There are three things that =
remain-----faith, hope, and love-----and the greatest of these is LOVE. =
1 Corinthians 13:4 - 8, 13 The greatest … is LOVE

Greatest Website on Earth:
Daniel L. McGrew, AAS, BIT, MIT, A+, Network+ Certified =
30% Disabled Veteran
181 Lakeway Drive
St. Matthews, SC 29135
(512) 595-4059 =20

You can find my NEW book here: http://50452.authorworld.com/=20
If you work for the federal government it is a MUST read.

You can find my cousin Becky=E2=80=99s book by clicking here.
If you like sci-fi/fantasy then this is a MUST read.=20

Check out my NEW Bulletin Board - Government Out Of Control.
If you have a rare blood disease like ME, then visit my website and talk =
about it with others=E2=80=A6=20

The CrossWire Bible Society (Greatest BIBLE resource)
Greatest Scrapbook Stuff
Greatest Resume
Greatest Computer Site

=EF=81=90 Please consider whether it is necessary to print this e-mail

Experimental Section:
My job search progress (3 year study - Which search engine is REALLY =
the BEST): ->
(* All of the information contained in the report at the url above is =
the sole property of Daniel Leroy McGrew. The information at this url is =
for sale by the owner, Daniel Leroy McGrew. The information at the url =
listed above may not be sold, resold, or reproduced in any shape, form, =
or fashion without the express, written permission of the owner, Daniel =
Leroy McGrew.The information located at the url listed above may not be =
utilized in any shape, form, or fashion without the express, written =
permission of the owner, Daniel Leroy McGrew)

-----Original Message-----
From: HILS [mailto:polycythemia-vera-fft-11801@lists.fireflyhealth.org]=20
Sent: Tuesday, April 07, 2009 4:37 PM
To: danix@mcgrew-fam.net
Subject: Re: [polycythemia-vera] JAK2 negative - advice welcome