TRYING TO FIGURE OUT IF ITS POLYCYTHAEMIA OR PV-UPDATE 2/7/2013

Hi all, just a quick recap, FBC done on 9/4/13

Haemoglobin 17.0 (11.5-16.0)

Packed cell volume 0.51 (0.37-0.47)

Basophils 0.11 10*9L (<0.1)

written on the top of lab results were to speak to dr and need retesting

next test on 16/4/13

Haemoglobin 15.5

packed cell volume 0.47

basophils 0.04

written on top of lab results: polycythaemia

why would the lab put polycythaemia when my results are now within the ref range ?

I do smoke between 15-20 a day, could that be the cause ?

I do not know if its Polycythaemia or PV, I do understand the difference after reading up about both disorders. I saw the dr in May and she said everything was fine, so I am still no further getting a diagnosis. My next dr's appt is 2nd July.

Is it a long winded thing getting diagnosed ?

I have an under active thyroid, asthma, I am on ferrous sulphate as my ferritin level is 30 (10.0-300) and have suffered severe night sweats for many years. sitting out in this warm weather is making me come out in heat spots and itching, plus pain in my feet.

Is this PV related ?

thanks in advance

2/7/2013

Hi again everyone

well I went to speak to my doctor re the Polycythaemia, he has told me to come off my iron tablet to see if that alters the haemoglobin, packed cell etc. I have to go back in four weeks for bloods doing then take it from there but whilst I was there he showed me a screenshot of all my blood results and I noticed that my platelets were 481 last sept, now I am no expert but I don't think taking an iron supplement would effect my platelet levels.

I asked him for a printout of the results and he said he would but didn't know how to do it ( Ive never heard anything so stupid in all my life).

Think I may need to get a subject access request form and get all my blood results but fear the doctors aren't going to be happy at that.

So I am still no further forward in my diagnosis and still worrying, I hope you are all doing as well as can be expected, take care Mistymoo

36 Replies

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  • Hi, as far as I understand PV is the bone marrow over-producing red blood cells and polycythaemia (secondary) is an overproduction of red blood cells caused by some other reason. The MPD Voice website will give you clear information about this. But I think you should go back to your GP and ask for a referral to a haematologist to get a proper diagnosis. You shouldnt be left guessing. I have PV and suffer night sweats, fatigue, itching, bone pain but these are symptoms of other conditions too so you must get advice from the experts. If you have polycythaemia or PV you will get lots of support and information from this forum and the MPD Voice website. Best wishes, take care Aime.

  • Thanks for the reply Aime, the waiting and not knowing is the worst thing, I keep telling myself that if it was serious then surely the doctor would have mentioned it, either way its a serious condition and I do feel I should be seeing a haematologist.

  • hi mistymoo= you should be referred to a haematologist, who can formally diagnose the condition- my haem initially ordered a blood test looking for the JAK2 gene which is the official diagosis of polycythaemia vera rubra, and an ultrasound of my spleen and liver- both of thich tend to be enlarged. once diagnosis is confirmed he will manage the condition. the key is to take control and understand your condition - and the mpn network at the mayo clinic is a brilliant source of up to date information and easily accessed, cheers karteeka

  • Hi Karteeka, I will ask for a referral to a haemo and will look on the site you mentioned, many thanks

  • Hi mistymoo - I totally understand that not knowing is worse. I went through from January to about July last year before I started getting a diagnosis (and months before that of feeling fatigued which was put down to depression)! I am Jak2 negative which is unusual with PV so it can vary and that's why you need to go back to your GP, say you are not happy and want to find out what is going on. We all have differences and similarities with our symptoms so you really must go back to your GP and ask for a referral to a haematologist. If you want more info on the differences between PV and secondary polycythaemia, go to the MPD Voice website. You can also ask questions of the professionals through Maz who is so helpful. Do this and you will feel better. If you have one of the types of polycythemia you will be closely monitored. Kind regards Aime

  • Hi Aime

    I too am JAK2 and EXON12 negative and despite numerous investigations am no further forward.

    Hi Mistymoo

    There are certain diagnostic pathways that should be followed and a GP cannot arrange most of the required tests. You should insist upon referral to a Haemotologist immediately these are all rare conditions and not well understood by GP's.

    Firstly you should be tested for JAK2 (95%) of patients with PV have this mutation. Beyond this is it will be symptom driven.

    Test for hypoxia as a smoker and also lung function would be prominent if JAK2 negative.

    Other tests for an enlarged spleen can allow a diagnosis of PV without the presence of JAK2 or EXON12.

