I did try to register with this site - for some reason it would not let me - so this message will end up as being from a Guest - Sorry about that.
Basically I need some info on Polycythemia (message is a bit long) again apologies in advance.
I have also posted part of this message to the Crohn's disease site - as part of my question is - could these two diseases be connected?
In the first instance?
How long could you have polycythemia without it being diagnosed? - also could it be missed being picked up from tests after a Heart Attack?
Why am I asking? - it would seem - I have been suffering many symptoms of this disease for a while and due to other complications - it has not been diagnosed OR the symptoms I had - have been put down to other conditions - for instance one being Crohn's disease since 19 - in addition to the Crohn's I contracted the Helicobacter Pylori bug - I have had joint or bone pain for a long time (treatment has been steroid injections) - the joint and bone problem - was attributed to a side effect of the Crohn's, I have suffered High Blood Pressure for a long time - I have had the itching, sweating, headache & tiredness etc. (but this was put down to the menopause) then to cap it all - I had a Heart Attack last year at age 52 (which was termed a silent MI as it did not show up on an ECG) this again was attributed to a malfunction of the Liver which they said - had produced high cholesterol levels (my cholesterol level was 8.4) result I had two blocked arteries. one at 85% the other at 70%
They performed angioplasty and fitted one stent to the 85% one - but said they could not stent the other as it would jeopardize the first stent?..
Recently - I started to feel very tired again & was continually sweating - to such an extent I never got a continues nights sleep and it was very troublesome at work - I teach ICT - and you can imagine what it was like trying to work in a room full of PC's in summer - when one is continually sweating profusely.
Basically I was lucky I suppose that I was working with an older lady - who on observing how I was perspiring - actually advised me to go get it checked out - as she pointed out - it was not normal and she did not believe it to be as a result of the Menopause - especially as I was taking HRT.
So I decided a visit back to the doctors - was my only solution - on running a complete blood count - it was found I had raised Red Cell Count & White Cell Count Increased Platelets plus increased blood volume? - whilst there my doctor asked me if my spleen hurt? This she also checked but did not explain the reason for it.............she ordered a second blood test - again Cell Counts were High and I was told they were Abnormal. At that point she asked me to go for a third test? whereby at this point I asked Why? - to be told by the doctor - she thought I had Polycythemia? And said if the count was still raised at the third test she would refer me to a haematologist.
When I enquired as to could my cell levels have been raised last year? (my blood was very thick - at the time of the M.I.) and could it have caused my Heart Attack? - my doctors reply was - funny you should ask that - your haemoglobin levels were raised last year?
Needless to say - the third test also came back raised and I was given a definite diagnosis of Polycythemia - she has also referred me to a haematologist - (I am waiting for an appointment) - I did ask my doctor for an explanation etc. at which point she flipped through a book on blood complaints and muttered under her breath that she did not think it was kidney or liver related - but said nothing else other than putting me on sick....................I have been prescribed no medication by my doctor for this polycythemia.
I did ask both the doctor and the Heart nurse at the practice should I continue to take Clopidergrel - (as I was told initially I should only take this for 12 months after the M.I.) - the reason for asking :-
I may be wrong - yet if I am understanding some of the articles correctly Clopidergrel is used as one of the treatments - for Polycythemia?
It really inspired me when the Heart nurse said she had never heard of Polycythemia - (but said she would check for me regards the clopidergrel) -
The reply from my doctor was she would contact the specialist who treated me for the Heart Attack as she was unsure - regards stopping the clopidergrel.................so far my doctor has not come back to me regards either continuing or stopping the clopidergrel?
The next message I got was via the receptionist - that the Heart nurse had spoken to some doctor (not the specialist who had treated the M.I. or my own doctor as I understood it from the receptionist)
Whoever this doctor was that the heart nurse spoke to? - he said I could stop taking Clopidergrel - at this point I am somewhat wary regards the advise on stopping clopidergrel based on some unknown doctors advice (who possibly has no clue regards my health background) or who may not be a specialist who deals with polycythemia
Perhaps I am being over cautious - BUT - I do not particularly want to stop taking a medication that is basically stopping my platelets sticking together - as I do not fancy either another Heart Attack or even the slightest possibility of the stent blocking.I was lucky last time regards the Heart Attack (I may not be as lucky again) - especially when it did not show up on the ECG - it was only discovered after the blood test showed raised Tronpin levels indicating I had, had an M.I. - (basically my daughter was told - if they did not perform angioplasty there and then - I would have a massive Heart Attack)
Anyhow - The impression I have got from both my doctor and the practice heart nurse (is they have not a clue what they are doing regards polycythemia - and that they are out of their depth with this disease)
One question you may be able to answer - WHY - if my doctor has now diagnosed this disease - was it not diagnosed earlier than now (especially at the time of the Heart Attack? - if my haemoglobin levels where raised?) - also what is my likely prognosis at this point - will they have left it too long to treat?
Having checked out Polycythemia on the net - I am more confused than ever? Basically - (is it a type of blood cancer?)
Incidentally when I had the Heart Attack last year - in A&E when they tried to draw my blood - it had the consistency of glue - and they had a great deal of difficulty getting a sample..................
I am also wondering - WHY - my thick blood last year did not raise any suspicion - especially if the haemoglobin level was also raised? (if I have read the info correctly from the internet) - thick blood is a typical symptom of Polycythemia.
I apologise for the length of this email - but could someone please advise
To have been diagnosed with Crohn's disease in my teens (which was rare when I was first diagnosed) and now this - which from what I have also read seems to be rare (or am I mistaken regards it being a rare complaint)..............anyhow would seem that when they dealt the pack for me - I got the joker cards...................which is why I am a bit peeved at the moment...............yes I do realise there are people worse off than me - so perhaps I should not complain.
To be able to get advice from someone who knows about this complaint would be most welcome...............because at the moment I am feeling very isolated regards the implications or possible outcome of this complaint.