PV Sympthoms

This is where a proper conversation with your haematologist, asking for a clear explanation in layman's terms, is invaluable.

As has been said already, everyone with Polycythaemia has a different experience. The disease causes different people to have different problems which they have to deal with in ways that suit them.

In the meantime, drink lots of water-based drinks - plain water if you can - and this will help to keep your haematocrit levels down. This in turn might alleviate your symptoms.

Your Haematocrit and Haemoglobin levels are high, so not surprised your Doctor has started you on a venesection (blood draw) programme. I am at pains to point out that I am no Doctor but I suspect you may have Primary Polycythaemia for the simple reason that your White Blood Cell count is also raised. Here in the UK the range is 3.7 to 11.1 and yours is 13.1 so above the higher limit. In Secondary Polycythaemia, it is only the red cells that are ever raised by that I mean HCT, Hb and RBC, whereas with Primary Polycythaemia 50% of people also have raised White Blood Cells and/or Platelets. White Blood Cells are made up of Neutrophils, Lymphocytes, Monocytes, Eosinophils and Basophils. I would suspect that it is your Neutrophils that are raised within the WBC group. The fact that your Haematocrit (HCT) and Haemoglobin (Hb) are so high is a good indication and meets the criteria for further investigation. With that said, I believe your Doctor will now refer you to a Haematologist if they haven’t already and he/she will probably want to test you for the JAK2V617F mutation. 96% of people with Primary PRV have this mutation. If it comes back positive chances are you have Primary PRV. It’s a simple blood test but the actual testing of it in the laboratory is quite complex so it can take 4/5 weeks for the results to come back. Well that’s the case here in the UK if done by the NHS.  If it comes back negative, they will then test you for the JAK2 exon 12 mutation, which is another gene but rarer than V617F. If this doesn’t yield any results then they may want to do a bone marrow aspiration.

At this stage, at least there are some indicators as to what is causing you to feel unwell and more importantly, the Doctor’s are aware and are already treating you with the blood drawing so you are already in good hands. As mentioned, I am not a Doctor and the above only represents my own personal view but I could of course be wrong. If however they do diagnose Primary Polycythaemia, take heart from all the other comments you have received on this forum, it’s treatable and manageable. I am a case in point.

Let us know how things progress.

Take care

Keith

Starting to feel better, I get another treatment tomorrow. Stress is keeping me awake at night...even Trazodone won't knock me out. My BP was 157/102, but since the last blood draw, it's now reduced to 120/80. I guess it was the thick blood causing the high BP. I get another treatment tomorrow. Still waiting on the Jak2 test, maybe I'll get results tomorrow. Also got a ultrasound scheduled to look at my spleen and liver. My O2 is still dancing around 90 to 94, a bit low, wondering if that's got something to do with it. I'm participating more in my hobbies to keep me distracted. I hope it's not PV, but if it's secondary, I also hope it's not something worse causing it. On my white cell count, I noticed it was even higher back in 2007 when my red count was normal. I understand smoking and other conditions can raise it. I do have chronic bronchitis. Nobody in my family has ever had PV, so I have to wonder...though I understand it isn't always passed on. Thanks for asking.

Good luck John, I hope it's nothing serious too, if your white cells were high in 2007 it could be secondry, I'm sure you will know soon, I'm glad your feeling better. I'm still waiting for a JAK exon 12 it's going to be another two weeks. I think mines secondry with my EPO been 8, but I too will have a better idea soon also. Xx

Found an issue with the liver, but wasn't that specific. Just something was wrong, which just lead to more worry. I gave a detailed description of the report here: https://patient.info/forums/discuss/coarsening-of-echotexture-543931

I get a letting today. Seems to drop 3 points with each treatment. If the pattern holds then I'll just need a couple more before it stablizes to normal levels. Will be glad because it takes up two days each week, one day to perform a "need" test and another to do the actual ritual. 

