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High ferrintin

Posted , 4 users are following.

marie13049
marie13049

I have been having high ferrintin for the past two years.  Last test in feb it was over 700.  GP tested my transferrin saturation which was 40 and she said she is not going to do anything as I will always have high ferrintin due to generalised osteoarthritis.  She tested me for liver funtion tests and they all came normal, should  be concerned and insist I should see somebody else?  Thanks

1 like, 3 replies

3 Replies

  • Mrs._Z
    Mrs._Z marie13049

    Posted

    Have you been tested for hemochromatosis?  I have hemochromatosis and my liver function tests are normal.  I don't know if osteoarthritis can cause high ferratin levels.  Suggesting that a hemotologist be contacted as they have more knowledge on the blood and what and what isn't a reason for the high ferratin levels.  It's better to be safe than sorry.  Good luck Marie.
  • sheryl37154
    sheryl37154 marie13049

    Posted

    Transferrin saturation %  greater than 45% (female) is a marker for classic hereditary haemochromatosis (HFE).  Your dr is right in that respect.  And yes, inflammation, infection, malignancy, fatty liver and even an infection like a cold will raise ferritin (temporarily).  However, there are other forms of haemochromatosis, and it would be worthwhile to ask for these to be checked for.

    If you have extra padding around your middle, you are most likely to have a fatty liver - only diagnosed by a CT scan at this point.  To get rid of fatty liver, eliminate sugars and starches from your diet, and your ferritin levels will reduce.  Alcohol also causes a problem.

    In this case, you need to do your homework and be informed enough to know what to ask for.  Your country's haemochromatosis organisation, the iron disorders organisation, etc could be a good source for you.

    Also, Prof Pierre Brissot from Rennes, France, addresses all known forms of haemochromatosis.  Just google his name and read his studies.

    Good luck.

     

  • marie86421
    marie86421 marie13049

    Posted

    I had a low transferrin saturation when I was diagnosed. Mine was below 40% and I had a ferritin level of 5000.  I am negative for C282y, have one copy of H63d, which in theory means that I should not have loaded.  A genetic test for ferroportin was done and I was found to have a gene mutation on the FPN gene called SLC4A01.  You only need to have one copy of this gene to load iron.

    Just because your transferrin saturation is low, don't let the doctor fob you off.  Ferroportin disease (haemochromatosis type 4) presents with a low transferrin saturation.

    Perhaps you could ask to be referred to a haematologist where all the necessary tests will be done.   Having said that, some haematologists are not aware of ferroportin disease.  Doctors too, my doctor at the time had never heard of it.

    Good Luck

    Marie

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