Just thought I'd send an update as I went to my haematologist appointment today (see previous post for info/comments) and thought my experience might help others here who are curious about PV and don't have a diagnosis yet.
I was referred to Haemo when my bloods came back several times with RBC 6.0, Hb 16.5, PCV .50, MCV 99. My GP basically diagnosed PV but said the JAK2 test would confirm it. So, for two-three months I anxiously presumed I had PV and awaited my appts at the hospital with Haematology. I am American living in Ireland and things are done differently and more slowly here (you have to wait to get letters for doctor appointments in the mail!) so the anxiety was probably more intense for me, I must admit, but 2-3 months is a long time to come to the result I got.
Today, I met the haematologist and he told me the JAK2 test was negative. They took more blood to test for other function (liver, kidney etc) I don't have those results yet, but they have always come back normal which is why my GP suspected PV and not secondary polycythemia. He also had me get a chest X-ray which I don't have results of yet either.
He basically told me that this is Secondary Polycythemia and is probably related to lifestyle choices. I.e. lose weight, exercise more, don't drink or smoke and the levels will probably come down.
He also said stop taking aspirin and that I can fly again.
To be honest, I feel more confused and depressed than I did before because I still don't have a firm answer.
I just turned 50. Could maybe lose a couple stone , don't smoke (but did, socially, years ago), and I exercise every day. I am a food/wine journalist so probably indulge more than I should! But, really? Can lifestyle alone cause this????
Anyway, I wish everyone the best of luck with their MPN journey, I hope it's a healing one.
Best,
Jennifer
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Jennifermcd
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Firstly, congratulations... and you should not be upset by this finding but quite the converse of course...
Lifestyle, unfortunately can and does often play a large role with the human biological processes...
For example; I have stopped drinking alcohol completely, no added sugar ever in anything, no processed foods, no soft drinks, very weak black coffee 2-3 times per day, (when none would be much better), and especially if one was really sticking to his anti-inflammatory diet regime... and no meat (just seafood), fresh fruit & veges...
And, finally, a really good exercise regime where I am usually extremely consistent in my efforts... (I am adversely affected from the colder seasons due to my MPN - and my enforced hiatus will not last much longer one hopes... spring is now just around the corner in the antipodes) Yay!
Jennifer, there is still a possibility that you might just have an adverse infection that is causing your issues, as that has also been known to occur from time to time too...
In any event, if it proves that you are in fact MPN Free! Then once more, congrat's...
If you are still concerned, maybe you should be also tested for the other 'Driver Mutations). Asid from the JAK2 mutation, two others are also known to exist - MPL & CALR... However, PV rarely has anything but the JAK2 mutation, in my understanding.
Hi, was originally diagnosed with PV in 2012 but after a second opinion last year was rediagnosed with idiopathic erythrocytosis which means I do have too many red blood cells, cause unknown. I’m negative to both jak 2 and Xeon 12 mutations. I’m very happy too that I don’t have an MPN but understand your confusion and desire for a cause. Perhaps one day another gene mutation will be discovered.
In the meantime I’m trying to lose weight and eat healthy with a balanced diet, drinking plenty of fluids. It is important to make sure your blood are tested regularly because too many red blood cells still equals too thick blood which can cause stroke and cardiac problems.
I’m not a medic but I’m not sure why you still wouldn’t need monitoring at least but I could be wrong. If you’re not happy, insist on a second opinion. Your gut feeling will tell you what’s right for you.
Hi Jennifer, I have PV and my JAK2 test was also negative. For around 95% of people with PV, they are JAK 2 positive, however there is another mutation that around 4% of people have instead- JAK Exon 12. This is the one I have. You doctor should definitely test for this before saying you have Secondary Polycythemia for sure.
I also am JAK 2 negative and can relate to your confusing feelings of feeling down even though it is “good” news.
It sounds like your lifestyle probably isn’t the cause if you don’t smoke and already exercise.
My blood counts continue to go high and cause me symptoms like dizziness, headache, fuzzy thinking, tinnitus and others.
My Drs have ruled out all possibility of secondary Polycythemia, so the best guess they have - and MPNs are under understood so there is a lot of best-guessing in the field - the best guess they have is that i have some sort of variant, and so I’m monitored monthly and get phlebotomists to control the counts every 6 weeks or so.
Good luck! Keep asking your doctors questions. Research yourself, find forums and websites dedicated to MPNs.
And stay on your own side as you navigate all of this, it’s an emotional thing at times, at least for me.
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