So frustrated

Hi he's just rang me and it's negitive for JAK2, I've to have a CT scan and a lung test so the tests go on, pleased I've not got JAK2 though xx

That is great news julia.  I suppose now it is to find the secondary cause, but those tests won't take such a long time?

The thing is - as I understand it - treatment of the secondary cause can help the polycythaemia so much.   Others here will know better than me on this though.

take care

j x

 

Can any one recommend any information regarding what tests I should ask for, I'm having a CT scan on my lungs, heart,kidneys and liver and a ultra sound and wondered if there's any thing else I should ask for to ultimate everything that can make your red blood cells high? Xx

Glad you at last got your results and it is not primary, at least now you know and can concentrate on the secondary. Hope you get results quickly. All the best.

Hi Julia. I as well was diagnosed with secondary Polycythemia. This was after a multitude of testing. I had a cat scan, ultra sounds' bone marrow aspiration, sleep apnea test. Heart monitor that I had to have on for 24 hrs. Finally a diagnoses of COPD. I was having difficulties breathing on exertion. Fine while I was sitting or walking a short distance. My treatment is blood thinners as opposed to low dose aspirin due to clotting in my one lung and vitamin B-12 injections monthly. My HCT is a bit high but not high enough for me to have phlebotomy's. I feel great now and part of that good feeling is knowing my treatment. Blood work now every 3-4 months. Hope this helps you. 

Lol... I should have read your next post lol... Glad to hear its negative Julia... I have no idea why they want to do a Ct scan. I'd ask for a MRI, although I doubt they'd be able to do one on your lungs. What is your itching like and which Jak2 test did you have done? Did they tell you? I had the Jak2 v617f (the more common one done, which accounts for 96-97% of all PV cases... 

Yes that's the one I had the JAK 2 v617f, it was negitive and surprised my specialist, he was convinced it would be positive, but it's good it's not, but I need answers to my bloods been high? Unless it's just me! and for me they are naturally high, as long as they don't get any higher!!! Xx

Do you have itching Julia?

I've wondered if that is my case as well (naturally high counts), but I'm not convinced... Do you run? Because it's my understanding thect that might make your RBC, it least in some individuals, higher. 

Yes I do have itchiness and dizziness, palpitations, tiredness and headaches, pins and needles in my feet and hands, He wants to do a CT as he's thinking of tumors on my kidneys or somewhere but I don't think I have anything like that and don't smoke and never have. I'm rather frustrated, I need answers even if its menaporse but I'm unhappy my blood are so high

Yes I do run but over weight at the moment, I've not done any in a while but going to start again next week xx

Meh, I doubt you have a tumor on your kidney(s), but I'm also not a Dr... I hear ya Julia, I'm frustrated as well. I see an allergist in two weeks, can't wait. although I doubt he'll resolve my itchiness. Do you itch after water exposure? I do sometimes, but its quite variable... I'm generally just itchy, but when I scratch ot rub gently, I get what look like histamine marks, or lines... It's weird to say the least... I've compared my blood work to my twin's, and it seems we're not far off from one another, so I don't know..

Its quite possible you just have naturally high counts... Was it just your RBC counts that were high? How was your platelets and WBC?

I'm going to cut out all high iron foods like red meat, spinach etc....and just eat fish and chicken, cut out salt, go on a strict diet and exercise regime and see if get a better reading, if I don't then somethings off xx

My platelets are 385, so normal but on a higher level white bloods normal around 7.4 my red bloods are around 6.00 should be 5.00 hymocrit around 48 and my haemoglobin 17.1 so all red bloods high, what are yours? I might go and give blood myself too, if they will take it? X

Do you have any idea of your oxygen sats?   I bought a pulse/oxymeter to keep a check on mine as they always read low.

 

Jess, do you know what the O2 Sats are supposed to read if you have PV? Are they high of low?

No I don't know, he did mention that test though, but with me not been a smoker or never been one I thought my lungs should be okay, my brothers had kidney cancer and had one of his kidneys removed so they are checking my kidneys too. X

kevin I have high hgb and high hct but no diagnosis !!   Just every hospital visit for whatever I'm put on oxygen and a drip 'cos my sats are so low.  I'm not breathless, no chest complaints, so I think (not a doctor) the high levels are preventing oxygenated blood.

That is only my idea, could be quite wrong.

Got the oxymeter to keep a check.

 

My last complete blood count (CBC) indicated everything was normal, and that was 5+ months after donating blood. So, November of last year my Hb was 18.3, although this complete blood count was through a private company, at the hospital (a day after getting my results from the private company, their lab had me at 17.6 (Normal being 17.5, but some places 18.0 is considered normal). A week later, Nov 17, I donated blood. Upon doing that, the next day I had more blood taken and my counts were lower, 17.2 Hb, Hct 48.0 (52.0 being normal) through the private company, and it would have probally been even lower if I had done the bloodwork at the local hospital, as I have noticed that their numbers seem to always be lower than the private company. In Janruary, I had more blood work, this time my HB had risen a little in 56 days, to 17.6 Hb, and 49.0 Hct through the private company. The Dr Internist I had seen, had in the mean time, done all the other blood tests, including the Jak 2 test, all of which were negative. She said, lets wait another 3 months and see what happens. So at the end of March (this year), I had more blood work done through the private company an this time, my number had dropped, or stayed the same, 17.4 hb down from 17.6, and my Hct was still at 49.0... My Hct, going as far back as 2007, has always been 48-50 and my Hb has always been between 16.8-17.3.

I for got to mention that my platelets and WBC are all normal, my platelets always arounf 236 and my WBC always around 5.7... The only other number that was off, was my lymphocytes, which at one point, were 0.7, when they should be at 1.0... But there is a total value, and I think I met that... However, my last CBC, they were 1.1, so normal...  

Ah ha, so Jess, you are in the same boat as Julia and I, no diagnosis as of yet..?

kevin - Yes absolutely in the same boat.   Had high figures for 14 years I discovered but when I queried them doc said it's probably secondary with no tests.   I'm not happy about that, so trying to get more testing done.