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Should I wait for re-testing, or push for sooner?

Posted , 4 users are following.

m10708
m10708

I had high ferritin in Jan 2017 (229 ng/mL), high transferritin saturation last week (58%), and this was what my doctor said when I asked about hemochromatosis:

"given that in 2011, there was evidence of low iron levels, chances of you have hemochromatosis is unlikely - suggest stopping all supplements x 3 months and rechecking iron levels."

I have been taking an iron supplement (just stopped yesterday when I found out about the high ferritin level from months ago, that no one told me about!). Other relevant numbers: Iron: 156 ug/dL, TIBC 270 ug/dL. Also, female, stopped menstruating in 2009.

My levels aren't nearly as high as some I've seen here, and I won't be making it worse with continued supplements, but I don't want to delay treatment if it is a problem, and contributing to my fatigue.

I'd appreciate any thoughts.

Thanks!

1 like, 6 replies

6 Replies

  • Chris8968
    Chris8968 m10708

    Posted

    Ferritin levels up to 300 are within the normal range.
    • m10708
      m10708 Chris8968

      Posted

      Interesting. The standard range listed on the test results said 9 - 120.
    • sheryl37154
      sheryl37154 m10708

      Posted

      300 is for males, but also for women post menopause.

      I, too, have found that test results do not always take into account the woman's age.

       

  • sheryl37154
    sheryl37154 m10708

    Posted

    Unless you have some condition that indicates otherwise, there is no harm and usually beneficial to donate blood every 3 months.

     

  • Pudding80
    Pudding80 m10708

    Posted

    m10708,

    My consultant won't let my serum ferritin level go over 50 as she says I will have HH symptoms.

    3 years after the menopause I was diagnosed with HH (C282Y homozygous) - this was 3 years ago.

    My consultant is not so bothered about my iron levels as these can vary a lot with people with HH and I don't think is related to it.  High levels of serum ferritin and transferrin saturation are a serious problem with HH as the body can eventually be damaged irreversibly.

    As I have HH which means my ferritin will be high without venesection treatment. I would never take iron tablets, or even vitamin tablets coated in iron - as most are.  I have found a multi-vitamin (for post-menopausal women) that has no iron but I often forget to take it.

    Where I live, a gene test is carried out if the ferritin level is high and a haemotologist oversees the treatment plan.

    .

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