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Ferretin vs Transferrin Saturation

Posted , 5 users are following.

paminutah
paminutah

I have a question and I hope I can ask it correctly.  I got diagnosed with the hereditary form of hemochromatosis while I was in cancer treatment a few years ago.  I have it checked on an annual basis and my ferretin has always run between 450 and 500 and my TS has been under 50.  It jumped to 78 this year and now my internist is recommending plebotomy once every two weeks with a recheck after 8 weeks.  Is it the 78 number that prompted treatement?  A combination of both?  I'm confused rolleyes

1 like, 9 replies

9 Replies

  • jmcg2014
    jmcg2014 paminutah

    Posted

    As far as I was aware it's the ferritin levels that trigger treatment, and those levels aren't really that high. Maybe there are other factors with your history which makes them want to do it,I think you'd need to check with them why they want to act now
  • Mrs._Z
    Mrs._Z paminutah

    Posted

    I agree that it's the ferritin that's of concern.  My Dr. only watches the ferritin as I am not tested for the TS during treatment. If you are seeing a hemotologist , they can give you the best answers and it doesn't hurt to ask and ask questions.  Good luck.  
  • sheryl37154
    sheryl37154 paminutah

    Posted

    A TS% >45 indicates true haemochromatosis.  When they diagnosed you before, did you have a genetic test?  If so, what HFE genes do you have.

    The increase in TS% has probably triggered the phlebotomies.  For your wellbeing, hey should really have started earlier given your ferritin as it was >200 for a woman, and >300 for a man .  Prof Pierre Brissot regards TS% >75 as toxic.

    Just checking, do you have Western European heritage?  Your pen name kind of indicates another ethnicity.  If you are of a different ethnicity, your haemochromatosis could be a different kind.

     

    • paminutah
      paminutah sheryl37154

      Posted

      Thank you for your input.  That exactly answers my question.  I am a white girl from the US (grew up in southern California) with European descendents.  I now live in a ski resort town in Utah.   I had the genetic test done a few years back and the notes say I am compound heterozygous HFE with H63D and C282Y.  I have found the treatment protocol under the Iron Disorders Institute and it looks like I'm well within the treatment guidelines.  After a lot of thinking last night whilst I couldn't sleep, I decided I will go ahead and request a referral to a specialist instead of just moving ahead blindly with treatment thru my internist and unanswered questions. Her knowledge is limited and I would feel better knowing I'm in capable hands.  
    • sheryl37154
      sheryl37154 paminutah

      Posted

      I get it now - pam-in-utah!  It sounded Indian or something and they do have a different form of haemochromatosis.

      My son is C282Y/H63D, I am C282Y/C282Y, and husband H63D/H63D so we have the full spectrum.

      Have you hit menopause yet?  That is when hereditary hemochromatosis starts moving.  It is a good idea that you seek out a specialist - although probably the best you can do is a hemotologist.  Check your local hemochromatosis assoc website, call them and ask if they know of anyone to be referred to in your area.

      Ask for copies of all your blood tests so that you can self evaluate.

      Good luck with it all.

       

    • terrihigashi
      terrihigashi paminutah

      Posted

      Go to a hemotologist. I am in Cailifornia. Regular doctors, really don't know too much about it. They know what it is, but they do not know the exact numbers that need to be treated.  In the united states they do accept blood that has hemochromatosis at blood banks, you should at least go donate once in awhile if insurance is an issue.
  • paminutah
    paminutah

    Posted

    I love the forums available to people.  They are always so helpful.  Will be following up with a specialist to get some real answers before starting treatment.  Thank you.
  • terrihigashi
    terrihigashi paminutah

    Posted

    You know that HH causes different forms of cancer. If you have your ferritin levels down there is no reason why you can't expect to live a normal long life.
  • paminutah
    paminutah

    Posted

    Finally found a hematologist on my insurance plan.  I have an appointment on Thursday and have forwarded all of my blood work from the last 3 years.  

     

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