High Ferritin Levels

Discussion in 'Fibromyalgia Main Forum' started by marciadc, Mar 14, 2004.

  1. marciadc

    marciadc New Member

    Reposting this message with a new title on advice from Darlene... I was diagnosed with Fibro/Chronic Myofascial Pain over a year ago because of chronic back pain, widespread muscle pain and fatigue. I am a "40 something" woman and I have just had a whole raft of blood tests. The only remarkable findings are that I have elevated blood ferritin levels, nearly 6 times the normal,enlarged red blood cells and low testerone and DHEAS. The doctor I am seeing at present is a medically trained and qualified GP as well as a certified herbalist and naturopath. He said there were signs of adrenal fatigue and thinks the high ferritin could be a sign of inflammation. But the other blood tests done for inflammation have come back normal.
    Does anyone else have a problem with elevated ferritin? What could it mean? Is it a common factor in Fibro??
    Marcia
  2. MemoryLane

    MemoryLane Member

    I am reposting my reply:

    Has the doctor considered Hemochromotosis? Do a Google search on the internet, there is also an American Society and a Canadian Society with contacts in Australia.

    This is more prevalent with people of Celtic descent, but any Northern European ansestry should be considered.

    This is a very serious condition and damage becomes irreversable the longer it is left unattended. Basically, it is iron overload and can damage your organs, particularly your liver, if not brought into check. My mom has this and the treatment is relatively simple, but can save your life.

    Lane




    <br>[<i>This Message was Edited on 03/14/2004</i>]
  3. steach

    steach Member

    If you want more info about lab tests, research labtestsonline.

    Steach
  4. marciadc

    marciadc New Member

    I have done a search of the hemochromatosis sites and have found one that lists possible symptoms. Many of them are similar to fibro symptoms and I do suffer with many of them.
    Do you know of any other conditions that cause elevated serum ferritin? And if it's not hemochromatosis is the treatment the same??
    The doctor just said that it was probably an inflammatory response and didn't suggest any follow-up. But from what I have read now I think I need to get some further tests done.
    Marcia
  5. MemoryLane

    MemoryLane Member

    An elevated Sed Rate (ESR) is another key to inflammation - Was yours elevated or on high end of normal?

    Some High Ferritin Correlations: (in no particular order)
    1.) Vascular Inflammation - Coronary Risk with elevated LDL & C-Reactive Protein, along with elevated iron levels
    2.) West Nile Encephalitis (WNE); West Nile Virus
    3.) Breast Cancer - Iron elevated; possible indicator of lymph node involvement and malignancy
    4.) Type II Diabetes - secondary to Hemochromatosis
    5.) Hemophagocytic syndrome (HPS);Relative to viral, bacterial or other organismal infection - such as Cytomegalovirus, Epstein-Barr Virus, HHV 6 & 8, Toxoplasmosis and Pneumocystis Carinii Pneumoniae
    6.) Liver Damage due to many causes
    7.) Oxidative Stress with possible Adrenal damage or tumor

    Marcia,

    I don't know what to say except none of the things are safe things to have. One thing leads to another it seems and they all relate to liver damage, usually permanent and life threatening. One thing is certain, high iron levels lead to serious liver and organ damage and must be corrected.

    IMHO - If it comes down to a "wait and see" situation, it is best not to wait!

    Please keep us posted,
    Lane
  6. marciadc

    marciadc New Member

    Thanks again Lane. My ESR reading was 5mm/hr reference range is 0-20 (Sorry it's in metric b/c I'm in Australia) So that was normal and the other inflammation measure is the C-Reactive Protein, I think and that was normal, too. I didn't understand the significance of the high ferritin levels at the time I got the test results last week as the doctor just put it down to inflammation b/c I have arthritis in addition to the FM/CMP. Then I wondered why that would be the case if those other tests ESR and CRP were normal.
    Now I'm wondering if there hasn't been an underlying iron overload all along even causing the arthritis?? I would have thought it would have been picked up before now though, but maybe other blood tests I've had in the past didn't screen for the ferritin.
  7. MemoryLane

    MemoryLane Member

    It is a cheek swab kit you can do at home. I do not know what is offered in Australia, but we have a lab here that does them in Denver, Colorado. Their name is Kimball Genetics. They sent me a pamphlet with my test kit that listed the Clinical features of Iron Overload:

    Iron accumulates first in the blood and then in various organs and tissues, especially the liver, thyroid, heart, pancreas, gonads and joints.

