There are 2 main types of polycythaemia. Primary and secondary.  Primary is a form of cancer (it was re classed as a cancer a good few years ago), and secondary as the prefix alludes to is caused by another underlying condition. The common causes are living at high altitudes, lung disease, chronic dehydration etc.

I had secondary, must be hitting on 15 or so years ago. Mine was caused by drinking a lot of alcohol, and drinking zero water. I never drank water for years. Luckily, my warning shot that i had an issue was a superficial blood clot. During the testing phase, the haematologist said to me, would i be sat here in the state i was if i was being diagnosed with type 2 diabetes. I said probably not. She stated, if there was someone next door, the same age getting a diagnosis of diabetes, and me getting a PV diagnosis, I'd out live them. That kinda calmed me down.

But yeah, after all the tests came back, mine was ruled as secondary. Took me months of drinking a lot of water, and giving up the alcohol to get my numbers down again. The reality of this condition for many sufferers, they die with PV, not from PV. There are a lot of PV sufferers out there living decades after their diagnosis. Older people (70+ with the condition usually have comorbidities), and struggle with it more. You're symptoms should get a lot better once it gets treated.

You'll read stories about how this can heighten your chances of getting leukaemia, but that's just a very, very small number of people. You're talking single digit numbers. Like i said, there are many people with decades under their belt with PV

ProfBaw said:

lung disease

Yeah, My lung keeps getting infected, I already have NAFLD, so don't drink, and yeah been told to drink at minimum of 2 litres of water a day to help avoid clots. Thank you for the reply ProfBaw! - does make me feel a bit more settled

Hi Naomi,

Yeah I've had a x-ray and bloods and come back on notes I have polycythemia. The haematologist requested the bloods and x-ray.

Yeah, am not that worried currently. Just wanted to sort of know what changes I need to make other than drinking lots of water. I've had 6 blood tests 4 high Redblood cells and my blood test a few days ago was back to nearly normal

The gold standard test for PV, and most MPN's is a bone marrow sample. I had mine done via my hip bone. As the nurse said, there are other causes for this condition. It's why it's broken down into 2 types, primary (PV) and secondary. I was initially told i had PV because, like you, a number of my blood tests came back repeatedly high. Those blood tests are still not definitive answers. Another thing that can point to it being a MPN is having something called a JAK-2 mutation. This is often seen in people with MPN's.

Do you know if you've ever been tested for that?

As for what more you can do, simply going with the same advice others with blood clotting problems get. Keep active, drink a lot and lay off the diuretics as much as possible until treatment begins if you do happen to need life long treatment. Do not begin to take things such as blood thinners (Aspirin etc) unless directed to by a doctor. Because doing so can cause issues on its own.

As i said in my initial post to you, if you do happen to have PV or something similar, do not go having yourself dead and buried. It's something people just live with. I went through this 15+ years ago, so treatments have probably advanced more since i last researched all this. Cancer is a scary word, and any person would jump to the worst case scenario, i did too. But fortunately, not all cancers are equal in that respect.