    There is a lot of misunderstanding of Polycythaemia Vera and other names such as Erythrocytosis and often terms are often used interchangeably. There are lots of sites that can help, the US site m.cancer.gov/topics/treatme... can be helpful.

  • Hi ILC72, think I best try and get in to see the dr before 2nd July as its another three weeks of uncertainty, I also forgot to mention that my packed cell was out of range last sept when I was at my old doctors. Not sure why the dr's seem to be waiting, its very frustrating, I shall have a look on the site you mentioned, I am aware that PV is a rare blood cancer, I think the not knowing is worse than a diagnosis, many thanks for your reply

  • Hi again Aime, I have read up lots about the two different conditions, either way something needs to be put in place, be it aspirin or whatever, the only thing that worries me is the risk of clots etc as my mum died aged 49 of a blood clot, so I am concerned, I think once I get a proper diagnosis I can then learn to live with it or change my lifestyle. again many thanks

  • Hi Mistymoo

    Absolutely you need to be referred to a Consultant ASAP, your Hematocrit or Packed Cell Volume is the most important value. Target values vary but if >0.55 you should seek specialist advice immediately as you are at much higher risk.

    Mine was 0.63 at first presentation, it may not sound much but it is a worlds difference in medicine. Not all scales are linear and even small changes can be significant.

    Depending on diagnosis target value is 0.45-0.5.

    Your Doctor should have already picked this up and referred you on to a Haemotologist for further diagnosis. Don't wait and don't take no for an answer. Prognosis without treatment is poor but luckily treatment can give you many years of life.

    PS I wasn't judging on the smoking so wouldn't worry, it just affects interpretation of symptoms on the treatment pathway.

  • Hi ilc72, I know you wasn't judging me on smoking but I also know that you can have polycythaemia due to smoking, feel like I may have brought this on myself. thanks again for taking the time to reply, so looking at my results you feel its worthy of further investigation ? I will update you all as and when I get some answers.

  • Hi Mistymoo, sorry to hear about your mum. Yes what we have is classed as a blood cancer but as far as I am aware if we are closely monitored and treated we can expect a normal life expectancy - you always hear the "bad" stories and not the good ones where folk carry on to live to a ripe old age. But that is why it is essential you get a proper diagnosis as soon as you can because worrying will not do you any good either. Just remember you will find a lot of friends on this forum who will support you. Kind regards Aime

  • Thanks Aime, I have researched this even before diagnosis, so am fully aware of the implications, if it turns out to be polycythaemia rather than PV am I still ok to use this site ? as its more for MPD's

  • Hi Mistymoo

    You certainly haven't brought it on yourself, so try and be positive if you can. It is not classified as a blood cancer, it is a blood cancer, but one that can be managed through treatment.

    For it to be caused by smoking, you'd need to be hypoxic and suffer from hypoxia, unless you already have serious lung and breathing problems this would not be the cause.

    What is important is not the exact diagnosis, but the symptoms and how they present. I don't have an identified mutation yet despite 12 months of tests no exaxt diagnosis has been given with all causes of Secondary Polycythemia eliminated.

    The nearest is an Unclassified Myeloproliferative Neoplasm for me.

    Sadly mine is starting to prove more resistant than when first diagnosed.

  • Hi ilc72, I just thought that if I have secondary polycythaemia then it would most likely be due to smoking, although I wouldn't say I am a heavy smoker, as far as I am aware I don't have Hypoxia or any lung related problems either. To be honest the more research I do the more convinced that I have PV, I am constantly exhausted despite sleeping 10-11 hours a night. If you don't have the JAK 2 mutation then how can PV be diagnosed, is it by bone marrow biopsy or just blood results ?

  • Omg. someone else with unclassified. Up to now I knew of no-one else and no-one to relate to on here.. I was diagnosed with MPD Jak 2 Pos 2 year ago. I have been told its Unclassifiable and no-one could tell me what that meant. I was always told my bloods were within the acceptable range.

    Heaemoglobin in May 158

    Heamatopcrit 0.449

    Bas count .10

    Now maybe I shouldn't have done the google thing, but Unclassifiable is classed as having a little bit of all the MPD's.

    This scared the hell of of me, but now I have accepted whats to be will be.

    I am not on any Meds, but have all the classic symptoms, Fatigue, bone pain, chronic itching, headaches and more. .

    Had bone marrow biopsy at star and recent scan and spleen is fine. Everyone say's I look great but inside I feel like rubbish..so frustrating.

    Anne .

