JAK2 Test
Posted , 7 users are following.
Hello All
Just wanted to drop a quick line to say I seen my Oncologist Friday afternoon for a routine 6 month visit. . . . . . They checked my Hematocrit an Hemoglobin. Hematocrit was 50.3 I just had blood pulled 7 weeks ago. . . . This is the highest it has ever been in the 10yrs I've been doing this. Hematocrit was 16.7. I have to go in Monday afternoon to have blood pulled. I also had them Redo the JAK2 test since my Oncologist can't seem to find my results from the last one in my records. I'm curious as to why my Hematocrit is so high this time in only 7 weeks time. . . . Has me a bit confused an worried. I've felt like blah here the last couple weeks more tired than I usually am. I have a question for everyone. . . . Does your Hematocrit and Hemoglobin levels ever seem to go up and down between your blood draws or they always usually about the same. . . . . Mine have always been all over the board. . . . . Low one time High the next. . . . This time with it being over 50 I'm really confused. . . . . .I'll let everyone know how the JAK2 results come back. . . . . . . Thanks All.
0 likes, 13 replies
Zapamania randal_373
Posted
Hi Randal I've had this Pv for 4 yrs. for the first 3 1/2 yrs I just had my blood checked and I saw my platelets go up 300 pts and a month later down 400 pts. My hematocrit was never too high. It varied but not worrisome. I think men's hematocrit should be no more than 45. Not positive. Now in the last few months my plates reached a million. So they started me on HU which lasted 3 days. I felt horrible. Now Jakafi. I couldn't take the 10 mg twice a day so right now I'm on 5 mg twice a day. My plates went down to 795 in a week. I do have the jak 2 mutation. Please let us know if you're jak positive. Linda
kevin81762 Zapamania
Posted
Hey zapamania.... My hematocrit has been 48-50 for as long as I can remember (over 10 years looking at past blood work). I think it probably varies for everyone. I will also note that my twin brother's levels are roughly the same as mine, or it least they were a year or so ago... I think if you have PV they try to keep you hematocrit below 45, but I as far as the new WHO criteria goes, without a positive jak2 mutation, their criteria for high hematocrit is 60... I have no diagnosis yet for my wacky blood counts. I am still waiting to see a hematologist, which I am slated too next June lol... they must not consider my a high enough priority being that the hematologist Dr has already reviewed my work. Yet, I am still not convinced. I know I am negative for the one Jak2 mutation (v617f), and that my EPO level was normal, but I can't seem to shake this itch, now going on 2 years. Cheers..
Zapamania kevin81762
Posted
Hi Kevin you're probably right about the hematocrit levels. They do vary from lab to lab. If your twin is identical I'm not surprised. The fact that they don't want to see you till June is kinda good. It means you're not in clear & serious danger. As far as the itch I imagine there's many reasons for it beside Pv. Will you ever find it? Hopefully yes. Take care Linda zap
harrishill1 randal_373
Posted
Hi Randall yes, my blood goes higher sometimes. Since you are probably not on any medication yet, your blood will go high until you get treated. If you have Polycythemia Vera, the oncologist will probably have you do phlebotomies (blood draws) occasionally, to bring it to a better level. If it's not too high, he may not. I no longer get the blood draws, because my meds keep it at a good level. Usually the oncologist can get everything under control. Best wishes,
harrishill
julia15874 harrishill1
Posted
Hi I'm female and my heamocrit is 0.53 and heamoglobin is 17.4, I've no diagnosis to why yet and I've loads of symptoms and they are doing nothing at all I'm in the UK, it's frustrating! X
Zapamania julia15874
Posted
Hi Julia that's a high hematocrit as I'm sure you know. Why is nothing being Done for you? You need to try & find an MPN specialist. I was with a regular hematologist for years who basically didn't do anything. When I found an MPN specialist everything moved faster. Good luck Linda
randal_373 julia15874
Posted
Hello Julia
I hope you find something out soon so you can get some relief. I've been following your post . I've never had Dizzy spells from the condition. I do feel light headed from time to time but not often. I know this condition effects everyone different. Hope you feel better soon. . . . . . . Randal
julia15874 randal_373
Posted
Thank you, I've not been that bad today actually, yesterday I was more dizzy but the tablets Don't help and I get drowsy too so I'm not taking any now, if gets bad again I'll go and see my GP and ask for a different one to try. I hope everything is okay for you too thank you x
julia15874 Zapamania
Posted
