High Normal Blood Work but JAK2 Positive - MPN Voice

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High Normal Blood Work but JAK2 Positive

Sklines profile image
16 Replies

My HGB is 14.6, HCT is 43.5, RBC 8.81, RDW is 14.5, Platelets 370

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Sklines profile image
Sklines
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16 Replies
mickey64 profile image
mickey64

Not sure what the rest means but your platelets are normal! Why did your Dr order a Jak 2 test, did you have problems?

Sklines profile image
Sklines in reply tomickey64

No problems. Had a CBC done as part of routine physical and platelets were close to 500,000. Dr. Had me get tested again in 3 months and they were same. Tested again, same. So he sent me to hemo. When I first had them tested with hemo they were around 450,000. Then he did a bunch of tests to include Jak2 to rule out MPN. Well, JAK2 was positive. Here I am 3 years later. Blood work fortunately remains stable. Phew. But, I still have that JAK 2 positive hanging over my head. On no meds. No symptoms. Still diagnosis is MPN but they have no diagnosis for which one. It is a wait and see where it goes situation.

Sklines profile image
Sklines in reply toSklines

Not totally sure of what % means but from what I do understand it is % of mutated cells. Lower % usually means ET, higher % usually means PV. Do you have ET or PV?

mickey64 profile image
mickey64 in reply toSklines

He say I have ET, your platelets are not that high. How old are you, no symptoms, slightly elevated platelets and hopefully your under 60 that would be a blessing. :)

Sklines profile image
Sklines in reply tomickey64

Nope, not under 60. I am 68.

mickey64 profile image
mickey64 in reply toSklines

So in theary being Jak+ does not mean you positively have ET if that's what you were looking for. Because if your platelets have remained that low for three years with no symptoms and your over 60 I would say that would a blessing but I'm no medical authority. I'm not sure about yr other counts I will have to look at mine but I think PV is also Jak 2+ 95% of the time more so then ET, but I'm not sure how they tell that one. People on this forum especially Maz are a wonderful help and would be able to answer. I'm a little in the fog about the Jak 2+ or -. Because only 50% of ET patients are positive but they the other 50% are reproducing uncontrolled platelets also. very confusing.

Mazcd profile image
MazcdPartnerMPNVoice in reply toSklines

hello Sklines, it is possible to have an undefined MPN and be on a 'watch and wait' plan, I assume you are still being seen by your haematologist to have your blood checked? best wishes, Maz

Sklines profile image
Sklines in reply toMazcd

Yes. Still seeing haematoligist. Was every 3 months, then every 6 months, and at last visit July 2015 he changed it to once per year. It worries me to wait that long but I am kinda trusting he knows what he is doing. Do you think I should go to a MPN specialist for second opinion?

Mazcd profile image
MazcdPartnerMPNVoice in reply toSklines

if you feel that having a 2nd opinion would put your mind at rest then, yes, you will need to ask your GP to refer you. Maz

Sklines profile image
Sklines in reply toMazcd

Is an undefined MPN more of a problem that a defined one? Are there statistics as to ultimate outcome of undefined MPN?

Sklines profile image
Sklines in reply toSklines

Hemo said my bloodwork is all in normal range. Believes I could have Jak2 mutation but no disease. Does that sound right? Will it likely turn into a MPN or something worse? Any cases out there that you know of to compare it to?

Mazcd profile image
MazcdPartnerMPNVoice in reply toSklines

No statistics, but a problem you know you have can be controlled e.g. aspirin, control of blood counts etc.

Evidence: most thrombosis occur is before or just after diagnosis

.

AirconBob profile image
AirconBob

I often wonder how many people would test JAK2 positive if the test was more commonly available. No wonder if you only test suspected MPNs that the result is often positive.

nodmeister profile image
nodmeister

I've all but given up with my consultant. I'm leveled at around 650 for my platelets, my JAK 2 was inconclusive (taken approx 4 years ago). One said he still thought I had E.T. and then I changed consultants and he says the 'jury' is out but never has any idea why I feel so lethargic, rough as hell some days and scratch myself as if I was infested. Don't even mention the headaches!!!!! At least I don't have to see him anymore I get my bloods done at the G'P.'s every 10/12 weeks and his secretary always say's he's quite happy with the results!!!!

I am 56, also have root nerve damage in my lower back, high blood pressure and have varying meds for those but just asprin for the 'E.T.' Oh and the old faithful... Gin and Tonic!!

Sklines profile image
Sklines in reply tonodmeister

Frustratrating. It is such a crazy disease.

nodmeister profile image
nodmeister in reply toSklines

You ain't wrong there....:)

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