just had my blood test come back as jak 2 positive which i paid for private as my hb was 19.8 on latest ahn i think hct 0.58 but my gp wouildnt order the test as he was blaming smoking and saying it was secondary i have had heart attack at age 47 now 51
think next steps is take this test to my gp for a referral if he will do it
Regarding your question about next steps, the next step is to get a formal confirmation of the PV diagnosis, which may involve a bone marrow biopsy. As I expect you know at this point, there is a big difference in consulting with a MPN Specialist. Most doctors, including many hematologists, have little experience with MPNs. This is the list many of us use to find a MPN Specialist, but it is not a complete listing. mpnforum.com/tsr-the-list/ Others on the forum can speak to MPN-expert docs in your area who are not on this list. The doc you saw privately may be able to recommend someone in the NHS as well if that is your wish
Note - I have two hematologist, one of whom is a MPN Specialist. My wonderful local hematologist, who is not by his own definition a MPN Specialist, handles my ongoing care. The MPN Specialist works with me to determine my care plan. This way I always get two opinions on every decision by doctors who I trust.
The other next step is to stop smoking if you have not already done so. You cannot afford the exposure to carcinogens nor to the hypoxia that smoking induces, causing reactive erythrocytosis. It is actively making the disease worse.
The next step will be to determine an appropriate treatment plan. You will need formal confirmation of the diagnosis to determine a treatment plan. For lower risk PV, the recommendation would likely be to start with aspirin + venesection for someone age 51. Given your prior heart attack and a family history of PV with stroke, you may not be considered low-risk. Cytoreduction may be indicated. Review of options for cytoreduction needs to be done with a MPN Specialist. You can also learn a bit more about your options from a variety of sources, including the MPN Voice website. mpnvoice.org.uk/about-mpns/.... The NCCN Guidelines are another excellent source of information nccn.org/patients/guideline... .
You clearly made the right decision to proceed with testing for the JAK2 mutation. You will need to continue to advocate for yourself and the care you wish to receive moving forward. Wishing you success doing so.
Thank you very much hunter if I need to ask any questions I will ask kindly if I can ask you as you seem to be knowledgeable if you don’t mind I’m so glad I went private at least I can go back to go and said I told you so at the moment I’m having some bone Bain feels like back pain but a dull ache that’s always there
Was there any additional info in the pdf they provided? In particular the % mutation or allelic burden. If not that is one of the worthy next steps. Your GP should be open to ordering this now or at least offer the referral Hunter notes.
Your Dr could be both right and wrong: 2dary polycythemia is possible with smoking, but PV is also very likely with the Jak2+ result. So it's not impossible you have both, a haem or MPN specialist is in order here.
Your platelets were normal so ET plus 2ndary polycythemia is not likely.
I know this seems a daft question but should I now start going on a diet I know I have to give up smoking 100% I was hoping it was negative but at least now I can call the gp incompetent and make a massive complaint imagine if I hadn’t paid for the test I could of had a stroke
The old nag of "eat better and exercise etc" is often offered by those who need to heed it. But it's still good advice and never too late. My other disease has cut my good habits but I still try.
Esp if stroke is a worry, you have direct control of some of its best known risks. Agree its time your GP helps you with the additional MPN risks too.
just going to add the result here
Glad you have a bit more clarity. While bittersweet to find out, as you say you now have important additional info. to get help to protect yourself.
Your report seems to say it was run by the Berkshire and Surrey Pathology service.. I googled to see what they said about their testing; link below. I think given that they reported your result as positive it means the Jak2 allele burden is at least 5%.
berkshireandsurreypathology...
Lots for you to digest; ask here and plenty of people will fill in the gaps where they can. Hope you get a quick referral.
Oh sorry, I’d mis-read the categories ( not clear if above or below 5%). Let us know how you get on with the next steps; hopefully it’ll all get properly investigated quickly now.
I was diagnosed with PV from having a Jak2+ blood test. I was told no need for a bone biopsy which I would have to have done if the blood test was negative because of my high red blood cell count with 3 DVT’s.
Well I had to go private for the jak2 test as my gp fobbed me off saying was secondary I’m gunna have a fit at him when I have my appointment
I'm not sure about "going on a diet" - that's hard work and adds an extra burden in addition to your heath worries. However, recent science highly recommends the "Mediterranean diet", which is not a restrictive diet.
Here is one example:- ashpublications.org/blood/a...
It concludes: "These data suggest that a Mediterranean diet, which is rich in anti-inflammatory foods, may be particularly beneficial to manage symptom burden in MPN. We are now moving on to larger randomized studies to rigorously test the impact of a MED diet intervention on symptom burden in MPN patients."
You can google a mediterranean diet - basically, it means less animal fat and protein, more plant fat and protein (e.g. nuts and seeds), as much variety as possible , and avoiding processed foods. One recommendation is to eat 30 different plants each week (herbs and spices count for this) - this is a fun challenge, as opposed to a restrictive diet. Add things rather than taking things away.
Good luck!
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