Could I have PV?

Ah, progress I read.  Just hope everything stay well for you.  Once the Haematologists are involved I expect you will find things can move along quite quickly.   Wishing you a good result.

Peter.

Thank you Peter!

I have been laid low for the past 48 hours with a blinding headache, nausea and stomach pains so took to my bed with paracetamol and a hot wheat bag.  

This is most unusual for me as I am very much a stoical 'just get on with it' kind of person.  

I will report as soon as I have a Haematology appointment but have been told not to hold my breath!  

Tilly

The problem with PV is that it can mimic all sorts of complaints, especially if your immune system is a bit low.  There always appears to be a bug of some description doing the rounds so if things do not improve maybe you should have a word with your GP.  What you are suffering has already affected people in my locality most of which cleared after a few days rest and DIY medicine.  Nevertheless don't take any chances if it persists. Wish you well.

Peter.

Hello Peter,

I am relieved to say that I am over whatever bug I have had and so thankful that the blinding headache has gone.  

As you indicated, there are  many bugs going around and it was probably just one of those things!

Now, I just have to be patient until I get to an appointment with a Haematologist.  I am told that it is likely to be later rather than sooner so I won't hold my breath!

Tilly

 

Hi Tilly,

Yes, these bugs are far too often and can cause quite some discomfort.  Anyway all's well that ends well and let us hope you get your appointment soon.  The holiday season is upon us so that won't improve things.   Be interested to, know your outcome in due course.  Keep well.

Peter.

Hi Peter,

I will, of course, let you know how things go.

I have my fingers crossed that there will be an explanation for my bloods which doesn't involve PV.

Tilly

Hi Everyone,

Amazingly, despite there being a long waiting list, I have an appointment with a Haematologist next week.

I am surprised that I wasn't asked fo have  further blood tests in advance so that they would be available for the consultation.

Can anyone remember what happened on the first visit?

Wish me luck that my last bloods were just a fluke!

Tilly

 

Hi Tilly,

The usual procedure is that when you attend the hospital you will, once booked in, be seen by a Haematology nurse who will take blood samples which are then tested for the Haematologists purposes.

This will enable a diagnosis to be made.  These tests can be very quick with modern equipment but might take up to half an hour otherwise.    The Haematologist will have these test results when you visit the consultation.  Probably there may be other simple tests e.g. weight, height etc. as the treatment if given, can depend a great deal on these too.  Everything should be straightforward.  Good luck.

Peter.

 

Thank Peter,

Your knowledge and experience are so valuable to this forum.  This state of limbo is nerve racking but, of course, you and the others have all been through this. 

I just want to know why my Haemaglobin, Haematocrit, Basophil and Urea are so high.  If not Polycythaemia, then what?

I hope it isn't PV but, if it is, I know that I will have this forum.

Tilly

My hemo is very low. Smetimes in the blood transfusion area.

Does not sound like PV. Blood test should help determine PV.

Of course I cannot get a prognosis from my doctor. The outcome is very iffy sooooo we wait.

GOD BLESS

Margo

Hi Tilly,

Yes, everybody goes through the 'procedure' initially and most find it difficult to come to terms with.

Some 20 years ago when I was first diagnosed with PV it was very much an unknown quantity to both medics and patients.  Much has been learned since and this is ongoing.  As far as your readings are concerned, the sensible thing to do now is just to wait a little until your tests are completed and a diagnosis made available.   Your symptoms and prognosis can vary extensively and needs the expert attention of your haematologist who will advise you according to your individual results.  PV symptoms often apply to other complaints too so conjecture on this point is unwise.   Try to relax and not let your mind run wild on this.  A negative result for PV can only be good.  Good wishes.

Peter.

Hello Margo,

If your doctor is unable to diagnose your symptoms then you need to be referred to a Haematologist (if you haven't already) for the necessary blood tests to be carried out.  There is no other way for a general doctor is unlikely to be qualified sufficiently to make such an accurate diagnosis as required with PV.

