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Polycythaemia

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mitchell90850
mitchell90850

Hi, 

I am hoping to find out more about my recent experience with polycythaemia and my blood readings from people here. 

I’m 35, and have felt unwell for about a year. I suffer from quite bad anxiety and many of my symptoms were put down to that until recently. 

I went for an appointment at the doctors on the 5th Jan due to tiredness, weakness and chest pains and upper back pains. I also noticed I was getting pins and needles easily. The doctors gave me a full blood test.  When the results were back my HCT level was 0.577.  The doctor mentioned polycythaemia, sticky blood and referred me to a blood specialist at the hospital. 

In the meantime I read up on primary vs secondary polycythaemia.  I also immediately started taking daily aspirin 75mg, cut back on drinking and drank more water. 

I attended the haemotologist appointment on 12th Feb and he asked me whether I smoke (I do not) and whether I drink (I had been drinking 2-3 pints per day).  He said he thought it was likely alcohol related and to stop drinking (which I already had cut down) and to start low dose aspirin (already had).  Whilst I was there I had another blood test and was booked in for a venesection on the 15h feb. 

By the time I went for the venesection, my second blood test results were back.  The level had dropped to 0.497.  So now within range, but still high.  I had the venesection as planned. 

I have a second venesection booked in on 22nd feb.  My brother is also borderline polycythaemia I now know. But no action is needed for him just yet, according to his doctor apart from seeing a blood specialist soon. 

I should have asked the specialist more questions, but didn’t. Hence hoping for some answers here. 

1. What could have caused my HCT level to drop from .577 to .497 between 5th Jan and 12th Feb?  Does this usually happen with PV? Is that a big drop?  Is it more indicative of primary or secondary? 

2. Does 3 pints a day sound enough to cause secondary polycythaemia? I can’t see how.  I’m not an alcoholic. 

3.  I have lots of aches, pains, fatigue, pins and needles, chest stabbing pains.  Are these symptoms caused by the high HCT or the underlying ilness itself? Will they go away once my hct is lower?  Are the symptoms generally the same with primary and secondary?

I personally think I have polycythaemia Vera because I seem to have not secondary causes (don’t buy the alcohol reason).  Also my brother has high HCT too suggesting same defective gene? 

I also noticed on my blood test that platelets and WBC have increased between the two blood tests (although still well within normal range).  Is this a sign of primary or can they fluctuate normally?

Any advice is really appreciated. 

Thank you 

0 likes, 22 replies

22 Replies

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  • Zapamania
    Zapamania mitchell90850

    Posted

    Hi Mitchell a hematocrit of 57 is very high. If you have Pv they want a mans hematocrit to be 45 or under, women 42. Alcohol could be a cause of secondary Pv. And if you take away the culprit, in your case alcohol, it could subside. That being said, you need to get a blood test to see if you have the Jak2 mutation. If you do, its primary, if not it could be secondary. Platelets can fluctuate a lot. Your symptoms aren't classic Pv. The fatigue is. So are the aches. When you say pins & needles, do you mean tchy or like the feeling of bug bites? It's a very complicated and rare disease. Stay on the aspirin, drink  as much water as you can and stop all alcohol. Get the Jak 2 mutation blood test to settle the unknown. Good luck

    • leigh49454
      leigh49454 Zapamania

      Posted

      I got polycythaemia very with Jake 2 motion. I was 36 years of age my hematocrit was 78 . I was very lucky to be alive I was allways like a tomato out of breath and passing out . in the last to years I really don't think the doctor's understand it tidy becouse they haven't really explained anything to me . some told me to have a chat with MacMillan people . don't know if there right or not many thanks leigh

    • peter98873
      peter98873 leigh49454

      Posted

      Well Leigh, I would ask if you have been referred to a Haematologist who is the blood specialist that deals with the investigation and treatment of Polycythemia, and other blood diseases.  It does seem you might need some personal consideration as to your plight.  As you have been referred to the MacMillan Nurses it makes me wonder just what illness you do have.  PV is not of itself generally thought of as being of a short term nature and its treatment is usually dealt with by Haematologists.  I think you should either have a word with your own doctor for more medical advice on your complaint or contact the doctors you may already have dealt with for extra information that they may be able to offer.
    • leigh49454
      leigh49454 peter98873

      Posted

      Iv had PV with Jake 2 positive for two years Iv with haematology since day one I'm on hydro amide everyday along with other tablets .as of what I could claim because I'm to tied to work at this time in my life. I know that PV is a life long illness iv been told to try for pip benefit

    • peter98873
      peter98873 leigh49454

      Posted

      Hi Leigh,

      Thanks for your reply.   Well it appears you are on the right road with your treatment.  PV can prove to be a very variable illness and each patient is considered on their personal assessment.  Surprising how different the treatments can be from one to another.  If you are prescribed Hydroxycarbamide it can be a good boost but do ensure you are regularly tested by your doctors as it is a very powerful drug.  I can't offer any advice on PIP as it has never applied to me but knowing how these things operate try to get someone who knows the ropes when it comes to applying for this can be a stumbling block if the information supplied is incomplete.  

