Had routine blood test just over a year ago, went to get results & the practice nurse mentioned in passing that my red count was high and they needed to keep an eye on, come for another blood test in 3 months. 3 months another test & session with the nurse, red still high (17.4) if memory serves me correctly & first mention of PV but told not worry but come back in 3 months. So once again time passes get my results heamoglobin still moving up (17.5), told to come back in 6 months. Longest 6 months of my life pass and I go back and have my test, phone up for results and get told my gp wants to see me. (Wee bit worried now) can't see him for a week, go back and mentions that he's concerned about heamoglobin again and I need another test, but didn't say what (he doesn't encourage questions )
Phone up about results, told abnormal as expected please come in. Went today, fortunately it was a locum who actually asked me how I felt, explained I was tired all the time, itchy & had a pain in my leg. He then asked about family history (lost grandad to strokes at early age & mum to cancer).
He then explained about PV but said my test last week was jak test and it was negative, he examined my abdomen (spleen palpable apparently), then phoned haematology at hospital for advice as tests borderline & not all symptoms consistent with PV (by now I'm totally confused)
He then explains that other blood tests should have been done (liver function etc)
So have got to have them, but also ultrasound on spleen and an x-Ray
He was a great doc, but I'm still confused, have I got PV ? Should I be worried?
I'm a 48 year old male who has lived life to the full shall we say & am now concerned it's coming back to bite me.
Sorry for long post, started typing and it all poured out
I am in the same boat as you. Except my white blood cell has been high for 16 months and the Hemo. Tells me the same thing as your Doc. Come back in 3 months for another blood test. I am tired of it. It is a just sit and wait thing. I think I have m.p.d. but I am never told anything . don't worry just hang in there.
That is all we can do & whatever it is we have to except it.
Hello Gooner. . You should ask for an appt with a Haematologist assuming you aren't referred as a result of xray, ultrasound. . . On the face of it your early symptoms might be PV but you need an accurate diagnosis from an expert. And don't worry about your past living it large catching up with you if it does turn out to be PV as you can't change that - I doubt it will be owt to do with it - but you will have to adjust your lifestyle in the future to deal with the fatigue.
Anyway let's hope that you get some answers and it doesn't drag on as it already has for you. You need to take control of it if you keep getting the runaround.
Sorry to hear that you are having a frustrating time, if I was you I'd try to get a GP who listens and discusses with you as we can cope with most things if we are aware of possibilities and part of the discovery process. It sounds like the locum has got you going for the right tests to try to establish what is happening for you. I too think you should ask to be referred to a haematologist. But try not to panic if it is PV, we can live full and happy lives, I've had it for 27 years, work and live a busy life.
Firstly I would say don't worry even if it is PV. The main problem you will have is getting answers to your questions and concerns as I honestly believe no-one has all the answers yet!
I was diagnosed with PV 8 years ago and still feel fine - and do everything I want to do in life!!!
It's my Hematocrit levels that I (and my consultant) watch and he adjusts my medication (Hydroxycarbomide) if needed to keep them stable.
Anyway - I take the medication and have checkups every 16 weeks and if I am in Portugal where I visit for a few months at a time I have a blood test there and scan it over to him in the UK.
PV will NOT change my life and it shouldn't change yours!
Sorry this is so long winded - it's the first time I've posted on here too 😀
I was diagnosed with PV 6 years ago and I don't let it hold me back either. I see my brilliant haematologist every 5/6 weeks and have a venesection if necessary. Seeemples!
PV is treatable but not curable at the moment ( I suggest you ignore all internet ramblings except the wonderful MPNvoice.org.uk website) however, drug research is really rocketing along and massive inroads being made as we speak.
Lastly and most importantly, and this is important, ( not sure where you live) DEMAND to see a haematologist who specialises in MPN's. Claire Harrison at St Thomas's might be your first port of call, if you're more than 3 hours from London - personally I'd travel to Hong Kong for a one off appointment - you may like to find someone else.
I see Tim Somervaille at the Christie in Manchester. Where do you live Gooner?
Gp's are clueless ( that's why they're called general practitioners - they have a general smattering of knowledge in everything, mine told me to go and google polycythemia because he knew nothing about it can you believe) and not all haematologists are totally knowledgeable re MPN's. I moved from our local hospital in Cumbria to Manchester for this reason. Takes me 2 hours to get there but it's worth it.
It's your health, and you are entitled to go to a hospital of your choice.
Oh, one other thing, you might think about watching what you take into your body alcohol and food wise. We are what we eat!
Hope that helps.
Love
Louise
x
There's an MPN forum in London in July. Well worth going to if you feel like it.
See Maz's post below.
Hi,
I agree with others, don't panic, don't worry about the past catching up, this happens to the best of us, don't worry, but do ask to see a haemo and if you can see Prof Claire Harrison I would highly recommend her clinic at Guys, best decision I made to transfer from my local hospital but I can travel there by train from where I live with ease, but you can still get a second opinion from her, you are entitled to that, and to choose. Not everyone who has PV is Jak2 positive either, although granted most are.
You've come to a good place for advice and you may like to visit mpdvoice.org.uk for great information.. try not to google willy nilly as you can find all sorts of scare stories!
I don't necessarily agree that GPs are useless, but the 'General' bit does give a clue! I can only reinforce the advice that you find a good haematologist - mine is wonderful as are the whole of her division.
You say you have enjoyed life but don't say whether that includes smoking, the first thing I was told to do (and I mean told!) was to give up, which having had the mind concentrated by sitting around in the 'sunrise cancer' waiting room I did. I found it astonishingly easy and the money saved is phenomenal!
If you are JAK2 negative and you are a smoker, you may have secondary PV (I've done the research... you can tell!)
Either way, secondary or primary the other responses here should reassure you that even if it is a bloody nuisance it's manageable and liveable with.
Get a good haematologist and keep a record of your blood counts. I keep Haematocrit, Platelets, White count, Neutrophils and Haemoglobin. But then I'm retired with not much else to do!!
I've had PRV for ten years, and it's been quite a ride. DO get to a good hematologist for a proper diagnosis; it can save you life! Several on here have been extremely lucky and have been able to carry on with their lives, much the same as usual. I started out with many bloodlettings, and still had a pulmonary embolism, followed by a heart attack, and recently had a huge op'n to deal with two aneurisms (I think made worse by the PRV), also many symptoms. So don't play around with this. Get a clear diagnosis and then follow up with the proper meds, although even those are subject to scrutiny. Good research on line is a definite plus, such as at the Mayo Clinic in the U.S.
I am in Alberta, Canada.
Best wishes,
ABman
Hi all
Firstly thanks for all the lovely comments and supportive replies, apologies for not responding sooner it's been manic at work.
Well now for an update, have finally had all my blood tests etc and saw my gp this afternoon. Good news as such, he's confirmed that I have PV and is referring me to hospital, never thought I would see that as good news but at least I can now understand my symptoms and work with them.
He explained all about the illness and put my mind at rest, mentioned that I could do with losing a couple of pounds and assured me that it's not been caused by my old lifestyle so that's good. In fact overall he was a brilliant doctor.
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