Let us hope you do not have this disorder, it is for life otherwise.  Good luck.

Peter.

Hi Tilly,

I try to rely on known facts and experience when communicating with others on this forum.  Good to know that it is appreciated.    I feel that giving unsubstantiated advice on such a serious subject as PV etc is not worthwhile and can mislead people. A also do my best to avoid conjecture as this can also be unhelpful.   I have knowingly suffered from PV etc for some twenty years now, but realise I was affected years earlier than this without realising what the symptoms I was getting really meant.   At this time little was known about the condition and I simply made it mt business to find out about it.

Hi Tilly,

Somehow my message became disentangled and you have an unfinished offering and another in clarification.  Sorry for any inconvenience.  Good luck.

Peter.

Hello Margo,

I agree that it is a very frustrating process and not that easy to get to a Haematologist.  Are you in the UK?  You can ask for a referral but, for some reason, GPs are reluctant to make that referral.

I have no idea if I do, or do not, have PV.  I just want an answer to my seemingly high blood levels.

I know nothing so can't comment on your symptoms apart from wishing you luck with getting to a Haematologist and getting well.  

Peter is the guru on this forum so do take his advice.

All the best,

Tilly

 

Hi Peter,

I don't envy you the years you spent wondering why you didn't feel well and had unexplained symptoms.  

Thankfully, medical science has moved on and there is a better recognition of PV.  We are also benefitting from your experience which is a great comfort to those of us completely bewildered by this process.

I presume that I will get answers when I see the Haematologist next week or will I have to wait?

I want to ask three questions:

1. With high Haematocrit and Haemoglobin, am I in danger of Heart Attack and/or Stroke?

2. If I don't have PV, what is wrong with me?

3. If I test negative for the JAK2 mutation, could I still have PV or do I have something else?

Here's hoping I get some answers!

Tilly

Hello Tilly,Thanks for your response.  To answer your question about JAK2 mutation.  One gets this mutation when the basic JAK cell is initially formed in two parts.  Hence the word allele.  One part of the cell remains normal and the abnormal part is referred to as the allele burden and JAK2 is described as the abnormal part of the cell.  So if you are not diagnosed with the mutation then you may still have a basic form of PV that is termed JAK1 but this is far less serious than JAK2.  It is possible for treatments for JAK1 to eliminate the disorder.  JAK2 is far more serious and requires extended treatment and may progress into other related disorders of this type (ET and MF).  The three diseases are contained within the medical group Myelo Proliferative Neuroplasms.  There is currently no known cure for these disorders but there are effective treatments, one of which I now take, which can contain the illness.  My blood tests are now back to normal but it has taken a long time with ups and downs en-route.  These MPN's are of a serious nature and very rare indeed.  Research continues to find a permanent cure and new drugs become available frequently.  MPN's are all about the blood and the oxygen level within the body.  PV is a result of the bone marrow overproducing red blood cells and the effects this can bring, usually with an incorrect supply of oxygen.   If you are not receiving a correct blood supply to your heart, lungs etc this could be caused by other different disorders.   This is why your haematology tests are so important, not just to diagnose but to eliminate PV as the cause.  I will be very surprised if you do not have the answers once you have seen the consultant.   Whatever the outcome, you should be informed.

Heart attacks and strokes are something we all have to bear in mind but fortunately these tend to be rare.  I have no personal experience of any PV patient suffering these complaints.  Perhaps others will know differently.   Stay cool and just enjoy life.  Good luck.

Peter.

 

 

Hello Peter and all,

I am just updating to say that I have now seen a Haematologist on the NHS.  He was super and I felt very confident in him which is a huge bonus!

He took me through all the possibilities of the results of my blood tests and, as you, Peter have pointed out, the blood test results don't automatically lead to a diagnosis of PV.

