Polycythaemia?

Hi all I'm new here.

I'm a 19 year old male tested for Polycythaemia. I had 2 blood tests undertaken previously prior to my referral and both times haemoglobin and red blood count was high. Referred to Queen Elizabeth Hospital and had more blood tests done in addition to a oxygen saturation check which was 96%. Just wondering what is the likelihood of me having PV. Very worried about this as the doctor at the hospital said I was literally borderline. Any help/advice would be much appreciated.

Many thanks

3 Replies

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  • Hi

    Welcome to the forum.

    Ask for a JAK2 test. 95% of PV patients have a gene mutation called JAK2. This will be a good indication.

    What was your HGB level? normal range for a male is 13.5 - 17.5 in the UK.

    Make sure you are well hydrated as dehyrdration can cause elevated HGB levels, so if you are borderline take a look at this. I know when i was 19 my hydration levels were not what they should be, too much excercise and drinking beer and not enough water.

    Not sure what the oxygen saturation check means, it may be in relation to a condition called secondary polychthaemia, although i always thought this was usually caused by years of heavy smoking.

    Let us know how you get on.

    All the best

    Paul

  • Hi, welcome to this forum. I have PV also but I am Jak2 negative.  Mine was confirmed by a cell mass test done in the nuclear medicine department of the hospital.  I think although on the forum a lot of us have PV but sometimes the symptoms, treatment, etc needs to be considered on a very individual basis.  Wait until you get all your tests done, go to the next appointment with your questions written down and insist on explanations until you understand what you have.  Once you understand, you can then find out as much as possible about your condition so you take control of it and then with support you cope and live with it.

    If you have PV, you couldn't have come to a better place than this forum.  You will get tremendous support from people who understand exactly what you are going through and gain new friends.  If you go onto the MPN Voice website, there is a wealth of trustworthy information on there and Maz our editor can direct questions and get answers for you on medical issues.

    Lastly don't panic if you have PV, there are a lot of people who have had it for years and are still alive and kicking.  The important thing is to get a firm diagnosis and the best treatment.

    Take care, keep in touch. Some x😺

  • Hi

    How are you doing ?

    I can relate to your worries I was 30 when diagnosed at 19 you are very young. To be sure you will need a red cell mass test and ultimately a bone marrow biopsy. I have recently been told normal oxygen saturation is 97% mine was 95% , are you a smoker ? If so that will reduce your oxygen levels, you will see from the many posts that we are all affected differently with lots of similarities. If you can't find the information or answers you need just ask there are lots of people here who will help.

    Good Luck,

    Ourlife

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