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Ferritin and Trans saturation levels

Posted , 4 users are following.

l76057
l76057

What levels would be considered indicative of haemochromatosis  for a 40 year old female?

 

1 like, 6 replies

6 Replies

  • jmcg2014
    jmcg2014 l76057

    Posted

    i dont think age is a factor, but typically a level of around 1000 will make drs want to take action, although anything from around 500 would make them investigate
    • l76057
      l76057 jmcg2014

      Posted

      I thought age was a factor for women because information relates to pre and post menopausal women differently.  Also I thought 500 was the level for males but for females it is lower, but I may be wrong as we know so little.

       

    • jmcg2014
      jmcg2014 l76057

      Posted

      The mechanics are different for women yes and its why its not usually picked up till later on life,but there are no variations really dependant on age. Females are lower than males yes, for males actually anything higher than 250 is high, but few docs would act on a level that isn't significantly high,at least not immediately as high levels can mean other things. The only positive diagnosis comes from the gene test,which is typically given if ferratin levels remain high
  • sheryl37154
    sheryl37154 l76057

    Posted

    If you are still menstruating, pathologists in Australia report that ferritin >120 is indicative of haemochromatosis, BUT it must be in conjunction with Trans Sat % levels >45%.

    Otherwise high ferritin can be caused by inflammation, infection, fatty liver, alcohol but the TS% is generally in the normal range.

    There have been women in their early 20's on this forum reporting positive to haemochromatosis (genetically as well as high ferritin), so there are no rules.

    Post menopause, or during, when menstruation is not happening much, the indicative level is >200, and your ferritin level can sky rocket.

    It is important to have your dr monitor your levels regularly (6-12 monthly), and if the dr refuses to order treatment, go donate to the Blood Banks and do it at least every 3 months if your levels are still close to normal range.  Don't wait for it to increase to prove to your dr.  If you have haemochromatosis, your high TS% is proof enough, as long as you tell your dr you are donating blood to keep your ferritin down.  It could eventually get to the stage that donating every 3 months is not enough.

    If your levels are > than the ranges indicated above, you are entitled to a genetic test, so keep badgering for one.

    So you need to fully educate yourself on this disorder, contact and get info from your country's haemochromatosis assoc, take it to dr and be assertive.  Drs are often ignorant, or in denial, of this disorder - so you have to look after yourself.

    Let us know how you go.

     

    • l76057
      l76057 sheryl37154

      Posted

      Can you also tell me what is the difference between HH and GH?
    • sheryl37154
      sheryl37154 l76057

      Posted

      HH = hereditary haemochromatosis, GH = genetic haemochromatosis, therefore same thing.  You might also see HC, which does not indicate that it  has a genetic cause.

      I have also seen HH used for another totally different issue, but cannot remember off the top of my head.

      A lot of drs call high ferritin haemochromatosis, although there is no genetic proof.  It is just high ferritin (hyperferritinaemia) from other causes.

       

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