I have had a physical  examination, an armful of blood taken and see that one test is for JAK2.  I have had a chest x-ray - no idea why - and will have an MRI scan in due course.

I have been prescribed aspirin, one a day.

I think the Haematologist has been most thorough  and I am grateful.

I am hopeful that some other reason will be found but must admit a certain nervousness waiting for the results.

Whatever the outcome, I will post the result.

Tilly

 

Hello Tilly,

Thanks for your information and results so far.  You now realise the importance of visiting the Haematologist which is vital with MPN disease.  The wait should be easier having had the tests done.  The main reason for the tests you underwent is that being a blood related disorder and your symptoms, the heart and lungs etc,  there can always be a correlation between these body organs so it is best it they can be eliminated and so concentrate on the diagnosis.  Your prognosis seems good.  Best of luck.

Peter.

 

Hi Peter and All,

Just popping in to see what is happening with everyone.

I am still going through the 'procedure', blood tests, chest x-ray and ultrasound.  

The good news is that my spleen isn't enlarged but I have gallstones.  Who knew?  I don't think these are a symptom of PV.

It take forever doesn't it but my fingers are crossed for good news.

Best wishes to everyone going through the mill with this and I wish you all more patience than I possess.

Tilly

Hello Tilly,

No, gallstones are not a known symptom of PV but of course you cannot ignore them if they prove troublesome.  That your spleen seems normal must be considered good news as this is something that often needs supervision as it is basically a blood cleansing organ.  This is usually encountered if the PV progresses to ET, MF etc.  It is not something that has affected me personally in all the time I have received treatment.  A regular spleen check can confirm or refute any problem here.   Very simple test.  These PV tests do take time as it is important that you receive a firm diagnosis of what you have so the treatment you receive is correct for your situation.   Other complaints can promote similar symptoms as PV.  Time now to relax and enjoy the sunshine.  Good wishes.

Peter.

Hi Peter,

I had thought that the fact I did not have an enlarged spleen meant that it was unlikely that I had PV but it seems that is not definite.  Hmm.

The long investigative process is so frustrating and I know I am not the only one who wishes there was an instant diagnosis.  

All the best,

Tilly

 

Hi Tills,

The absence of an enlarged spleen does not indicate that you do not have PV, just that it has been unaffected by the red blood cell cleansing it is required to perform.  PV is indicated by the blood tests initially taken by the Haematologist.  The more PV progresses the more red cell residues will affect the spleen as these residues will need to be filtered out.  Drugs can effectively control an enlarged spleen.

The less PV progresses the less the spleen residue will need filtering.   PV is caused by the bone marrow over-producing red blood cells.  Don't be too concerned about test delays, we all have been through this.  The essential object is to obtain an accurate result.

Peter.

Thanks Peter,

I know that I have to be patient - just not my best attribute!

Your information about the spleen is very interesting - if disappointing.  I believed that no spleen enlargement = no PV but this clearly isn't so.

The more information I glean about PV, the more I realise what a complicated and fascinating disease it is which seems to tailor itself to each person as you all seem to have different symptoms and experiences.

I will calm down and wait!  

Tilly

 

Hi Tilly,

For sure, PV and other related disorders can make you scratch your head at times.  It is not a one size fits all disease as each person is different and the reason why each one needs to be a separate object of investigation.    As you say, a lot depends on your blood tests now under way and these need to be accurate where PV is concerned.    The treatments involved must be geared to your results.  Anyway, it is sadly, a wait and see  time.  The results could be beneficial in some ways.  Keep happy.

Peter.

Dear Peter and All,

It has taken forever but I now have a result!  Negative for JAK and my Haematocrit is down to 47.

The Haematologist has signed me off unless my Haematocrit  level rises again.

I can't tell you all how much this site - especially you, Peter - helped me through a worrying time and answered so many of my burning questions.

It also taught me patience!

My thanks and very best wishes to you all.

Tilly