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Polycythemia ?

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rex2001
rex2001

I am 16 years old male and I dont smoke or drink.When I got checked up after having stomachache and vomiting, my Hb was high, 18.6 g/dL to be exact,and hematocrit was 53.4 then doctor told me it could be dehydration.In August,I started to feel slight headache like small pounding that doesnt hurt much but very annoying,I checked my Blood then Hemoglobin was 17.3 g/dL and RBC is 5.89*10^12 Hematocrit is 51 %,ESR at 2 mm/hr.My uric acid was high at 9.7 .Could I be having polycythemia ? My doctor says hemoglobin is ok and I am fine,but because I am still feeling the headache ,i went to a second doctor and this second doctor told me it might be hyperviscosity symptoms.What levels of blood are considered polycythemia ?Am I considered having high RBC or Hb ? Thanks in advance

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  • PO32_6AP
    PO32_6AP rex2001

    Posted

    HEllo there well what can I say you can be born with this so not unusual to have it. If u have plenty of excercise keep

    Of the cigarettes and just the odd glass of wine a week you can live a happy full long life they don’t usually give hydroicarbinade tablets till u are in your ssixtys as long as vienession s help and diet can control your symptoms best of luck Bx

    • rex2001
      rex2001 PO32_6AP

      Posted

      Thanks,I am starting to do more exercises to manage the excessive fatigue and it turned quite fine However the slight headache is still there and It bothers me a lot. I havent been diagnosed yet,hope it is just normal and go away on its own ...
  • peter98873
    peter98873 rex2001

    Posted

    Hi Rex,

    Well, I would say that you may be jumping the gun a bit with respect to your query about Polycythaemia.   For you to be confirmed with this illness you would need your doctor to refer you to a Haematologist for specific tests to be conducted.  The likelihood of you having PV seems fairly remote with the comments and figures you have quoted.

    PV is known to be a genetic illness and usually is with a person from birth.  It is not transferrable or inherited in normal circumstances.  Sure, you could be holding this disorder from birth but it is very unusual to reveal itself so early in ones life, but not unknown.  PV is a very rare disorder affecting 2 people in 100,000 at the last known count,

    but in most cases it does not reveal itself until much later in life.  The cause of PV is by virtue of the bone marrow over-producing red blood cells to compensate for a lack of oxygen in some organs of the body.  This disorder is currently incurable but treatable.    It is for the long term and a very variable and serious illness.  Headaches can be caused by many different causes but with PV is not generally considered a symptom.  Perhaps you need to further check your blood pressure for this causes some of the symptoms you reveal.   High uric acid is associated with gout but this is not alone.  Don't wish this disorder upon yourself for it's something you can do without.  I would suggest that you discuss this matter fully with your doctor in order to determine just what is affecting you.   If he feels you suffer from PV he has the option to refer you to a Haematologist.   Best of luck.

    • rex2001
      rex2001 peter98873

      Posted

      I hope that I am fine.I am sad of my future though, as wikipedia says the condition may transform into leukemia and untreated polycythemia may cause death.The two doctors' opinion are contrasted.The first one said the Hb is still within normal range and the dizziness is not from the Hb levels,while the second one thinks it is high and could be the cause of slight headache.I looked up and seem to find the normal values of Hb to be up to 18,though some list 16 as high.How much Hb and RBC is usually needed to consider polycythemia ?

    • peter98873
      peter98873 rex2001

      Posted

      Hello Rex,

      You must accept the point that until you receive a professional diagnosis of Polycythaemia you will not receive any treatment for this disorder and it is most certainly not good practice to speculate on your condition until something specific is made known.   If you were already a confirmed PV sufferer then perhaps this forum could properly advise you.  It is only too easy to misdiagnose yourself on the internet offerings, even if you visit an established medical site.  PV and other MPN disorders are very variable and serious to deal with even for the medics themselves.   You need a proper diagnosis and professional consideration of all your symptoms etc. in order to receive correct treatments.  There is no reason why you could not seek a separate Haematologist who is a specialist in blood diseases.  From time to time this forum receives  individuals seeking advice, such as yourself who cannot come to terms with medical problems and an all cases invariably need medical advice.  Think on it.

    • rex2001
      rex2001 peter98873

      Posted

      Do you think I should go to a hematologist ?.The annoying headache keeps on coming back preventing me to study well
    • peter98873
      peter98873 rex2001

      Posted

      Hello Rex,

      If you suffer continuous headaches you should visit your doctors for the causes are many.  You may need extra examinations and checks to find what is causing them.  You will not normally see a qualified haematologist unless referred by a qualified doctor.   It is the same with any other specialist, unless you are prepared to pay heavily for their private services.  It is unusual to find a qualified doctor on a forum such as this and I must admit I do not know of any here.  Most advice is given by patients who are diagnosed with the PV disorder and are able rely on their experience in combating the disease.  It can be a very long journey.  It is the same with most other forums.

