Confused, any advice please
Posted , 7 users are following.
Hi, found this website a few weeks ago after coming away from my doctors being told i have a increased HB 162 and PCV 51 which apprently has been elevated since 2012 when i joined the surgery) after going back and having another set of bloods and JAK2 test my doctor said that she would refer me to a haemotoligist. I have since had a letter from the hospital that although my HB and PCV are elevated that my JAK2 has come back normal that they feel that my Polycythemia is secondry and apparent and because i have suffered with high blood pressure (for no reason ) and i smoke about 10 cigarettes a day say they cant offer me any treatment so have bascially refused to see me. I have for a long while suffered with tiredness and bone and joint pain( diagnosed with Fibromyalgia) itchy painful hands and feet when they get hot, i also have had other symptoms which would also fit with Polythcemia. I feel really stupid now after looking into this and feeling slightly concerned to be told they obviously arent interested.Any ideas`s should i put up and shut up and not bother or push a bit further .
Thank you in advance
0 likes, 18 replies
bill71415 vanessa31033
Posted
Hi Vanessa, my understanding is that, if you do not have polycythemia VERA but have it secondary, it is not that your bone marrow is producing too many red blood cells but that your body (spleen possibly) is not processing them properly or efficiently. It was not clear from your post whether you did see a hemotologist, but that should certainly be done. He/She should be able to recommend some treatment for the high blood count, although it may not be the same as those of us with poly vera. I'm sure others here can provide more information on options for you. Good luck.
Bill
vanessa31033 bill71415
Posted
Vanessa
Chippenham vanessa31033
Posted
vanessa31033 Chippenham
Posted
peter98873 vanessa31033
Posted
From what you have explained I feel you should really get the opinion of a haematologist to assess your situation. PV is not a disorder to ignore and if you are diagnosed with the disease, will certainly need medical supervision. It is a serious matter and most certainly cannot be put on the back burner. Is it because you smoke that has caused this decision by the hospital? At least go back to your doctor and discuss matters with her and perhaps ask her to promote your requirements and get things moving. If it does not prove to be PV then you should be delighted. On the other hand if the the diagnosis proves positive you will need treatment. Be firm.
If it is considered secondary PV it does not alter the situation. Good luck.
Peter.
vanessa31033 peter98873
Posted
Thankyou Peter, I was actually in tears when the long awaited letter that i hope for came thinking it was an appointment from my doctors referal to the haemotoligist only to open it and see that the haemotologist wouldn`t see me because the jak2 had come back negative and that by letter diagnosed me with apparent & secondary.......
peter98873 vanessa31033
Posted
You will see if you look at previous postings on this site that PV can be a very variable disorder and much confusion arises from the symptoms people suffer. You can always seek a second opinion from a qualified doctor if you cannot take this further at this time, or referral to another hospital if you are in UK. Quite simply, you need to know what is wrong with you particularly with the symptoms you suffer. Maybe ceasing smoking will help but at least you should be advised and checked professionally. I can understand your feelings here. Perhaps a friend could also attend any appointments you may
receive. JAK2 is the gene diagnosed at the heart of PV and is generally associated with being born with a defect of this gene. Many have this defect and others do not, that is basically what lies behind your conundrum. It shows up by having blood tests as you seem to have done. It is a very rare disease not understood by a great many people and indeed medics. A Haematologist is the expert. You deserve an honest opinion.
Peter.
Chippenham vanessa31033
Posted
Vanessa - I agree with Peter, this diagnosis cannot be ignored just because it is secondary PV. The results and symptoms can still be bad and in need of treatment, regardless of the cause. I fired my first hemotologist because he wanted to "wait a year and have me come back". He also dismissed my condition as caused by sleep apnea until he got the Jak-2 results back. I found that not all hemotologists understand the disease either since it is relatively rare. If you are able in your health care system to pick a doctor, I would look for one that specializes in the disease. There are a few in the U.S. (mostly at research or cancer hospitals), but I don't know about the U.K.
