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Ferrintin 501 transferrin saturation 45%

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marie13049
marie13049

My ferrintin is 501 that's the highest has been.  Saturation is 45%.  Three months ago ferrintin was slightly lower but saturation was 50%.  Iron studies came back normal. GP told me she will refer me if the levels are high.  She does not seem concern and will not refer me shall I press for a referral to a haematologist> I think she is waiting until ferrintin gets to 1000. Also it is difficult to know why the increase as I suffer grom arthritis as well.  Thanks

1 like, 8 replies

8 Replies

  • sheryl37154
    sheryl37154 marie13049

    Posted

    Go to Iron Disorders Institute web page, then helpful forms, then hemochromatosis reference charts.  There is information on that you can take to your dr for her information.

    Have you had a genetic test to prove you have hereditary hemochromatosis yet?  A TS% >45 for a female is usually indicative as well as the ferritin level.  You do NOT want to wait till your ferritin reaches 1000!!!!

    Gather as much information about HH as you can get - your country's hemochromatosis association can be helpful there and take it along to your dr.

    Good luck

  • claresweety
    claresweety marie13049

    Posted

    Hi my ferritin was 511 and I was referred and having treatment. Taking blood every fortnight ferritin is now down to 112. I soul ask for referrel and keep pushing x
    • marie13049
      marie13049 claresweety

      Posted

      Thanks.  How did you get your GP to refer you mine is reluctant to do it?  What's the highest your ferrintin and transferrin saturation have been?  She told me with the genetic one my ferrintin wouul  be much higher.  Mine fluctuates up and down for last 4 yrs.  Lowest it has been was 325.  Did you have a genetic test?

    • claresweety
      claresweety marie13049

      Posted

      My doctor was really good just referred as I was so tired and achy all the time.had my genetic test and it was positive. When theyhtheyhecked my ferritin it was down to 390. Now I have blood removed every two weeks. Get a 2nd opinion I would. X
    • sheryl37154
      sheryl37154 marie13049

      Posted

      Are you saying that you do not have a genetic confirmation of haemochromatosis?

      If you had hereditary haemochromatosis, your ferritin levels would not go down unless you lose blood.

      If you do not have HH, your ferritin levels could be from a fatty liver - very common.  It does not show up in LFTs.  To treat fatty liver, eliminate all sugars and starches from your diet.  These convert to fat in your liver when you do not use up that energy you have consumed.

      2 ladies in my group who were heterozygous (should not be iron loading) and also were unable to do venesections for different reasons, eliminated sugars and starches from their diet, and their ferritin fell by the hundreds.  Please note, they did not have classic haemochromatosis.

       

    • marie13049
      marie13049 sheryl37154

      Posted

      No I do not have a genetic confirmation. GP is not interested going to discuss results with her again as liver functions tests alt is 47% two months ago it was 20%.I have been consuming turmeric paste daily to reduce inflammation but I think it is increasing my ferritin levels and liver alt never had any issues with liver function tests before. I am not sure whether I fit the criteria for genetic testing as my ferritin goes up and down. At least go should seek advice from a consultant. Previous go did write to consultant and was told not to be concerned until transferrin saturation is over 45%.

       

    • sheryl37154
      sheryl37154 marie13049

      Posted

      Try to find out why your Alt has those results.  It may not be anything to do with  haemochromatosis.  Your ferritin level may have increased because something is going on with your liver.  Forget the tumeric until you are clear on what is going on.

       

    • peggy96967
      peggy96967 sheryl37154

      Posted

      After my 1st 12 phlebotomies, my ferritin went from 1,000 to about 1300. with the saturation going from around 70 to close to 90.  After 2 more years of bi-monthly and then monthly phlebotomies, the ferritin is now down to 30 with the saturation % being 12.
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