I'M NEW...RED BLOOD CELLS HIGH
Posted , 3 users are following.
After spending 15 minutes with my Primary for blood pressure med evaluation, I asked how my blood tests were...he said fine. After reviewing CBC, on line, my HCT was 51.5 along with all high results for all RBC's . They have been high since 2013...last year he through out the word polycythemia. Yes, I have a lot of symptoms. My primary has always been on top of things. Oh yah, I'm 67 and female! What next?
0 likes, 9 replies
angela_o..o gail_50
Posted
If you live in UK I would ask to be referred to my local hospital's haematology department for an interview with a consultant haematologist.
gail_50 angela_o..o
Posted
I feel uncomfortable asking for a referral from my Primary because he seems to have missed the Lab Results. I have registered for an information meeting with MPN tomorrow night in my area. Hopefully I'll be able to get more information on Specialists in my area of Wisconsin, USA. Thanks for you response!
peter98873 gail_50
Posted
Hi Gail'
It is early days for you I suggest. Have you been referred to a haematologist yet? It is not until you have been through the tests offered by this specialist that your results will provide an accurate diagnosis of your symptoms, and any following treatments to consider. It is not unusual for a person of your age to be first diagnosed with Polycythemia which could well have been present with you since birth, due to a faulty JAK2 gene. This is something that will be verified when you have had full tests completed and a diagnosis made. It will all take time so bear with it and see what transpires. PV is a rare disorder of the bone marrow which overproduces red cells and creates the problem. There are plenty of other contributors to this site who will be able to advise you as and when necessary so just keep in touch with any queries you may have. Best wishes.
gail_50 peter98873
Posted
peter98873 gail_50
Posted
Thanks for your response. As you are in US can I suggest you make a contact with Zapamania whose details will be found on this forum. She lives in US and has extensive experience of what is available in your parts on the PV issue, and its treatments. Also ItchyChris is similarly placed to advise. Best wishes.
Peter.
gail_50 peter98873
Posted
peter98873 gail_50
Posted
Thank you again for your reply. I think that the two people I suggested can really be of use to you. If I can help further just let me know. Let me know how things turn out - it is always good to hear that others have benefitted.
My best wishes. PV can be difficult to understand as being a rare condition it is not widely known about even with some medics too. Take things easy and you will soon learn more.
Peter.
gail_50 peter98873
Posted
Hi Peter! After questioning my Primary on line about lab results, he assured me that he was overseeing this....he said he wants my HGB to be 19 or over....mine was 17.5....HCT 51.5....before referring me to a Hematologist.
I guess I'll just keep my on it! Have many of the symptoms though...The MPN Meeting was informative!
Thanks again for your responses...you've been great! Hope this finds you well! gail
peter98873 gail_50
Posted
I can understand your medics thinking on this matter and the figures you have given are probably in line with the regulations that exist in your region. I take the view that PV is a very serious and rare disorder that should receive the attention of the haematologist as soon as possible, after all they are the recognised experts in blood related disorders. Many general doctors will never be presented by a patient with the disease because of its rarity aspect whereas Haematologists invariably have a number on their lists to deal with having received patient referrals from other general doctors. Most will know of the illness but not necessarily have any experience in its treatment. It is a very specialised and complicated complaint which deserves an expert diagnosis. There is always the possibility that PV is not necessarily your problem which would be a great bonus.