  • PO32_6AP
    PO32_6AP rex2001

    Posted

    Headaches can be caused by stress about exams worrying about what could happen get checked out high blood pressure all sorts but as u are so young get the headaches sorted go on holiday enjoy yourself xxxx
  • bill71415
    bill71415 rex2001

    Posted

    Your hemoglobin is on the high side but within the normal range for males (The normal Hb level for males is 14 to 18 g/dl) withouth Polycythemia Vera (PV, where its recommended to be 16 or under due to the overproliferation of red cells). So I would not jump to the conclusion that you have either polycythemia OR PV. Even if you are diagnosed with Polycythemia (which is just determined by your red blood counts being/staying high) you should not assume Polycythemia Vera which is a chronic bone marrow condition. If its not PV then the doctor(s) will work to determine what in your body is causing the elevated blood counts. In either case, a good hemotologist is probably recommended to help figure out whether polycythemia or PV are causing your headaches.
    • rex2001
      rex2001 bill71415

      Posted

      Thanks @bill71415 I tried drinking zantac and paracetamol to relieve my acid reflux and headaches.The headaches seem to increase when I am tired but after drinking the meds it has subsided.I hope this is not PV.Unfortunately ,I dont have time to look for hematologist especially due to schoolwork that is piling up.My parents think its better if I try to exercise and drink water and see if I still have the headaches.I suppose If i have PV this condition isn't capable of killing me suddenly right ?

    • bill71415
      bill71415 rex2001

      Posted

      Yes, try not to over-worry (easier said than done)!

      There are many conditions that can cause polycythemia that are NOT vera so my guess is that's what you have (not a medical opinion as I'm not a doctor). Do you snore and/or possibly have sleep apnea? Do you live in a higher elevations? Either of those can also cause higher red blood counts. The main danger of higher red blood counts is clotting problems where a clot is caused and then gets loose and travels to critical organs (heart, lungs, brain). Again, if you are an otherwise healthy 16 year old this is not likely, but you should work with your doctors to find out what is the underlying problem. Exercise and drinking lots of water are both good, at any rate. Good luck to you, keep a positive attitude!

      Best regards,

      Bill

  • rex2001
    rex2001

    Posted

    Update : I went to a haematologist today and he said that the headaches are caused by viscous blood,and uric acid was due to the thick blood.He sent me to get Jak2 test and BCR-ABL test.What does these test tell ? Jak 2 is supposed to detect polycythemia right ? But isn't BCL -ABL test for leukemia? My leukocytes were completely normal though .

    • peter98873
      peter98873 rex2001

      Posted

      If you have the haematologist diagnosis it should be something you can rely on.  Certainly JAK2 indicates Polycythaemia or if affected by the gene mutation can indicate Polycythaemia Rubra Vera.   It is not customary to be tested so soon for leukaemia as this is generally the end product after long treatment for PV.  Unless your Haematologist advises you that you have this disease then that must be considered but as your  Leukaemia test did not seem to confirm this then you should think more along the PV avenue.  Leukaemia if diagnosed should receive immediate attention.  Uric acid (gout) has been associated with PV but it is not particularly commonplace.  Thick blood is a product of PV etc by virtue of the bone marrow overproducing red blood cells, to compensate for the lack of oxygen supply in parts of the body.  PV and thick blood are treatable with PV treatments which are provided by your haematologist.  Uric acid is well treated by available medicines (on prescription).  If you are advised that you have tested positive for the JAK2 gene mutation that will require a somewhat different approach to the treatments for PV.  It can be a complex situation.  With the right treatments your problems can be effectively treated.
    • rex2001
      rex2001 peter98873

      Posted

      My doctor asked for a viscosity test as well.I am hoping it comes back normal ,the Jak2 test as well.If Jak2 has mutations ,does it only mean PV or something else ?
    • peter98873
      peter98873 rex2001

      Posted

      If your test is positive for JAK2 with the gene mutation then you have Polycythaemia Rubra Vera. A viscosity test will reveal the thickness of your blood, and this will normally be controlled with aspirin if needed.  The treatment depends upon your test results.
    • PO32_6AP
      PO32_6AP peter98873

      Posted

      Haven’t heard from you fir ages on the Paients forum. What happened how did it all work out. I’m on 16 hydroxide a week it is controlling it but I do get ulcers now and again . Apart from that I have a normal

      Life . Busy Bee

    • rex2001
      rex2001 PO32_6AP

      Posted

      Hi,School life has been very hectic right now,hence my disappearance.I have got the JAK2 test result.It sa

      ys that I have JAK2 V617F mutation,but the doctor has suspected the result to be false as no line can be clearly seen in the 203 bp. Where I live is still a developing country,which might explain the inconclusive result.I had a recent blood test and it showed decrease in Hb it is 16.8 now and hematocrit is 50.8 ,and Uric acid is now 6.7,and RBC is 5.6*10^9.I still have chronic headaches though.I suspect that it is probably neck tension as I use the phone a whole lot.Is 16.8 Hb supposed to make you headache ? People reports having 20 upwards Hb and no remarkable symptoms.So I am not sure if it is caused by the Hb levels.I hope I am fine.Thanks! Hope you are fine as well!

    • peter98873
      peter98873 PO32_6AP

      Posted

      Hi PO32 6AP,

      Sorry but I have been out of touch for various reasons but now things have settled down again I shall keep an eye on things once more.   Ulcers in the mouth and on the feet can be caused by Hydroxycarbamide when taken over long periods, especially if the dosage increases too.  Do keep an eye on things.  16 x 500mg caplets is getting on a bit in usage terms.  Suggest you see a Podiatrist about the foot ulcers  (see your GP for referral) - I have been through all of this.  Difflam Oral Rinse (on   prescription) will treat the mouth ulcers.  Take care.

      Peter.

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