Yes, but then you will still need regular tests to maintain the level.  Lowest I've been is 46 which was about 7 weeks ago.  Currently I have fortnightly checks and lettings and I keep hoping that at some point it might get up to monthly!  Btw, does your blood pressure drop a lot after a letting?  I have a lowish bp of around 98/65 (always been this way) and the top number drops to around 82 post letting and they wont let me off the ward until it rises above 90.

Yes, my BP drops. In fact, my last tests showed I'm down to 49%, so when they took blood today, my BP dropped to dangerous levels and they had to hook me up to an IV. I nearly passed out!

That's scary. I hope you're feeling better now.

I do, which is actually odd. In the past, the letting relieved aches and dizziness, and it did this time too. Reason I find this strange is even before the draw, my values were on the high end of normal. Meaning, I don't know why I had the aches/dizziness if it was in the normal range, yet the letting still helped. My platelet count shot up this time, maybe that's why. I read that the lettings do increase that particular value.

I could be totally wrong on this as I'm no doctor, but I'm starting to wonder something. The lettings make me feel better, and the US is showing abnormal echos. I stumbled on hemochromatosis, too much iron in the liver. It is treated the same way as polycythemia, and the patients feel relief after letting in the same way. I may mention this to my doctor, but I just don't want to feel stupid if I'm totally off the target in doing so. It would explain though the strange echo on the US, why lettings seem to help and why I don't carry the mutation commonly found in PV. Just wondering if this is the secondary condition that we've been looking for. I admit, I need to do more research as I'm still unfamiliar with hemochromatosis. I also noticed I get dizzy after eating seafood that is rich in iron (Tuna/Shrimp)...happened today and the letting relieved the dizziness. Just a thought.

I would be interested in knowing what u find as I've too thought that my problem could be heamocromitosis but like you i don't want to look stupid by asking, like you I get a funny feeling inside when I eat a meal. Xx

Yes, he said he's open to the idea. There is a new problem though, which may be causing the added dizziness. Aparently at some point this year I had a mild stroke that I was unaware of. ER downplayed the relation, but my GP believes it could be related to the dizziness. Furthermore, I had a similar stroke in a different area of the brain over 8 years ago, that showed up on a cat scan, which I was never told about.

My liver enzmes are coming down, now in the 60's after diet and no drinking. No infamation below the rib cage, but pain was experienced when tapping just above on the rib cage.

I've been prescribed a liver safe medication to help with the stress and anxiety. 

Gosh that's really scary that they say you had a stroke, I'm so sorry, it's good you went to hospital when you did. I'm glad things are starting to settle down too.

I suffer every day with dizziness, like a drunk feeling, sometimes really bad vertigo, my exon 12 is still not back or is negitive and my Heamotologist hasn't rang yet.

I hope your dizziness gets better it's not a nice feeling. X

Hi John - I would also be very interested to find out about any possible link with haemochromatosis.  I have recently been tested and found to have the 2 mutated genes for this, although I am not overloading with iron and do not require treatment.  I have been referred to a gastroenterologist and am awaiting my appointment.  HOWEVER, during the testing for haemochromatosis I was also found to have a raised haemoglobin.  It was originally 17.1. GP thought I was dehydrated after a throat infection/cellulitis but level did not come down after hydration. I was then advised to stop a diuretic I had been on for 30 years.  Haemoglobin came down to 15.9 then to 15.8. This is just above the top end of normal but GP doesn't want it to stay at this level so I have been referred to haematologist and my appointment is in 6 weeks time.  I have wondered all along if there may be a link between the raised haemoglobin and haemochromatosis but everything I've read says no link so I will watch with interest the outcome of your situation. Sorry for the long rant!!

I should have added that I am a 64 year old female any my main worry is also that there may be a problem with my liver. I don't know why as all my liver function tests were normal. I seem to feel weird tingling sensations which move about within my body.  I also had really bad dizziness but this has almost gone completely since my level came down.  I think a lot of my symptoms are anxiety related as I swim twice a week and have a long walk once a week and feel fine with this.