  • Hi Anne, isn't it awful being in limbo, if we knew what was wrong then we could prepare for changes to our lifestyle, I am like you, I look well but feel pants, lol

    I endured sitting in the sun last week just to get some colour in my cheeks, now everyone is saying you look well. They haven't got a clue.

  • No they haven't mistymoo.

    I don't think even my family understand. My husband to a degree does, but he makes jokes about it all. I think its his way of coping, but it doesn't help. I have to remind him sometimes what I have and he just says, oh don't worry, I'll be gone long before you. Eh! not what I want to hear either. My children are of the thoughts that mums okay, because she has not lost her hair, is on no treatment and is not in a cancer hospital. Arrggg. I cold just shake them all sometimes.

  • Hi

    My name is Stan and I am Jak2 positive and was diagnosed with primary polycythaemia vera rubra I would say that you have been given good advise see a haematologist and they will test you for this condition and other possible blood disorders.

    I am going to give you advice that you don't want. if you have secondary polycythaemia it is often attributed to lifestyle and diseases like Asthma, CODP, Smoking ect I would strongly advise you to stop smoking and see if your blood counts change as the poisons are cleared from your system.

    Please not I smoked and I know that stopping is not easy so I wish you well.

    if I can be of any further help please contact me

    Hope it all terns out well for you

    Stan

  • Hi Stan, thanks for your advice I am currently trying to cut down and am having about 15 cigs a day, I understand what your saying, I am affraid of the dr just dismissing it due to me smoking, and they wouldn't know which Polycythaemia it is anyway. I also have agoraphobia and too be fair I do enjoy a ciggie but I am going to try and do the best I can, I have to. Many thanks for your reply

  • Hi

    Reading the replies I get the impression I have hit a raw nerve with one or two people over the issue of the smoking. The facts as I understand it is that the question was

    "TRYING TO FIGURE OUT IF ITS POLYCYTHAEMIA OR PV" and what I was trying to say is that giving up cigarettes will help however! I myself was a very heavy smoker 15years ago and you are right! it is not easy to stop especially in times of grate stress and illness. So if I seemed patronizing I was not meaning too.

    I am luck compared to many, my GP diagnosed my symptoms and sent me to a haematologist for full diagnoses and treatment. I had no Idea what PRIMARY POLYCYTHAEMIA was one month and the next I was diagnosed with it. This diagnosis to only the time for the results of a Jak2 test. I have cared out a little research and I have a very basic understanding of this condition. I had been ill with varying degree of symptoms for a long time prior to the diagnoses.

    What I did when I saw the haematologist was right down on paper the questions I had for the doctor and I asked him when I had my appointment, this means with a little luck you wont leave your appointment with unanswered questions. both my GP and my haematologist are very good and understanding This has helped me a lot.

    good luck and keep in contact I wish you well.

    All the best Stan

  • thank you for your advice Stan, I shall make a lisT of questions before I see my GP.

  • Hi Stan

    As you are JAK2 positive then you'd have not experienced the diagnostic pathway since you had your answer at the first step. As discussed if it were as a result of smoking then (i.e. Hypoxia) then a patient would need to be suffering COPD of moderate to severe and I'm not sure Asthma is relevant at all.

    Hi Mistymoo

    Of course giving up smoking can be of benefit, but after diagnosis of a serious illness and full of worry its easier said than done. I was only able to give up after losing my partner in 2009 to lung cancer. I don't personally drink which made it harder.

    Take care of your mental health as well as physical health, my diagnosis led to a severe depressive episode and am only just coming through it with the help of treatment and therapy.

    Hope this helps...

  • Hi ilc72, thanks for your comments, I know only too well about depression, been there got the t shirt and having agoraphobia doesn't help at all, just hope I can get to the haematologist. I will have to. kind regards mistymoo

  • Hi guys, I am Jak2 Negative, have definitely got PV which was confirmed by a blood cell mass test in nuclear med dept. I don't and never have smoked. I have had ct scan, ultrasound, etc and no known reason has been found for secondary polycythemia so I have been given the diagnosis of PV, cause unknown. I think the most important thing in all these conversations is that you seek medical advice from a haematologist and see your GP about how you are feeling. I ended up going on anti-anxiety tablets (setraline) because at the same time as going through all the tests and worry for PV both my mum and dad died. The tablets have really helped me cope with life and see things in a better perspective which I know is really hard to do when you are not feeling great, are worried sick, etc. As I took each step to get "me" sorted out, I started feeling a bit better each time so do start by seeing your GP again. Remember we are all here to support one another - we understand. Regards Aime

  • Hi Aime

    Interesting to find someone else who is JAK2 negative with no identifiable secondary cause. I haven't had the nuclear medicine test, but am seeing Haemotologist next week. Not sure if you have a buddy, but I'd like to offer to buddy with you as they haven't found someone as yet!

