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I'm confused

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julia15874
julia15874

Hi my name is Julia, I'm not sure if I'm part of your group but just asking if anyone has any advice, I've been under a Heamotologist for high red blood count heamoglobin red blood cells and heamotocrit, basically for Polcythemia, my levels are continually rising and getting no where, my question is how does your blood result represent if you have hemochromatosis? Does it show high heamoglobin, heamocrit and red blood cells? I've never had any investigations for it? But thought who better to ask than those who have it? Thank you jxx

1 like, 7 replies

7 Replies

  • sheryl37154
    sheryl37154 julia15874

    Posted

    For classic haemochromatosis, we have a high ferritin level (>300), high transferrin saturation % (>45%), high serum iron (>30).  While my Hb and HCT is higher than the norm, they do not have to be.  Our Hb recovers quickly after venesection.

    An Iron Studies blood test will reveal.

     

    • julia15874
      julia15874 sheryl37154

      Posted

      Hi sheryl thank you what would your symptoms be? I'm dizzy and I've painful hands and joints x

    • sheryl37154
      sheryl37154 julia15874

      Posted

      Untreated, unrelieved fatigue is usually the first sign, waking up feeling like run over by a truck, joint pain, in my case, full body pain (bone and muscles), in my case my hips broke up and had to be replaced, chest pain for a year until I was diagnosed and venesections eventually dissipated the pain.  I was undiagnosed for 9 years, so things got bad.

      Some mention pain in abdomen, some say upper RH side, I eventually realised I could not digest sugars and starches which caused stomach pain, and had 6 duodenal ulcers because I also had Helicobacter Pylori which thrives on iron.

      Some end up with liver problems, some major (cirrhosis and worse), some end up with diabetes, heart problems, thyroid problems, etc.

      Early menopause, loss of libido and impotence - there are many symptoms and a lot of us are different.

      If your dr has diagnosed polythycemia, he/she no doubt has checked out your Iron Studies.  The results of both are usually distinctive.  If your dr has not tested your IS, ask them to do so, just to be certain.

  • mike80628
    mike80628 julia15874

    Posted

    Hi Julia. Welcome to the group. To keep it very basic, the key thing to look for with Haemochromatosis is a high ferritin level, this is the iron storage level. For a female it should be roughly between 50-200, and a male, 50-300. My level was 2000 when I was tested!! I then had the gene test to confirm I had Haemochromatosis.

    So, that's the basics...have you had your ferritin level checked.....

    Keep us posted...

    Mike.

    • julia15874
      julia15874 mike80628

      Posted

      No I've not, I've Polycythemia as my heamocrit heamoglobin and red blood cells are high, but I've a low RDW??? I'm not sure what that is?

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