Yes I know, it's frustrating! The thing is my heamotologist wants to give me a red cell mass test and if he gives me a venesection it will make it harder to have a correct reading, so I think that's why nothing has been done, Im waiting for the appointment. I've also wrote to Clare Harrison is London and await her reply, I've also got a few other heamotologist sin mind and I'm going to pay privately to see, but firstly I wait Clare's reply, but I'm only going to wait until the end of next week and if I've no appointment for the red cell mass and Clare I'm going to make arrangements to see someone else, plus I had another blood test at the GP on Thursday they should be back tomorrow or Tuesday so I'll chase them up and if my bloods higher I'm not messing about, I've been with this heamotologist since July and getting nowhere. Thank you x
Zapamania julia15874
Posted
Hi Julia sounds like you've got a plan. They (the Drs) will run you ragged. I don't sit back and wait for anything. If I have to knock down doors, I will. I've sat here like a dope once upon a time and really believe when the receptionist told me the dr will call me back. Those days are over. You have to be your own advocate. Make sure you get copies of all tests and make a file. Hoping you get your answers soon. I guess you're in the UK. I'm in the US. Linda. 💞
kevin81762 randal_373
Posted
Hey Randal... Have you been diagnosed with PV? To be honest, In Canada, a 50.3 is like point 3% over the upper limit of 50.0. I don't think to mant Dr's here would consider that very high... It may be simply relative in that your dehydrated and blood plasma level is reflecting that. Curious, what time of the day did you have blood tested? Your levels will always be higher in the am, and lowest in the evening. That being said, my levels have been fluxuating as well, high, than low, but always higher in the am. The last two times I had blood taken, I went in the mid afternoon, and both times my levels were well within the normal, Hct was 47.5, and my Hb was 17.0. All my past blood work, going back 10 years, my Hb has been between 16.8 to 17.3 and my Hct has been between 48.0 and 50.0. Always...!
Best of luck with your appointment and hope it goes well for you..
randal_373 kevin81762
Posted
Hello Kevin
I was diagnosed with PV in 2006 . I've been having phlebotomys done since then, I usually have them done every 6 to 8 weeks ,my Oncologist changes it depending on how my levels run in between visits of seeing him every 6 months. He wants blood pulled off when my Hematocrit is 45 or over. Most usually it's anywhere between 46 to 49% but Friday it was 50.3 the highest it's ever been. They drew blood an tested it in early afternoon and I always have blood draws around 3pm. I try to stay well Hydrated drinking 3 to 4 bottles of water a day an even more during Summer months. The phlebotomys is the only treatment Im receiving at this time an I always take a full strength asprin daily also. How long have you had PV. I was diagnosed at 42yrs of age and no one else in my family has had this
kevin81762 randal_373
Posted
Hey Randal... Well, like a few of us on here, I am in the process of trying to get a diagnosis. Its been incredibly frustrating for me... I noticed slightly higher levels with my Hb and Hct over a year ago, and this was in conjunction with an itch I developed. Of course, alarm bells went off when I started googling itchy sking and higher Hemoglobin counts. I was referred to a Dr Internist, who did a battery of blood tests on me, Jak2 v617f test, Iron levels, B12, EPO, etc, etc, etc..... lol... and more blood work... Everything came back normal. So the Internist said that she didn't think I had anything wrong with me.... Well, I still itch I said, and I have no idea why? Was referred to a dermatologist, who diagnosied me with dermagraphism, which can cause very itchy skin. I also saw an allergist after that, who said I didn't have dermagraphism lol... Went back to the dermatologist, who did another test (using a chop stick) to write a number on my back (skin), which did wheel up... His response, "you 100% have dermagraphism." I give up... I have been referred to a very good hematologist, but my appointment is next June lol... But I was told that the Hematologist has reviewed all of my blood work, and that because my appointment is next June, he's not to concerned. That being said, I'm still not convinced. It's the itch for me, it came out of know where. I was supposed to have had a jak2 exon 12 test done, but the dumb hospital tested me for the other one again. I also found out that they don't even do the jak2 exon 12 test... What a mess! First, my form explicitly said, jak2 exon 12..lol.. yet they did the other one, again... which was negative like the first time. However, I have read that most hematologists, and MPN's specialists, won't even test for the jak2 exon 12 if your EPO is normal, which according to my results, mine was normal.. So I don't know. Ughhh... lol