High red blood cells

[Tobywhitedod]

Hi every one hope your all fine I've been feeling ill for a while then found out my red blood cells are to high had 2 venesections so far still feel no better will I start feeling better after a few more venesections thanks

[hunter5582]

The venesections may help with some things. It really depends on what you mean by feeling unwell. Did you get diagnosed with Polycythemia Vera (PV)? If so, do you know the status of your JAK2 mutant allele burden?

There are a host of symptoms we can get with PV or other MPNs. The deregulation of the JAK-STAT pathway can cause many issues besides too many RBCs. Fatigue is quite common. So are a host of inflammatory issues. The biggest risk factor with PV is thrombosis (blood clotting. DVTs, etc.) and microvascular events (TIAs, erythromelalgia, etc.) Many of us with PV can also have hypertension as the erythrocytosis makes the blood too viscous (thick). Venesections can certainly reduce your risk of thrombosis/microvascular events and reduce blood pressure. Venesection may not help with other symptoms. It depends on what you are experiencing and how your body reacts.

The Voices of MPN website is a great place to start learning more. There is some very good information on dealing with the symptoms of MPNs.

voicesofmpn.com/

All the best to you.

[Tobywhitedod in reply to hunter5582]

I have no mutations in my blood my bloods are fine just to many red blood cells all I can say really is I'm having venesections to get them back to normal sometimes my legs feel heavy and I feel very fatigue I've only had 2 venesections so far just wondered if I will feel better when my bloods are near to normal

[hunter5582 in reply to Tobywhitedod]

Do you know whether your diagnosis is Polycythemia Vera, Secondary Polycythemia, or Idiopathic Erythrocytosis? All would present with erythrocytosis - too may red blood cells, but they are conditions with a different etiology and potentially different treatment plans.

[Tobywhitedod in reply to hunter5582]

My bloods have come back with no mutations to show any conditions haematologist is saying its due to my life style must admit I'm an heavy smoker and on the verge of quiting all I no is my blood levels were 0.6 only had 2 venesections 3rd one thi Monday just wanted to no is fatigue and heavy legs a symptom of to much blood in your body

[cmc_ufl in reply to Tobywhitedod]

Smoking can cause high RBCs (erythrocytosis) due to frequent hypoxia (oxygen deprivation). Smoke reduces the amount of oxygen in the lungs, so the bone marrow produces more RBCs to compensate so that your organs aren’t damaged due to oxygen deprivation.

This is one of the many reasons smoking puts you at an increased risk of cardiac problems. More RBCs = thicker blood = more heart/vascular issues.

[Tobywhitedod in reply to cmc_ufl]

I've been feeling unwell its not every minute of the day it comes and goes one day fine next day fatigue and heavy legs its frustrating really just want to know if when my red blood cells get to normal will I feel better

[MichaelS in reply to Tobywhitedod]

I had heavy legs and thought it was psycosomatic because it was in the mornings on the way to work! I had far too many blood cells trying to move around my body, causing headaches, itching when showering, a lump in the bed on my left side, due to a swollen spleen and giddyness. This was in 1983. I was 37 and very stressed with work. I had several blood lettings, I think 3 in 2 weeks at the start and bit by bit I could start feeling better and the brain fog cleared. But it took several months.

It turned to MF since 2010, but before that it was polycythemia. I'm still alive and doing well 😊

[Tobywhitedod in reply to MichaelS]

My bloods came back fine and only saying to many red bllod cells I have COPD and smoke heavy i was feeling a bit weird for several months then my doctor found my blood was to thick im having venesections I've had 2 so far not feeling much better yet hope I do soon cos its an horrible feeling its hard to explain how it feels my rbc was 0.6 but going down slowly any one going through this I feel for them its an horrible feeling it comes and goes good days then bad days

[Tobywhitedod in reply to MichaelS]

How many venesections did you have before you started feeling better

[MichaelS in reply to Tobywhitedod]

It's hard to remember as it was way back in 1983 when I was diagnosed. I had quite a few venesections over several years but I think I started to get rid of the brain fog and other symptoms after a few months. The dosage of hydroxy was changed quite often as the blood responded to it or the drug failed to cope with the increasing level of blood cells. Remember, that everyone is different and react differently.

I wish you well and try not to worry.

[Tobywhitedod in reply to MichaelS]

I haven't been diagnosed with anything no mutations in any of my bloods my specialist is putting it down to COPD so I'm trying to quit the nasty habit

[MichaelS in reply to Tobywhitedod]

Good. I am sure it will help in many ways, if you manage to quit the smoking

[hunter5582 in reply to Tobywhitedod]

That would make sense then. As cmc_ufl indicated ongoing hypoxia could cause erythrocytosis. The venesections may help with some of the symptoms, but what will really make you feel better is to stop smoking. Easier said than done, but it is the ultimate solution.

[Tobywhitedod in reply to hunter5582]

Thank you for your answere as I never mentioned I have moderate COPD going to quit soon as possible thanks for the advise

[hunter5582 in reply to Tobywhitedod]

That makes it make even more sense. Please do stop smoking ASAP. You really cannot afford to continue. It is is tough addiction to conquer. Every bit as hard to stop as heroin addiction. DO consider getting help quitting. There are supports and medications that really can help.

[Tobywhitedod in reply to hunter5582]

Thank you

[Wyebird in reply to Tobywhitedod]

You don’t have to have a mutation to be diagnosed with an MPN. I advise keeping a Copy of all blood counts and if all is not normal pester for further tests and diagnosis. Good luck