    It leads to irreversible organ damage if not detected and treated early.

    Damage manifests itself as cirrhosis of the liver, hypothyroidism, impotence, cardiomyopathy, diabetes mellitus and arthritis.

    Liver cancer occurs in about 30% of patients with cirrhosis.


    Early symptoms of hemochromatosis are most often non-specific and typically appear in middle age:

    Generalized fatigue
    abdominal pain
    joint pain, including arthritis


    They also stress that iron overload be treated, despite the results of the DNA testing.

    I also wanted to add that often times iron overload is overlooked or at times not apparent because of monthly blood loss during menstration. The treatment for iron overload is basically old fashion blood letting. Arrangements are made with a blood collection center to draw a pint on a prescribed schedule until the lab values are back in range. As far as treatment for the damage, that will depend on the extent and what was affected.

    Wishing you well,
    Lane



    <br>[<i>This Message was Edited on 03/17/2004</i>]
  8. marciadc

    marciadc New Member

    Special thanks to LANE...
    Had all my iron studies tests repeated and haemochromatosis genetic studies carried out as well.

    Ferritin now even higher and Transferrin saturation was 70% !!!

    I have just opened a letter from the Pathology Service telling me that I do indeed have haemochromatosis. I tested positive that is I am Homozygous for the C282Y Gene Mutation.

    With special Thanks to you Lane I can now do something about it. Am off to see another Doctor tomorrow for an urgent referral to a haemotologist and appropriate treatment. AT LAST an answer for some of these dreadful symptoms.
    So much for the psychiatrist who was telling me that I was my own worst enemy for not accepting my diagnosis of Fibromyalgia, that I should just accept it and get on with the advice I have been given. He even went so far as to say that I shouldn't be reading books and seeking out other opinions!
    I just hope the damage to my internal organs isn't too far gone.
    Marcia
  9. victoria

    victoria New Member

    everyone needs to read it!
  10. victoria

    victoria New Member

    everyone needs to read it!
  11. darude

    darude New Member

    Is doing blood test for ferritin blood test will this show this?
  12. darude

    darude New Member

    Is doing blood test for ferritin blood test will this show this?
  13. victoria

    victoria New Member

    posted to you on my other post - but -

    I think we need all the tests the American Hemochromatosis Assoc. suggests, including the DNA test, to rule it out. They say you could be anemic and still have it.

    all the best,
    Victoria
  14. victoria

    victoria New Member

    posted to you on my other post - but -

    I think we need all the tests the American Hemochromatosis Assoc. suggests, including the DNA test, to rule it out. They say you could be anemic and still have it.

    all the best,
    Victoria
  15. learningcurve

    learningcurve New Member

    Is the test for hemachromatosis fool-proof? I had a blood test for it and found that I was a carrier only. However, my ferritin levels keep going up (now at 558). If this is due to RA, could blood letting still help?
  16. victoria

    victoria New Member

    http://www.americanhs.org/&lt;BR&gt;
    &lt;BR&gt;
    There is more than one test that needs to be run to determine it. I think that if you're found to be a carrier, you likely need to keep testingyourself because it can develop at any time in your life, not just when one is older. So while you may have initially not tested positive, you might be now...&lt;BR&gt;
    &lt;BR&gt;
    I haven't check the site recently, but they used to have a way to order all the pertinent tests so you could take the requisitions to a lab using their own doctor instead of relying on your GP. Not all docs know which tests are necessary, there are more than one.&lt;BR&gt;
    &lt;BR&gt;
    good luck, let us know what happens...&lt;BR&gt;
    &lt;BR&gt;
    all the best,&lt;BR&gt;
    Victoria