Diagnosis of PV
Posted , 4 users are following.
My former doc provided me with this diagnosis of PV and for unknown reasons released me from her care. All that I know is that my iron and hemoglobin levels are high, ranging from 17-18. I have no clue as to what this disease is about or what the treatments are. The lack of knowledge is very unsettlingso, out of desperation, I turn to all of you in this forum for support, advice and knowledge. My iron/hemoglobin has always been on the high side of normal, but in the past 17 months has gone from 17.1 to 18. I have many questions. Is this disease treatable? Is it a form of cancer?Is a hemotologist the correct type of doctor that I need to see? Currently I am watching my diet very carefully and I have discovered that drinking 2 cups of hot green tea each day does lower my
Numbers fairly well. I'm basically in the dark about everything and am frantically trying to educate myself. Any support or advice/information would be greatly appreciated. I am 61, in good health, but very tired much of the time. There is no history of this in my family. Thanks in advance for any information anyone can provide.
0 likes, 6 replies
ellen68007 lib00803
Posted
lib00803 ellen68007
Posted
Ellen, Thank you so much for responding to my post. This morning I made an a with a hemotologist. Unfortunately, I couldn't get an apt until August 5th. I will continue to post as I get information. Thank you so much!
keith28441 lib00803
Posted
Hello Lib
I am surprised that your Doctor has released you from their care. If it is your GP/Family Physician I would have thought they would refer you to a Haematologist for tests. PRV is caused by a gentic fault but is not usually inherited. There are 2 types of Polycythaemia,Primary and Secondary and a Haematologist would be able to test you to see if you had either. I was diagnosed with PRV 4 months ago and although my Haemoglobin was over 20, they paid more attention to my Haematocrit (HCT) levels, which were over 0.60. At my hospital, the normal range/scale for an Hb level is between 13-17 and HCT 0.40 - 0.50, so I was over. My red blood cells were way over too. They tested me also for the JAK2 Gene, which also came back postive. So there is a lot of tests to be done before confirming that you have PRV or Secondary Polycythaemia. PRV was reclassified as a Myeloproliferative Neoplasm in 2008 by the World Health Organisation. These are known as a "related group of blood cancers" however, before you scare yourself, PRV is a relatively benign condition and with proper treatment most people live a normal life and live for decades. Polycythaemia affects people differently so no one person is necessarily the same and whilst in some people the condition does progress over time to other disorders,(rare) there are many people in this forum who have had this disease 20/30+ years! The immediate issue should you have Polycythaemia will be to lower your blood levels as your blood becomes too thick and you are at risk of Deep Vein Thrombosis, which leads to, Stroke, Heart Attack, Pulmonary Embolisms. Having said all this, please do not panic as mentioned, you may not have Polycythaemia and if you do, like me, you will be well looked after and your symptoms controlled.
Let me know how you get on and if indeed you require further tests, I will try to help you through it.
Take care
Keith
lib00803 keith28441
Posted
Keith,
Thank you for all the information you gave me. I did make an appointment with a hemotologist and will be seeing him on August 5th. While I am not one to panic, I am very concerned and upset, to a degree. I feel like I should be doing something between now and August 5th, but really don't know what to do.
Drinking green tea X2 daily does lower all of my numbers so I will continue doing that. I have absolutely no energy, which concerns me. You are so very kind to tell me that you will help me deal with this. Really, that is what I am needing right now. I need someone that understands the disease from a patient's view. I have a great husband but he works many hours and is seldom home. I will post as I get more information. I can't thank you
enough for your support. I will do my best to return your kindness and provide support to uou. Right jow, I feel very emotional,
frightened and just unsure of anything. I suppose these are
normal feelings. Thanknyou, Keith. Your post has been very helpful, in many ways.
lib00803
Posted
Thank you, Ellen and Keith for your messages. Could one of you, or anyonr, explain the difference between primary and secondary? I'm certain that when I see the Dr on 8/5/16, he will provide a lot of information. I don't mind having blood work done and I've
donated blood before, with no problem. I guess it's a good thing that needles don't bother me, as I have a feeling I'm going to
have my share of "sticks" and "blood letting".. I'm simply anxious to get a firm diagnosis and get on the road to treatment. One
question I have been asked by the few friends I have told is
"Is a bone marrow transplant a cure for this disease" I haven't a clue. Obviously I need to become educated quickly. Thank
you so much for your support. I will try my best to offer the
same to you. ~ Lib
keith28441 lib00803
Posted
Hello Lib
Primary Polycythaemia is to do with a problem in the cells produced by the bone marrow it produces too many red blood cells, the most common type being polycythaemia rubra vera. It is a rare condition caused in 9/10 cases by a fault in the JAK2 gene. Secondary Polycythaemia is where too many red blood cells are produced as the result of an underlying condition. With PRV, Platelets and White Blood Cells can also be raised (as with me) although not in all cases, whereas with Secondary Polycythaemia, it is only the red blood cells that are ever elevated.
Secondary Polycythaemia can be caused by a number of underlying causes and whilst this can include Liver or Kidney tumours, it can also be caused by a number of non-malignant conditions including Cysts, sleep apnoea, Hypoxia (due to not enough oxygen reaching the body's tissues), this can be as a result of smoking, chronic obstructive pulmonary disease (COPD), narrowing of the arteries and would you believe even living at high altitudes can impact on your red blood cells as can dyhydration.
Some web sites are more accurate than others and some are just plain misleading. You can sometimes just scare yourself witless looking through them. I am not sure where you live but I am in the UK and I find the NHS website gives out clear and accurate information on Polycythaemia. You can google Polycythaemia Rubra Vera NHS and it should come up. You may be overseas such as the US, if so the Mayo Clinic website is pretty good as well.
Try not to worry, I know it’s easier said than done but wait until you have seen the specialist and you should know more. You may not have Polycythaemia, if you do, PRV can be managed and if it’s Secondary, there are as mentioned, a number of underlying reasons that can cause it.
Hope this helps
Keith