I’m a newby and still officially undiagnosed but to cut a loooooong story short I’ve had around 6-8 venasections over the past 10 or so years due to headaches and debilitating fatigue. Bloods seem to go up and down a bit by themselves but occasionally a venasection is required. Have been having joint and bone pain that we’ve been putting down to a long term generic antidepressant that I was switched to 18 months ago. I was loaded with side effects that we were putting down to menopause. Joint pain, hot flush sweating day or night, headaches and fatigue being the main ones that cross between menopause and poss PV. Dr took bloods and results are below. Had around 350mls blood taken 2 days ago. Wicked headache last night and fatigue and joint pain still.
Waiting on jak2 results I guess as there’s nothing on blood results about them but I know they were on the test form. I think my Dr is as in the dark as I am about PV and from the reading I’ve been doing I’m really none the wiser either.
Just floundering really and feeling a bit lost.
Haemoglobin:164 g/L ( 115 - 155 ) HH
Hct:0.49 ( 0.35 - 0.46 ) HH
MCV:92 fL ( 80 - 99 )
MCH:30 pg ( 27 - 33 )
Platelets:355 x 10e9/L ( 150 - 400 )
WBC:7.0 x 10e9/L ( 4.0 - 11.0 )
Neutrophils:3.1 x 10e9/L ( 1.9 - 7.5 )
Lymphocytes:2.9 x 10e9/L ( 1.0 - 4.0 )
Monocytes:0.6 x 10e9/L ( 0.2 - 1.0 )
Eosinophils:0.3 x 10e9/L ( < 0.6 )
Basophils:0.1 x 10e9/L ( < 0.3 )
8883552 Elevated haemoglobin persists.
Observation date:19-Nov-2018
Thanks in advance
Lou
❤️❤️
So Jak2 is negative. Nurse phoned and said "so, no Polycythemia Vera". (she couldn't even pronounce it) and I said not necessarily, there are some that are PV jak2-. What now? Nurse said I don't know but if your headache persists, come back and see the Dr! Not feeling very confident about how things are being handled. I live in a small town in little old NZ, so really need them step up. No other Drs here. Any suggestions? What should I ask him?
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Loubee27
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Even if the JAK2 test comes back positive and you are diagnosed with PV, you should not despair. There are treatments available that allow us to manage the disease very successfully and lead a normal life. I was diagnosed 4 years ago and today my bloods are normal and symptoms are minimal. Good luck! Susana X
Welcome loubee! I'm from palmerston north, ET JAK2+. A very quick suggestion ... demand your doctor refer you to a heamatologist. MPN's need specialist care and monitoring. There are a lot of people that are triple negative (no mutations at all), but you should be tested for other mutations as treatment options may be modified depending on results. Good luck and be assertive ☺
Hi fee13 from Palmerston North! I’m way down the other end in Tapanui. Thanks for your advice. I’m not really even sure if I have an MPN. does having the occasional high rbc and hct count as one? Just feel pushed aside and like it’s not an issue.
If it has been consistantly high (say 6 months) it needs to be investigated further. There may be other causes. Look at mpn voice site at symptoms & information to see if it could be PV.
It’s never re tested after a venesection so I have no idea. I’ve had probably 6-8 done where they take about 350mls over a period of about 10 years. It’s all very casual?!
Have there been any warnings or notes on the bottom of your result print-outs? Here is a link to some other reasons for high counts. I think because you have had this problem for so long the worst case scenarios may not apply. Can be simple dehydration, drinking pure water and cutting back on tea & coffee (even decaf stuff as I've found out) and have the occasional rehydration electrolytes (just watch the sugar content though).
There's actually good info throughout the page. A lot of your symptoms can stem from having high counts without PV but does not rule that out. Has anyone checked the size of your spleen? Again, they will need to know what they're looking at and perhaps your doctor may not be familiar with this either.
Sorry not to have seen your post earlier. I see you are from Tapanui. I'm not far North of Dunedin, so some of our struggles with Southern DHB will be similar. You really have been having a difficult time of it, and I do know the awful lonely sadness that is part of going to doctors and not feeling understood, believed or taken seriously. And the frustration of trying to express, in a 15 minute consultation in a warm sunny consulting room, how crappy and difficult life has been for months and months!
You are quite right that it is possible to have PV and be JAK2 negative, it doesn't happen often, but it does happen! The other thing that concerns me about the JAK2 test is that it isn't always 100 percent accurate anyway, so to rule it out for you on one test alone seems far too simplistic.
Given your troubling symptoms, the need for occasional venesections, and the elevated haemaglobin and hct counts, I completely agree with Fee13, you really do need to see a haematologist. Your doctor needs to know in no uncertain terms that you are not happy to keep on enduring this. Definitely request being referred to a haematologist. (I have ET and see one of the haematologists at the Dunedin Hospital).
I know it is really hard being your own advocate in this, if you have a friend or family member that you could take along to the consultation that might help. Also write things down if you can. I had a huge battle a few years ago to try to get something done about my wife's failing health, and I had to resort to going with her to consultations and writing increasingly stroppy letters. It was a very, very stressful time, but there was some value in having a paper trail of letters.
Do keep in touch with this forum, whilst we can't offer diagnosis, we can certainly give you a great deal of support as so many of us have really battled ourselves, and you will feel not so alone.
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Newly diagnosed with ET jak2+ and just looking for reassurance 
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