Scared that I have PV..

Allergies, blood and immune system
1

I'v done the jak2 test and it was negative but the values of WBC RBC HGB and HCT are still high.

These were the values of my last examination:

WBC 16.0 (4.4-11.3)

RBC 5.90 ( 4.20-5.50)

HGB 17.3 ( 14-17)

HCT 52.1 ( 37-50)

Does these indicators means that I have PV or does someone with these values and jak2 negative was diagnosed with PV?

2

If the jak2 test was negative you may have secondary polycythaemia.

This can be caused by things such as living at high altitudes, smoking, being overweight, having chronic bronchitis etc etc. If that is the case then these things can be treated and their effects countered.

3

Hi Anna I agree with Angela.  However, your hematocrit is high for a woman.  I believe that in polycythemia the Drs prefer a woman's hemato to be either 42 or 45.  With men, I think 47.  It could be secondary polycythemia Vera.  We're not Drs just patients that try and help one another.  Perhaps further testing is needed.  What did your dr say?  Zap

4

Hi angela thanks for answering. I want to know Is the tratement for secundary polycythemia the same like in the primary polycythemia?

Thanks again..

All the best

5

Hi Zap thanks for replying

Yeah my hematocrit is high and thats terrify me.

To be honest these was the first time that I heard about PV. I've readed that PV mostly appear at people whos are 30 years and above and Im 23 years old. My doc. Isn't sure yet he told me to do some others examination but im still waiting for the results. can you tell me about secundary polycythemia it is curable? Thanks again Zap i know that you guys are not drs but your opinons really helps me.

All the best.

Gretings from Albania😉

6

I have the jak2 genetic mutation so I have primary polycythaemia. I take a baby aspirin every day and am now having venesections about once every four or five months. I started out having them every two weeks, then every month, then every two months.

I cannot say what the long term treatment for secondary polycythaemia would be as there would be an underlying cause for it, not a genetic mutation. So the disease that caused it would need attention too. But I imagine, initially, that baby aspirin and venesection would be used to reduce the risks of having blood that is too thick. Though that is only a guess. What has your doctor said to you?

7

Your levels are high, I would ask for a JAK exon 12 first before excluding PV also ask for your epo checking, like everyone says we're not doctors but it would be my suggestion Anna. Let us know how you get on x

8

Thanks again Angela I really appreciate it.

My doc isn't sure yet what it is..he first thought that is PV but when he saw that the jak2 is negative he told me to do some others examination but Im still waiting for the results he is a little bit surprised cuz of my age im 23 years old he cant belive that in these age i can have PV.

I wish you all the best

Gretings from Albania

9

Hi julia thanks for answering.

I've done the jak2 it was negative..actually i dont have a lot of information about PV just I know that these levels shows that I maybe have PV and that terrify me a lot. Any help or information from you will help me a lot to have a clear understanding about PV or secundary polycythemia.

10

Maybe you don't have pv. but my niece got it at a young age because she had an accident.

She stayed in a holiday apartment which had a broken gas boiler and she was poisoned with carbon monoxide. Her doctor diagnosed secondary pv. She is still getting treatment for it after many years but is healthy and happy.

Anything which deprives your body of oxygen can give you secondary pv. Drowning? Well, not total drowning obviously!

Asthma?

Sleep apnea? (Don't know how to spell that word)

As julia says, there is another test for another genetic mutation, the exon 12, and maybe your doctor should do that test next.

Don't worry, even if you do find out that you have pv it can be managed and you will be fine.

 

11

Hi Anna I see that you sent me 2 posts but for some reason they are awaiting to be moderated.  So I can't see them.  I don't even understand what that means.  Zap

12

There's two mutations Anna one is jak2 and JAK exon 12, have you been tested for both?

13

Hello zap,

The moderators are sort of like policemen who sit and watch what we put on the forum. There is a rule on this website which says that any link to another website has to be checked by them to make sure that it is OK.

It takes a few hours sometimes for them to approve it.

14

Hi ang well you've cleared that up for me.  I've seen it before and I thought maybe foul language or rude comments.  Who knew!  Zap

15

Hi julia I've been tested just for jak2. Thanks for telling me a should ask my doc about that😉

16

Hi Zap yes i sent to you 2 postes to thank you about your replaying and I dont know for what reasons the are aweating to me moderated. Thanks to angela that helped me too to understand..(sorry about my english that isn't so good)

All the best

Anna

17

Anna are you in the U.K.? Basically this is what I've learned about PV and I'm no doctor or anything so if anyone disagrees then let me know as I don't want to give Anna the wrong information. PV there's about 95% of people with it are JAk2 + then the other 5% most of them have another mutation usually it's JAK exon 12, if you have no mutation the criteria is that your epo is usually low around -3 so there's a very very small chance that you can have PV without the JAK mutations, however that more rare that PV itself. Then there's a type of polycythemia that is still primary that is your epo gene that to blame your epo is the protein that sends a signal to your bone marrow but it doesn't stop sending the signal so your epo is usually high, there also the Von hipple gene that's another mutation (that can present in younger people) again a primary polycythemia, then there's secondary courses from smoking, over weight, tumours, liver problems, heart problems, sleep deprivation, stress. Then there's a polycythemia that they find no reason for, that's when every test has been done and they are all okay, this they treat like it's a primary (even though it's not proven to be primary) because they now say that other mutations will eventually be found and they say that they want your heamocrit to be below 45 so it doesn't bring a stroke or heart attack. I hope this helps but again I'm no doctor and I might not be totally right it's just my interpretation with what I've read, if you look up the WHO criteria for polycythemia Vera and the WHO criteria for polycythemia. Do you have any symptoms? What took you to the doctors in the first place? Good luck xx

18

Anna sends greetings from Albania...

19

Hi Anna I have primary Pv.  I don't know a lot about secondary other than its caused by an underlying disease such as copd.  I do know we were all scared when we got dx.  It's something none of us heard of till we got it. I'm sure someone on this line has secondary Pv and would be able to help you better than myself.  You might not even have it at all.  Good luck. Zap

20

Is secondary polycythaemia curable? Well, we don't know that you have secondary polycythaemia for sure but let's just imagine that you do have it.

So why do you have secondary polycythaemia? Because something else is wrong with your body. You have another disease which is causing the secondary polycythaemia. Imagine that you have bad eyesight but don't wear glasses - you get headaches. If you fix the bad eyesight by wearing glasses then the headaches disappear. Same thing with secondary polycythaemia. If you fix the disease then the polycythaemia disappears.

But as I said, we don't know for sure that you have polycythaemia.

Has your doctor suggested a scan of your spleen?