- Chip
keith28441 vanessa31033
Posted
Hi Vanessa
There are many conditions that can cause Secondary and/or Apparent Polycythaemia.
Apparent polycythaemia is where your red cell count is normal, but you have a reduced amount of a fluid called plasma in your blood, making it thicker.
The types of conditions that can cause these symptoms are being overweight, smoking, drinking excessive amounts of alcohol or taking certain medications such as diuretics.
A similar condition that's referred to as relative polycythaemia can also occur as a result of dehydration. Apparent polycythaemia may improve if the underlying cause is identified and managed. Smoking could be a factor, but I am no Doctor.
Secondary polycythaemia is where an underlying condition causes more erythropoietin to be produced. This is a hormone produced by the kidneys that stimulates the bone marrow cells to produce red blood cells. Conditions that can cause secondary polycythaemia include: chronic obstructive pulmonary disease (COPD) and even sleep apnoea as these can cause an increase in erythropoietin, due to not enough oxygen reaching the body's tissues. Another name for this is Hypoxia. Hypoxia/COPD can also be caused by long term effects of smoking. There are many other possible conditions that can cause secondary polycythaemia Vanessa including would you believe living at high altitudes. I would ask your Doctor as to why the Haematologist/Hospital is refusing to see you and ask her to further explain to you what she and possibly the Haematologist believes is causing your secondary polycythaemia. Your post suggests that perhaps the Haematologist believes it’s caused by smoking and having high blood pressure but your Doctor needs to at least confirm this (or not) and advise you on the best course of action going forward.
Hope the above helps.
Take care
Keith
vanessa31033 keith28441
Posted
Thank you for your reply, i have re-read the letter from the haematologist and basically because i have had borderline high hb 162 and pcv 51 longstanding at least for the last five years and jak2 neg which for her excludes primary polycythemia.I have reasons for secondary polycythemia ie smoking ?? and reasons for relative or spurious due to reduction in plasma volume.she feels that polycythemia of this degree does not need treating and and she also has no management to offer for the above.................. the end
I feel a little confused as to my next steps apart from obviuosly giving up the few cigarettes i do smoke. I am on pills for my blood pressure which again i`ve had for 20 plus years but doctors never found a cause just treated.
Guess back to the GP, but they don`t fill me with confidence.
Vanessa
keith28441 vanessa31033
Posted
I feel for you. Always remember though that you know your body better than anyone else and whilst you or I for that matter are not Doctor’s we can understand when something is not quite right in ourselves. Should you experience any escalation of symptoms associated with polycythaemia, then head straight back to your Doctor. Stay strong, you will always receive plenty of encouragement and support on this forum.
Kind regards
Keith
justin23294 vanessa31033
Posted
I don't blame the dr's. You are your worst enemy. First .Stop smoking! Maybe you will fell better and maybe the the doctors will see you.
bill71415 justin23294
Posted
She already said she knows she has to give up smoking, but its not as easy as you might think, and a doctor shouldn't refuse to see her because of it!
Bill
ellen68007 vanessa31033
Posted
Ellen
vanessa31033 ellen68007
Posted
I will go back to GP but dont hold out much hope as i get the gist that they all seem to not be interested because they feel its linked to smoking...... and maybe it is ? personally i have never been a heavy smoker but i know its time to give up. maybe then they will bother to look.Thank you for sharing your story with me, you are all most helpful .
peter98873 vanessa31033
Posted
Whether your medics are right or wrong you deserve to be treated with a little sympathy and compassion. Take someone with you for support when you attend your next visit and put any questions to the doctor firmly. We all know smoking is not to be encouraged, its effects are now well publicised but it should not be used as an argument not to be open with a patient. It would be interesting to know why the medics are so unco-operative as what you need is an accurate diagnosis rather than treatment, that is for later.
Peter.