My name is Julia and I am 46 and been referred to specialist for possibility of having polycythaemia
Posted , 6 users are following.
Hi everyone, I've now been sent to see a specialist with a possibility of having polycythaemia, I've been having symptoms for two years of dizziness, palpitations, itchy hands and legs, painfully joints, but the palpitations and headache has been the worsed I've kept thinking I'm going through the change and had blood test after blood test for this and that, the only thing that comes back abnormal is my high blood count and this has happened with five blood tests over a two year period, the last blood test showed my hemocrit levels at 61% and my haemoglobin I'm unsure but the doctor says my bloods have slowly risen, what was thought of been dehydration is now a concern, I see the specialist next week has anyone got advise for me it's all seems a bit scary? Could I of brought this on myself somehow? I'm a non smoker, I am overweight but eat healthy and exercise when I'm feeling okay and I do drink occasionally? Xx
0 likes, 17 replies
angela_o..o julia15874
Posted
Hello Julia. Firstly, try not to worry. Even if you do turn out to have polycythaemia it isn't the end of the world. And if you don't have it, well you have wasted a lot of valuable time!
If you are seeing a haematologist next week you will get an answer pretty soon. And then they will give you some guidance as to how to deal with it.
I was diagnosed with it this spring. I take a small aspirin once a day and go along to donate a pint of blood to the bin once a month. Apart from feeling sleepy towards the end of the month and just before the next donation I feel more or less as I used to.
Let us know how you get on.
julia15874 angela_o..o
Posted
Thank you I will let you know the outcome, in a way it will explain a lot over the last few years, last year I went skiing and was so poorly due to the altitude, which if my bloods are high it would make sence why, I did half a marathon in May and finished but afterwards I was so poorly with flu symptoms and exhaustion I had to stay in bed for a week, just thought I had over done it, then only last week I couldn't move my elbows they were so sore I thought again I'd done too much but it was both elbows and it disappeared as quickly as it came on, today it's my right hip and walking with a limp and all of this time I'm suffering with palpitations daily!! So in a way I would like some diagnosis, or it's a shrink next!! X
paul250360 julia15874
Posted
Hi Julia
l am a 56 year old from Australia. l was diagnosed with PRV when l was 30.
This condition hasn't stopped me from doing anything over 26 years. l have an aspirin a day and a 3 monthly venisection to reduce my red blood cell count.
l'm currently training for a 24 hour,100 km (63 mile) walk early next year for Oxfam and doing very long walks every weekend plus daily shorter walks. No ill effects whatsover.
l have every confidence that once you get rid of some red blood cells via venisections and maybe daily aspirin many of your symptoms will dissipate.
It seems strange from reading these discussions that so many people have long waits to get a diagnosis.
l had no symptoms except for higher than normal haemoglobin levels 26 years ago but had a diagnosis after a bone marrow biopsy within a couple of weeks. l was lucky that as l was a blood donor at the time that my higher haemoglobin levels prompted investigation otherwise there could have been a serious outcome potentially years later.
Tootsie2 paul250360
Posted
I have never heard of anyone having PRV without having to take Hydroxyurea pills...Never.
I can't believe that you were diagnosed with PRV
also, the life span of PRV is suppose to be only 15 to 20 years..
How lucky you are that you don't have to take Hydroxyurea, as it is like a poison drug.
Yes, I had phlebotomies when I was first diagnosed, but am now into the transfusions,,
How can you be so lucky?
paul250360 Tootsie2
Posted
It hasn't all been plain sailing - 6 years ago l had a major DVT following a basketball injury where l snapped my achilles tendon - the DVT ended up in my lungs (PRV exacerbated the chance of the DVT) and had a week in intensive care in a cardiac ward.
My take on life-span - generally people are diagnosed later in life and therefore average lifespan would be reduced in any case.
Not so sure about being 'lucky" - reckon l'm pretty unlucky to have PRV given the rarity of the condition.
l also believe the fitter you are the more likely you are to keep healthy. l walk a minimum of 80kms or 50 miles a week, do personal training one night per week. Have a 20mile walk this Sunday with my wife and neighbours !
l do enjoy a beer or two on the weekend and a nice steak occasionally. There isn't that much iron in meat.
Also l'd never heard of hydoxyurea until l joined this discussion group.
glenda2491 Tootsie2
Posted
glenda2491 Tootsie2
Posted
Sorry, I asked the wrong person, I should have asked you why you think hydroxyurea is poison? I started it in June> Thanks
glenda2491 paul250360
Posted
glenda2491 angela_o..o
Posted
angela_o..o glenda2491
Posted
Hello Glenda. No, I just take the aspirin and go for venesections once every six weeks or so. I turned 65 this summer and, just for that reason alone it seems, the consultants would dearly love to put me onto the pills. But I am resisting. I am an awkward old cuss. They try to scare me with what will happen to me if I don't take them. I accept that they are the experts and have vast experience of this illness but lots of factors, beside my being an awkward old cuss, make me plough my own furrow.
If you are having trouble with the pills don't suffer in silence. Tell them. They should be able to find some other, kinder form of treatment for you.
glenda2491 angela_o..o
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Tootsie2 julia15874
Posted
I had itchy skin, and had to have blood drained for quite a long time.
I am on Hydroxyurea pills, and am monitored by my Blood specialist.
I am now in my 21st year with polycythemia, and am still living...Very tired, but I am doing okay. I have had a few blood transfusions, as that is what happens after you have had this disease for years..
If there is anything you want to ask me, feel free to write me. My email address is ccarlson@nexicon,net. I live in Colborne, Ontario.
julia15874 Tootsie2
Posted
Thank you, I'll know more on Thursday when I see the specialist, it's strange one minute I feel fine the next shocking! The thing that's got to me is if I've got polycythaemia and my blood tests (I've had five all higher than normal) why has it taken the doctor over two years to send me to see a blood doctor!! If they had been low I'd of seen one after two probably, But I suppose I shouldn't think about that only it's rolling is that ball now, I'll let you know once I've spoken to him on Thursday and hopefully he's got a simpler diagnosis than polycythaemia! As its seem a very complex illness to maintain. X
julia15874
Posted
I'm actually thinking I'm possibly okay as I've asked for my blood results today and looked at them in fine detail, I've all the symptoms so I'm either in the early stages or I'm fine, my haemoglobin, Haematocrit and blood cells are all slightly high, but no where in the region of some of you guys, so when Thursday comes I'm going to show the blood result to him. X
jessie2150 julia15874
Posted
Hi julia. Are you in the UK? As you have your blood results try googling NICE guidelines on polycythaemia. I found that site informative on investigations/ diagnosis etc (not that I think you should self-diagnose !! I think it's meant for doctors really).
Best of luck, let us know how your consultation with the haemotologist goes. jessie