    I find the uncertainty the hardest thing to deal with!

    Take care...

  • Hi ilc72, Would be delighted to have you as buddy not got one yet. I think we are in the 5% who are Jak2 negative plus in the 1-2 per 100,000 who have an MPD. Aren't we lucky!!! The nuclear med test was no problem. Radio active things were injected into a vein, then blood tests taken at 10 and 20 minute intervals. Had to stay sitting all the time so as not to alter blood pressure. I had no ill effects from this. My result came back that the amount of red blood cells was top heavy compared with the rest of my blood make-up. I have since had an ultrasound of chest and stomach and ct body scan but luckily everything has come back ok so far.

    I totally understand about what you are saying - the uncertainty is hard to deal with. It is because you don't know what is wrong with you and even if you try hard not to, you imagine what it could be - we are all human after all!!

    As others have said it is annoying to be told you are looking well (which I quite often do as I work outside and am reasonably tanned) when you can be feeling absolutely awful.

    My haematologist has been a lo better since I have shown that I read up on PV and I am ready with my list of questions.

    Do we need to do anything to be buddies or just communicate via this forum?

    Kind regards, Aime

  • Hi Aime

    I sent a note to Maz requesting a buddy through the site links, maybe send a note to her, or alternatively my email is icliffor@hotmail.com.

    I know what you mean about looking OK, luckily I have a good GP who is understanding. I have been given medical retirement by my employer, although it was a long fight, so am able to manage energy levels better now.

    What frequency are your venesections? Mine are now every two weeks so may need to switch to alternative options.

  • thanks to you all for your advice and support, I am feeling exhausted today, not sure if its worry or the illness, mornings seem to be the worst for tiredness, yet I am sleeping 10 hours a night, I hope you are all as well as can be, take care mistymoo

  • Hi mistymoo

    It is probably a mixture of worry and the illness. The two weeks before I am due a venesection, I sleep 10/12 hours every night, sleep 2-3 hours when I come home from work in the evening, wake up shattered and am sitting with my head in my hands at work feeling sick and fatigued - awful. Two days after the venesection I tend to start feeling more alive but if I overdo it I suffer the next day.

    Have your rest, drink plenty fluids and do speak to your GP about how worried, depressed, etc you are. Kind regards Aime

  • thanks Aime, I just laid on the sofa all afternoon yesterday and felt better for it, I shall keep you all informed on my progress but it might be a while as I don't see dr till 2nd July, I could get in before then but I didnt like two of the drs I saw before.lol

  • Hi ilc72

    Sorry couldn't reply direct to your reply above - not sure why not. I will contact Maz re buddy. I am lucky still - my venesections are once every 3-4 months at the moment but platelets were creeping up so we will see what happens. Take care Aime

  • Hi All, well I'm still reading up about PV and secondary polycythaemia, I just wondered if taking one iron tablet a day (ferrous sulphate) has caused my haemoglobin and PCV to show a falsely elevated total, any ideas anyone ? thanks

  • Hi mistymoo, I know we are not supposed to take iron tablets but not sure how badly this affects levels. Best ask the doc asap to find out. Take care Aime x

  • thanks Aime, Ive been trying to search the internet but haven't found any information, I'm still looking though. I don't see the dr for another two weeks which is frustrating. take care

  • just been back to my doctor today, been off ferrous sulphate for a month and my HB is 16.5 and PCV 0.49, the doctor said the bloods are still a little high but that I don't have Polycythaemia (not sure how he is so certain) ! He said I am looking for problems that aren't there even though he still wants to monitor my blood levels. I mentioned the night sweats and I just broke down in tears as I felt he wasn't listening to me, he said I think its mental health issues, at that point I left his room, I will be changing Dr's shortly. Maybe I am being paranoid but I am 44 now and I lost my mum to a blood clot when she was 49, I feel very frustrated. sorry for the moan. :(

  • Hey Mistymoo - looking back through this line you began, it still appears that you haven't yet been able to see a haematologist - is that correct ? If that is the case - and as your g.p. seems to be as helpful and sympathetic as a £art in a thunderstorm - once you have changed g.p.'s I'd simply but politely insist on a referral to a haematologist. You've gone a minimum of two months now and are no further forward and I for one would want some peace of mind; if you're then told by the haem. you're clear - great. If not, you'll be put on a monitored path and have a somewhat clearer idea of the way forward..... Good luck with your journey ;-)

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