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reply from the Harmochromatosis Society

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chorleyboy
chorleyboy

Hi, I just got a reply from the Haemochromatosis Society about high ferritin and transferrin saturdation percentage levels.      The jist of the email says that infection and inflammation can cause the ferritin to climb, as can conditions such as arthritis and liver problems.and basically I need to stay on weekly venesections until such time as they begin to reduce the ferritin level, which apparently could take some time.    I have been giving blood now for sixteen months, initially fortnightly but for the past couple of months, weekly and at last I have an appointment of sorts with the Docotor at the Hospital, if, my ferritin level down not go down in two weeks time.    If it doesn't go down, I dont know what he will suggest.    Keep giving blood I imagine but it is disheartening not to see a result after all this time.    Glyn   

1 like, 5 replies

5 Replies

  • GillianA
    GillianA chorleyboy

    Posted

    The Society is right in saying that inflammation, including that caused by infection, can put ferritin up.  Have you been tested for inflammation?  If your white count, c-reactive protein (CRP), and liver tests are normal, inflammation is not likely a reason for ferritin being up. 

    Of course there is nothing that stops us from having just too much iron or just inflammation - it is quite possible to have both.  If you have both iron overload and inflammation, you need to get rid of the excess iron plus figure out what's causing the inflammation and if possible fix that too.

    • chorleyboy
      chorleyboy GillianA

      Posted

      Hi, thank you for your comments.     I did ask about a CRP TEST but the nurse didn't know what that was so that was that really.    However, if my ferritin level does not start to reduce in the next two weeks, I will be seeing the Consultant and I shall ask him about a CRP TEST.   Hopefully, after quite a few weekly blood lets, it will start to reduce and make a difference.  I also have severe arthritis, causing problems in my ankle, apparently my ankel has no movement, dead basically, and no operation offered as it is unlikely it would  be successful.   Pain injections starting soon.   But, the arthritis and the fact that I had a tumour on my liver ablated last year, doesn't help either, regards Glyn

    • GillianA
      GillianA chorleyboy

      Posted

      If it helps, here's a definition of the c-reactive protein (CRP) test from labtestsonline.org - "The C-reactive protein (CRP) test is used by a health practitioner to detect inflammation. CRP is an acute phase reactant, a protein made by the liver and released into the blood within a few hours after tissue injury, the start of an infection, or other cause of inflammation. The CRP test is not diagnostic of any condition, but it can be used together with signs and symptoms and other tests to evaluate an individual for an acute or chronic inflammatory condition."

      Do you think your ankle might be the culprit?  If it's red and/or warm, redness and warmth are signs of inflammation . . . .

    • chorleyboy
      chorleyboy GillianA

      Posted

      Hi Gillian, thank you for the info.   I do think the ankle has a lot to do with the problem of inflammation and keeping the levels high.   There is discolouration around the anklle, in particular around the knuckle as I call it, and it is quite warm too.    It is swollen.     I am supposed to be getting injections in the ankle to relieve the pain but the Doctor is not overconfident that this will be a help as he said the ankle is beyond repair. with no movement as such and basically dead.  I am giving blood again on wednesday but no test will be done that day, not until the next wednesday, and then I will know if there is a reduction in the ferritin and ts levels.    Apart from that, carpal tunnel is driving me bonkers and I am not sure if that too is linked to haemochromatosis.  regards Glyn
  • Charlieangel
    Charlieangel chorleyboy

    Posted

    It strange you say this as my son is only a carrier but also has high ferritn levels my sons doctor has had to ask for advice from a specialist and the specialist asked was my son taking any supplements or high energy drinks because its unusal for a carrier to have high levels .my son has now been refered for an mri scan of the liver also a 24 hr bp monitor and a heart scan due to high bp and fast heart rate he has joint pain and is always tired his skin is dark . He is only 28 im also a carrier but levels normal . Its all a guessing game .
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