    • ML14185906
      ML14185906 Zapamania

      Posted

      You all seem quite intelligent on the matter of PV. I was wondering if you could help me ease my concerns, because I've recently been diagnosed with antiphospholipid syndrome but I have a history of migraine attacks, blood clots, neutropenia and Anemia. I've been looking at this PV for a while now and was wondering whether you thought that their could be any relation. Any advice would be great, thank you.

    • angela_o..o
      angela_o..o ML14185906

      Posted

      Hello ML, hope you don’t mind me butting in here but from what I can see antiphospholipd syndrome is an autoimmune thing whereas polycythaemia isn’t.

      Also, polycythaemia is the opposite of anaemia. We make far too many red blood cells (and sometimes white blood cells and platelets too).

      I think the fact that both we and you run the risk of developing clots is just a coincidence.

    • ML14185906
      ML14185906 angela_o..o

      Posted

      Thank you very much. Was going to ask this question in another group but if it could be answered here, it would completely clear me of all worry. Is there any possible connections between rhesus disease and PV, just wondering?
    • angela_o..o
      angela_o..o ML14185906

      Posted

      Rhesus disease is where a mother’s antibodies destroy the blood cells in her foetus?

      Polycythaemia affects adults, mostly quite elderly adults, and mostly men (I just happen to be one of the lucky women) so no, I don’t think that there is a link between polycythaemia and rhesus disease.confused

    • ML14185906
      ML14185906 angela_o..o

      Posted

      My mum is  A-, I'm O+. I'm pretty young nearly 21 and I'm a guy. Is it possible for the first child to be affected? I was hoping for some connection because I've been to many doctors over the years and I haven't been able to cure my pain. My symptoms are practically the same to PV. Are there many forms of PV or just the one?

    • angela_o..o
      angela_o..o ML14185906

      Posted

      I’m afraid I’m not a doctor and this is way beyond me. I suggest you ask your haematologist during your next visit. Sorry.
    • peter98873
      peter98873 ML14185906

      Posted

      As I understand it, your illness is really associated with females.  This is an immediate difference between your illness and Polycythemia which is the result of a genetic defect at birth that affects both male and female.  Polycythemia (PV) can mutate to other other forms of the disease and and is one of the disorders in an associated group called Myelo Proliferative Disorders (MPV's).  Symptoms of these diseases often seem similar to those of other unrelated illnesses as you have already discovered but cannot in any way be medically connected.  Strokes, heart attacks, problems with other organs etc are

      related to the circulation of blood which in itself can be affected by damage within the blood system.  The only way to find out for sure, is to seek the advice of the professional medics you visit and obtain their opinion.  There is no doubt that when one suffers from an illness such as PV and takes an interest in its

      causes, effects and treatments it is possible to gain a huge knowledge on these points and be in a position to help others with good advice for those that require it.  But despite this, we in most cases, cannot offer the extensive advice available from the professionals and this we always leave to them.

      PV and your illness are both of a very serious nature with long-term effects but should be treated entirely differently, despite the apparent similarities.  The good aspect of a forum such as this is that you can speak to others who are like afflicted and can offer a very practical knowledge of their illness and the way it has affected them personally.  I hope this is of value.

    • ML14185906
      ML14185906 peter98873

      Posted

      Thank you, most of my concerns with regards to similarities seem to be purely coincidence. But I will seek professional knowledge as you suggest. I'm am grateful for everyones time, thanks again 

  • mitchell90850
    mitchell90850

    Posted

    Thanks, I have completely stopped drinking alcohol and drinking loads of water.  I was getting pins and needles like when you sleep on an arm or cross your legs.  It’s has subsided now though. 

    I’m not itchy, don’t get headaches, but do get dizzy and spaced out.  I saw on the blood test that the JAK2 gene was being investigated, so I’ll just have to wait. 

    I was wondering if anyone has heard of HCT dropping by 8% in a few weeks?  From 57% to 49%.   I haven’t read anything like this.... 

  • Zapamania
    Zapamania mitchell90850

    Posted

    Hi Mitchell I've heard of platelets dropping as much as 100 pts without any meds, just aspirin. I can't recall. If I've ever heard of the hematocrit drop but I'm not positive. I guess you have to wait for the Jak2 results. Until then, keep up the good work you're doing and hope for the best. Hoping for secondary. 

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