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Really worried -High Hemoglobin Levels

Jennye30xx
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Hi everyone, I'm new to this forum and looking for some support and advice if anyone has been through similar 

I have currently had some blood tests done and it came back that my Hemaglobin levels were 164 and my doctor has referred me to a Hematologist and I am awaiting for an appointment. They mentioned the condition Polycythaemia but said I would need to be referred

Since November I have 3 glands in my neck enlarged , in January My folate levels were really low which I take supplements for and now I have higher hemoglobin.

I am experiencing headaches, feeling lightheaded and nosebleedsmy hands, chin and ears change colour in the cold to a purple colour but return to normal in the warm.

I am so scared of what may happen to me and I am worried that I won't be around for my son who is only 3.

has anyone experienced anything like this with polycythaemia.

thanks 

Parents

  • 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 

Reply

  • 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 

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