MPN Voice
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Do I have Polycythemia Vera?!

Hi guys,

My story is still in it’s infancy but I have been feeling light-headed & I felt my vision was not quite as good as it has been earlier this year (I went for an eye test and my optician said that my prescription had changed so perhaps that explains that part of it). I decided to go to my GP on Thursday of this week, she did a full blood count and I got a call from the surgery the next day saying that I should come in for an urgent follow-up, which I did that same evening. I was presented with a Haemoglobin reading of exactly 18, RBC count of 6.35 & HCT of 0.523. I have Non Alcoholic Fatty Liver Disease which elevates my liver function results on a relatively regular basis but they do go up and down. My Haemoglobin, HCT and RBC count has always been on the higher side of normal but has historically gone up and down one the years (since my liver has been monitored)

I was already concerned when she told me all of the above but then she proceeded to tell me that she thinks I probably have PV & has referred me to a haematologist for further tests in late December (there is only 1 private consultant where I stay and this is the first appointment he has available).

I suppose I am just looking to get other people’s stories on diagnosis/thoughts on my results as it seems like I am going to have a pretty long wait until I see the consultant!

2 Replies
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Hi, welcome to this forum where if you have got Polycythaemia you will get plenty of support. If you go to the MPN Voice website you will find trustworthy information.

I’m sorry I’m not a medic so could not give you a diagnosis but if you have Polycythaemia, you will be well monitored and treated as necessary so you will be looked after.

Keep in touch and share anything that is causing you anxiety and someone will always be there for you as members truly understand what you are going through.

Kindest regards Aime x😺😺

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Hi and welcome to this fab site where you will get lots of info and support should you be diagnosed with PV. Please be assured that it is not an awful condition to live with and if you are put on Hydroxycarbomide then the symptoms will ease greatly. You might have phases of extreme tiredness, dizziness and other irritating symptoms but nothing life changing really.

You have been so lucky to have a GP that has recognised the symptoms and have referred you to a haematologist so early. Unfortunately, the condition is rare so some GP's don't recognise it, as in my case. I had 3 letters sent to my GP from a hospital consultant who was concerned about my blood test results so, as you can imagine, I was really annoyed that this wasn't acted on.

Now, after initial venosections, I go in for a check up with my haemotologist ever 12 weeks and as long as my levels are stable, I have a normal life.

Keep in touch and don't google loads of other sites for information as some of them are quite scary. Here, you can talk to wonderful people who are going through the same thing.

Good luck with your appointment and keep in touch.

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