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Could I have PV?

Posted , 5 users are following.

Tills
Tills

My GP is concentrating on my very low Thyroid level and thinks this is responsible for my total exhaustion. 

However, my Haematocrit is 53, Haemoglobin 168 and I have many of the symptoms of PV - some of which could also be symptoms of Hypothroidism which I have had for 30 years.

My concern is that PV symptoms are being dismissed and so would like some advice as to whether I should try to pursue this or accept that these will disappear once my thyroid levels are raised with the increased medication.

Tilly

0 likes, 52 replies

52 Replies

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  • peter98873
    peter98873 Tills

    Posted

    Hello Tills,

    Really, this is a question best decided by your medical advisers.   I know from the experiences of a close family member that Thyroid problems can be very troublesome and varied, as is Polycythemia (PV).  It is very possible that your thyroid complaint could cause effects associated with PV for this is not an unknown feature as other illnesses are known to have the same effect.  Usually these prove to be of an effect similar to those found in Primary PV.   Effective treatment for the original complaint leads to a removal of the symptoms found with the PV.   To confirm PV you would need to be investigated by a Haematologist to make the diagnosis which can arise in several guises, each requiring individual treatments.   Have you considered seeking an appointment with a thyroid consultant for a specialist viewpoint.   I am aware that a thyroid complaint can affect quite different parts of the body and be very difficult to treat as each person provides their own unique symptoms.  This is very much as one finds with PV, which is a very rare and serious illness.   I wish you well in your endeavours.

     Peter.

  • margo82957
    margo82957 Tills

    Posted

    You do not have PV. My hemoglobin is 8. I have PV.

    Have your DR check your leukocites mine are super high 19000

  • Tills
    Tills

    Posted

    Thank you Peter and Margo for your replies.

    Margo, my leukocytes are normal.  I don't know much (if anything!) about PV but I was unaware that it was defined by high levels of  white blood cells. I am comforted that I do not have PV.  Thank you.

    Peter, your advice is helpful and I will just concentrate on my thyroid issues.  Seeing an endocrinologist in my neck-of-the-woods takes months as he and his team are understaffed and overwhelmed.  My Doc has written to him for advice so I will wait for that - although it is taking ages and I am not known for my patience!

    Hugely relieved that I don't have PV.

    Goodbye and good luck to everyone.

    Tilly

  • harrishill1
    harrishill1 Tills

    Posted

    Hi tilly. If you have an extremely high red blood count, you shd be sent to a hematologist so you can be diagnosed properly. PV is a serious rare disease and regular doctors do not know enough about it to properly treat us for it. The hematologist is the one who prescribed treatment and meds to treat my PV.   

    ​Maybe you shd ask to be referred to a hematologist. Best wishes, and hope to hear from you when you have been diagnosed. harrishill

  • Tills
    Tills

    Posted

    Hi Harrishill,

    Thank you for your message and advice.

    I am concerned about my high Haematocrit which I have just discovered has been rising (now up to 54) and has never been lower than 48 since 2015.

    I suspect I will have to have yet more blood tests before anything happens.  I might try to persuade BUPA to pay for a haematologist or decide to pay myself for peace of mind.

    I do appreciate that it is much more complicated than simply high Haematocrit, Haemoglobin and Urate levels but I would like to know why they are so high and what I can do about it.

    Thanks again,

    Tilly

    • peter98873
      peter98873 Tills

      Posted

      Hello Tills,

      Haematocrit can vary with age differences.  A male level is normally between 42-54%.  For a female it is 38 - 46%.  Low level can indicate anaemia.  A high level can be due to dehydration, lack of oxygen (maybe COPD) a cardiac problem and also Polycythemia by the over production of red blood cells by the bone marrow.  Lack of oxygen can be by any cause e.g. smoking or environmental issues etc.  With Polycythemia a suitable treatment can stabilise the Haematocrit level, as well as dealing with other readings used.  An important reading is that of the platelets in the blood.  If you have not visited a Haematologist it might be worth your while to do so for a precise test and advice.  If you are in UK see your GP.  If elsewhere it may be a different system applies.    Good luck.

      Peter.  

  • Tills
    Tills

    Posted

    Dear Peter,

    Thank you for your reply and advice.

    My apologies for the delay in acknowledging this.  I have had eye trouble and could hardly see the screen to write - still having difficultly.  I don't usually have eye problems but, at least, I can't put this down to PV!

    I have never smoked and don't think I could have been dehydrated  for both blood tests.

    I have a GP appointment next week and will ask if I can be referred to a Haematologist - I will pay, if necessary for peace of mind.  

    What I would like to know is what other explanation is there for high haematocrit, haemoglobin and urate level.  If is is unconnected with PV, then what is it?

