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Negative for HH but iron levels at 451 ug/l

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Guest
Guest

Have found the forum most useful.

Second blood test shows my Iron levels at 451 ug/l and some of my bloods (Haemaglobin, WB, RB, Haematocrit, Neutrophil) have come back as above range. 

I've had high (ish) iron levels since 2012 although back then, these were within range

Gene tests for HH are negative. My GP has suggested I go off and give blood and to have blood tests again in a couple of months. Hmmm

I'm a bit lost as what to make of this - I'm inclined to get a second option first up, can I check if others found this approach pretty much standard?

any wisdom appreciated, thanks in advance 

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  • Guest
    Guest Guest

    Posted

    It is not because you are negative for HH that you do not have haemochromatosis. You are just negative for the ( known ) hereditary version(s). I also have high ferritine levels and saturation and I also tested negative on HH. It also not diet related. My specialist told me that I could still have a genetic form of haemochromatosis. Keep in mind that you can also have elevated levels of ferritine because of infections or some auto-immune diseases. If your doctor ruled out these external causes, the treatment is just the same. Venesections until you are within range and regular follow-up when you are in the maintenance mode. Well, this is the protocol anyway here in Belgium and I think also in Holland.
    • Guest
      Guest Guest

      Posted

      Hi there and thank you for the reply. I completely agree with your thoughts. 

      I have found this this source below very useful to help understand the numerous forms of haemochromatosis;

      https://aasldpubs.onlinelibrary.wiley.com/doi/full/10.1002/hep.20007i

      I would be interested to hear if anyone here in the UK has managed to get tested  for Ferraportin disease, please share if you have!

  • sheryl37154
    sheryl37154 Guest

    Posted

    451 ug/l - Ferritin levels?  Although my Hb is always high range, it is not necessary for most HH people.  WB, RB, Haematocrit, Neutrophil levels don't feature in necessary results for HH, they are an indication for something else.  My MCV was always high - but never considered important.  My MCV reduced after I started taking 100 mg of aspirin each day, or was it because I also started taking a good CoQ10, and Vit E deemed by HH researchers to be good for HH.

    What is your TS%?  That is important - a marker for HH.

    If I were you, I would be pushing for another diagnosis (more investigations) instead of relying on it being HH.  A majority of people have high ferritin for many other reasons.

    And it generally won't hurt you to go donate blood.  Just don't mention the HH word or high iron, etc.

     

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