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Newbie high iron saturation levels need some advice ☺

Posted , 5 users are following.

allison1984
allison1984

Hi my name's Allison and im 33yrs old for the last 5 or so years my iron saturation levels have been slowly going higher and higher , my old doctor tested me for haemochromatosis and it came back as im only a carrier.

From everything that ive read it says i shouldn't have high irin levels yet it is ?

My ferriet level is normal

Does anyone know what this could mean ?

Would other vitamins and minerals become unbalanced from iron saturation being high ?

I do have symptoms such as fatigue , early onset of joint problems , increased anxiety , eye problems and other symptoms

I have been diagnosed with Gilbert syndrome which I know isnt a concern .

Just hoping someone can offer some insight into this my old doctor just didnt help that much because he said im just a carrier .

Thanks in advance .

1 like, 5 replies

5 Replies

  • haircrazydaisy
    haircrazydaisy allison1984

    Posted

    Hi Allison. Which gene mutation do you have - C282y or H63d? If you read past posts on here you will come across several instances where carriers actually do have symptoms & do load iron. Most GPs don'the accept this to be a fact. C282y seems to be the gene that is now more recognised as being dangerous for carriers. However, I read a very interesting article which said that H63d can also be very damaging & they called it the "hidden" mutation as iron was not necessarily too high in blood tests but it was loading straight into organs.

    As your iron saturation is high, I would imagine all is not well. You sound to have similar symptoms to me but I carry two mutated genes. I don't know the symtoms of Gilbert's disease, though.

    Sheryl will definitely be able to give you some very sound advice.

    Good luck.

    • allison1984
      allison1984 haircrazydaisy

      Posted

      Hi thank you so much for your reply ?

      I tested positive for the H63d gene , every few years my iron saturation level has risen 10 % so its confusing.

      Iam seeing a new doctor now and I'm having a follow up blood test to see if iron saturation has gone higher .

      I just feel like my old doctor palmed me off .

      Thanks again

  • sheryl37154
    sheryl37154 allison1984

    Posted

    Thanks, haircrazydaisy.  Allison, you say your ferritin is normal.  It is ferritin that is absorbed into joints and organs to cause the problems you complain of.

    If you read the Gilbert Syndrome forum you will find that a lot of people with this disorder are not well at all and have a lot of symptoms, despite what drs say about it.

    From what you say you have a high iron, not ferritin.  There could be other problems causing that and your dr needs to investigate your issues.  If your copper is not right, it can cause increased absorption of iron, not necessarily leading to high ferritin.  That is just a suggestion, if it is not Gilberts Syndrome that is causing your problems

    • allison1984
      allison1984 sheryl37154

      Posted

      Hi sheryl37154

      Thank you your reply

      I've just come my doctor she is doing a iron studies test again , she did tell me that my last test 7 months ago was down 10% so thats great news its still abnormal though.

      She said that carries can have high iron levels and she will test me again and then go from there .

      The high copper you mention is interesting .

      Is there a way to test copper ?

      I mentioned the Gilbert's syndrome today and she said my liver tests were high still but it doesn't cause any symptoms .

      All very annoying.

      Thanks again for your reply ???

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