Should I get tested or not?

Any issues concerning your blood should be treated. You don't nessesarily have to have symptoms to have pv or anything else. Having thickened blood make circulation difficult. It can also add to breathing issues with copd. Don't be a hero, get it treated and find the cause.

I too had chest infection (pneumonia) and have symptoms of PV.  I think you should ask for a consultant - they are usually wonderful and very knowledgeable.

Good luck to you -

Monny

Hello jessie. I suppose it depends on how much you want to know about what may or may not be going on.

I got some weird symptoms at New Year and, after a couple of months of putting up with them, went to my GP.  I thought that I was just getting on a bit and had bad circulation in the cold weather. 

The GP sent me to the hospital for a scan of my hand.  One thing led to another, as it does when hospitals get hold of you. I was diagnosed with PV not long ago. Because of my age the hospital's guidelines say that I should go onto chemotherapy tablets for the rest of my days. I have never been an ill person and I have always had an empty medical cabinet. Sticking plasters do for most problems,

I have fought off all the hospital's chemo suggestions so far and am sticking to aspirin and venesection. 

To be honest, I wish they hadn't diagnosed me at all.. I understand that, untreated, a stroke or heart attack brought on by undiagnosed PV would probably have killed me by now or in the near future.  For me, that would have been fine. Really. The idea of going on and on as a "patient" with an endless list of appointments is more than I can bear. 

As I say, it all depends on who you are as a person and how much you want to know about yourself. I am sure you will make the right decision for you yourself.  All the best.

Jessie you shd have your GP refer you to a  Hematologist. he will    diagnose the

problem Ths is serious!!!

Harrishill is right, it is serious. Are you in UK? If so, your GP would refer you to a local hospital with a haematology unit. I am still in the early stages of being treated. I have had tiredness (fall asleep in a chair - never used to), get puffed walking uphill where I used to run and often feel glaikit,as the Scots would say, and so on. These are signs, in my case, that my heart is having to work harder than it used to because my blood is thick and uncooperative. 

I have had five venesections so far, once a week to reduce the high levels of haemaglobin, white blood cells and platelets in my blood. I go along to the local hospital (20 miles away!) and my partner drives me home - they like it if you don't go alone. For me, the venesections give instant relief to the gormlesness and tiredness. I almost skip out of the clinic and I feel "normal" for days afterwards. The consultant gave me a month off them and I am due to return next week for another fireside chat and, I hope, another dose of bloodletting.

I can cope with a monthly visit for half an hour to be drained of my blood. I can't cope with the idea of pills every damned day for ever. Don't ask me why, we are all different aren't we? 

I asked the consultant why, if chemo tablets jnhibit the production of red and white blood cells and platelets in a random and indiscriminating fashion, and venesection removes red and white blood cells and platelets in a random and indiscriminaring fashion, they are so keen to press the tablets on me and not let me go on with the venesections. I can't say I got a satisfactory and convincing answer. I suspect that the cost difference is massive.

Anyway, if I can help with anything else, given my very limited knowledge of this condition, do let me know.

All the best.

Years ago during a routine blood test I was told I had a raised red blood count, but it didn't need any further action,  it should be OK.  Several years later a similar blood test confirmed a higher red blood count and I was referred to to a haematologist.  Since then I have had a lot of drug therapy over many years and still need to take one of these which now controls my blood count at a normal level.  PV is  almost certainly caused  by a defective gene at birth but may not manifest itself with symptoms until much later.  There is no set pattern for this.  The symptoms you describe could well be associated with PV but it needs to be diagnosed professionally by a haematologist who can prescribe treatments to suit your diagnosis.  Properly controlled you can comfortably live your life without too much disturbance other than regular medical monitoring as you will undoubtedly learn.  Take action now, put your mind at rest and let's hope that you do not have PV which is a serious disorder, but it needs proper diagnosis and haematological care.  As mentioned I have had PV for a very long time now and I have never suffered hydration problems with it.  Perhaps others can advise you further.  I wish you the best of luck for the future.

Hi to all you very helpful guys here:   I took the advice offered and have seen a doctor today !  

The doc checked back on my blood tests and said I have had high heamoglobin levels for years (14 years in fact).  Also said that as I probably have some COPD (having no treatment for that) that will be the cause, so her advice is to just carry on as normal - no need for further tests, venesections etc - didn't even suggest daily aspirin !!  I had the impression that further tests would only be made if no probable cause was apparent.

Relieved but on the other hand it is strange how GP's advice differs as if I had continued with another docs recommendations years ago I would be having (as he intimated) more tests and probably venesections by now.

Thanks to everyone who gave me advice and information, it was all very useful indeed and I am really grateful you took the time to reply, and it did make me get it checked out.  best wishes all.   j.

Hi Jessie. The problem is that a GP can't diagnose a rare blood disease. He must refer you to a hematologist who has experience with rare blood diseases. Most health plans will pay for seeing the hematologist. The only test he will take may be one blood test to see if it is due to the jak 2 gene or not. The blood test is not expensive and is usually paid by your health plan. If it is diagnosed as polycythemia vera, it is treatable, and you can live a normal life. But it is very necessary to see a hematologist. Good luck.

I was picked up as having PV due to a random blood test.  My haemotologist gave me the impression that it was serious but manageable. I had no symptoms apart from getting hot and tired - but I just thought that was the menopause (or else my Parkinsons!).  I have been told to try and drink 3L water a day and that does seem to help.  I have a  monthly blood test and if result is over 0.42 HCT then I have a venesection. I am also on a daily aspirin.  I have not needed a venesection the last two months, which is when in addition to water I had been taking a daily spoonful of apple cider vinegar - don't know if this is a co-incidence.