    Tilly

    • peter98873
      peter98873 Tills

      Posted

      Hi Tills, high haematocrit can be caused by heat exhaustion (dehydration), a low oxygen supply to the lungs etc., living at or frequenting high altitudes (flying etc), some medical conditions, over production of red blood cells by the bone marrow (PV), COPD and sleep apnoea, embolisms.  There are others but these are most commonplace.  Venesection is a possible treatment.  I concur that you would benefit by more professional medical advice by a haematologist and would suggest a referral by your GP who may also learn from the experience.  You could always suggest another hospital might be used where there is a prime haematology unit available.

       Let us know how you fare.

      Peter.

    • Tills
      Tills peter98873

      Posted

      Hello Peter,

      You are certainly the guru on this forum and I am grateful for your input.

      I can't relate to most of the possible causes for high Haematocrit and Heamaglobin but have no idea about  overproduction of red blood cells.

      The more I read about PV, the more I hope that I am worrying unnecessarily but I need to know one way or the other.  

      I have a GP appointment next week and will let you know how I get on.

      Tilly

    • peter98873
      peter98873 Tills

      Posted

      Hi Tills, 

      Thanks for your response.  The best thing to do is to take things easily and to take things as they come.  It can be a very complicated disorder to understand particularly as most people will have different experiences with their effects and treatments..  Do not jump too far ahead of your situation and learn as you go along.  You will soon get the hang of things so a little at time is recommended.  Don't forget, your Haematologist is the professional here and able to answer any real difficulties you encounter.  It is unlikely your GP will know too much of Polycythemia as they rarely have to deal with the disease,

       and always refer their patient to the Haematology Dept. for further appraisal.  With proper treatment you can survive for many years with a degree of comfort.  The over production of red blood cells by the bone marrow is the cause of PV and can be put at a fault of the JAK gene usually from birth.  It is not considered hereditary or transferrable.

      Best of luck.

      Peter.

      Peter.

  • Tills
    Tills

    Posted

    I have just returned from a GP appointment to discuss my blood test results.  I expressed my concern that I had many of  the symptoms of PV.

    He assured me that I did not have PV which, of course is wonderful news.

    I asked him to explain some of my 'high-off-the-scale' blood test results and we went through them one by one.  He was fairly dismissive of all readings, citing them normal and suggested that the Haematocrit could be a one-off.  I pointed out that the five blood tests that I have had in the last thirteen years never showed a Haematocrit level below 48 and the last two this year were 53 and now 54.  He said that my current level of 54 is 'on the cusp' and nothing to be concerned about. I said, politely,  that I was concerned.

    I am certainly not trying to talk myself - or him - into a PV diagnosis but I wasn't happy to leave it like that.

    I asked if individual test results should be viewed, as he did,  in isolation or taken together to form a picture and also if 'how the patient felt' was taken into account.

    He agreed, consulted an app on his phone and then typed a letter to the local Haematology department to ask for advice.

    Perhaps a Haematocrit level of 54 is now considered normal and I am making a fuss?  I shall know soon!

    Tilly

    I sincerely hope that his instant diagnosis is correct but will feel happier when I hear that from  Haematologist.  

    • peter98873
      peter98873 Tills

      Posted

      Hi Tills,

      Your diagnosis of not having PV must be very good news.  Do remember though that each person has a different biological make up (DNA etc) and may produce quite different blood readings.  These can vary as can any other aspect off your system.  It should not alarm you.  If your results are fairly static it should not pose any difficulties.   Your GP seems to have your interest in mind by checking up for you.  Certainly the Haematology test is the real check-point but as your PV is not diagnosed unless the haematologist does not have other cause for concern that should be the conclusion of the PV worry.  Let's hope it all works out.

      Best of luck.   Peter.

  • Tills
    Tills

    Posted

    Thanks Peter,

    I am feeling a lot more sanguine (hope you like the choice of word!) about things and have hope that I will get further good news from the Haematologist in the next few days.

    I will post the decision.  

    Tilly

  • josh618
    josh618 Tills

    Posted

    Hi tills,

    It could be do to  dehydration I’ve just want through a bunch of testings for pv my hc was at 56 and hg was at 19 everything came back negative. I was just  recently was in the  hospital for a  kidney stone they did blood work and my number where still high they said I was  pretty dehydrated  So they  hooked me up to fluids and redid the bloodwork and all my number came back to  normal  so I’m convinced it was just from being dehydrated all the time 

  • Tills
    Tills

    Posted

    Hi Josh,

    Thank you for your input.

    I agree with you that a high Haematocrit could be due to dehydration but that would mean that I was dehydrated for all five blood tests over a number of years.

    I just hope that another benign  cause will be found for the various high levels in my blood as I really don't want a PV diagnosis.

    Having said that, it doesn't seem quite so scary reading the comments on this forum and advice from everyone living life with PV.

    Tilly

    • josh618
      josh618 Tills

      Posted

      Tills I’m in the same boat as you my hg and hc have always been on the higher side   Usually around  17 for the hg and 48 for the hc Ive looked all the back to 2012. I seen a  hematologist last month all my other blood work cameback normal no jak2 mutation he said some ppl just tend to be on the higher side and released me with a clean bill of health Since I’ve been Drinking more water the numbers have been coming down. Hopefully you’ll have answers soon
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