Hello Jennye30xx

Welcome to the forum although I'm really sorry to hear that you're dealing with some health concerns at the moment and still waiting on a formal diagnosis. We know that for many people this period of uncertainty can be really difficult. 

I've had a look through the forum but I can't see that we have any members currently active who have polycythaemia. However, if you'd like to read through some of the posts you can find them using the forum search function. 

Hopefully, you won't have to wait too long for your appointment with the haematologist will be able to give you some firm answers about things. If you are diagnosed with polycythaemia then the good news is that with proper monitoring and treatment, most people with PV have a normal lifespan and quality of life. I'm sure that you would be able to connect with others who have this condition via the Blood Cancer UK forum. 

If you'd like to talk things through with one of our team of nurses ahead of your appointment you're most welcome to give them a call. I'm sure they will be able to give you some information and support. They're available Monday to Friday from 9 am to 5 pm on 0808 800 4040. Do give them a call if you get a chance. I'm sure they'll be able to offer some reassurance. 

Keep in touch Jenny and let us know how you get on. 

Best wishes, 
Jenn
Cancer Chat moderator 

What was the outcome here? I am experiencing something similar.

Hi there my resuts were   Hb 166 is that high 

I am experiencing such crazy things 

Pins & needles in legs pounding in head 

Dizzyness too

Hello , I was just wondering what your outcome was if you don't mind me asking , I have high haemaglobin and I am terribly worried. 

Hi, at the age of 21(now 48) i had this. I first noticed something was off when i began to get a lot of tiny red dots on my feet. I did nothing about it because, I dunno, i just assumed my shoes were too tight or something. Even the dermatologist assumed it was because of my shoes or being on my feet all day. Things came to a head when i got a hard lump (down below). After being sent to urology, it was deemed it was a superficial blood clot. They took bloods to see if anything was out of kilt.

During all this time I was getting what i can only describe as fireworks going off in my eyes when i closed them lying in bed at night in the dark. Again, thought nothing of it. Also got peridotic numbness in both my fingers and toes. It would wear off during the day. The bloods came back and my haemoglobin came back on the high side of normal, and continued to rise over the weeks. So i got a diagnosis of polycythaemia, but they had no clue if it was secondary or primary. Got referred to a haematologist.

Those red spots on my feet turned out to be leaking/burst capillary blood vessels caused by having too much red blood cells.

After a battery of tests, one involving a large syringe of blood being removed, tracers added to it, then it injected back into me, it was determined my polycythaemia was secondary. As my spleen etc were fine too.

The cause of my polycythaemia was chronic dehydration. Was my own damn fault. Back then i was drinking a lot of alcohol. Like a lot. Bordering on being an alcoholic if truth be told. I drank next to no water. Only larger, vodka and coke.

That actually saved my life because without that scare, i'd have probably drank myself into an early grave. Not touched alcohol since then. My polycythaemia sorted itself out within 3 months once i began to drink a lot of water.

So yeah, secondary issues can cause these readings.

Thank you for sharing. You have made me feel a little better. I am so pleased you managed to turn things around with your drinking. That's not an easy thing to do! 

 I'm 36 and don't drink excessively but do drink a lot of coke. Never water. I'm hoping it's as simple as dyhydration. I've really not been in a good place through worry. I can't seem to contain it . I have had a whole host of other bloods done today including a jak 2 test. Too worried to google what this is all about. I don't really have any symptoms. I get the odd chest twinge and pain under armpit but I think this could be down to my anxiety. 

If the JAK test comes back fine, don't be surprised if you get a number of physical tests. Such as a sleep study for sleep apnoea, lung issues etc. Secondary is usually seen in smokers, people who live at high altitudes, lung issues, dehydration, sleep apnoea, obesity etc. Basically anything that causes the body to create more red blood cells as to give the body more oxygen.

Hi.  I just got told my blood has come back on the high side of normal.  I also have noticed these red spots on my feet and have been concerned about them.  I have been drinking way too much alcohol.  I am so glad I found your post.  I just poured the wine I had left down the sink and I will not drink again.  I really hope I have not left it too late and can recover.