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high ferritin?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by helen41, Jan 15, 2011.

  1. helen41

    helen41 Senior Member

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    Sleepy Hollow Canada
    does anyone have high ferritin levels? Is that associated with ME/CFS? 18 months ago I had iron shots because my iron and ferritin were very low. A year ago they retested, and my ferritin was high, at 243. Now it's 379, but I don't take iron. Any ideas?
  2. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi helen41, have you been tested for Haemochromatosis? Its a long shot because of your earlier low ferritin levels but the first test could have been wrong. Its a genetic disorder but treatable. In the late 90s it was noted in a CDC meeting that one of the genes causing it was very common in CFS. Bye, Alex
  3. rlc

    rlc Senior Member

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    Hi helen41, unfortunatly there are alot of causes of high ferritin it can be raised by things like infection, but it is odd that you went from low levels and then it has kept on increasing with out taking more iron, have they ever done a test for trans ferrin saturation? it far more acurate then ferritin and iron for looking for conditions like hemochromatosis, thalasimia etc. If you have anymore information post it here and i'll see if i can help, To answer the other question is it associated with ME/CFS, no your not supposed to fail any basic tests to qualify for this diagnosis, so both low and high ferritin levels imply that there is probably something else going on.

    All the best
  4. helen41

    helen41 Senior Member

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    Sleepy Hollow Canada
    thanks. I'll need to do some reading before I see the Dr next week. There's always something...
  5. August59

    August59 Daughters High School Graduation

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    Upstate SC, USA
    I think Cloud had hemochromatosis, but I could be confused too. You might send him a PM and see. I think Dr. Peterson found it.
  6. rlc

    rlc Senior Member

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    Hi Helen41, I have Hemochromatosis, I was misdiagnosed with CFS for just under 2 decades, because the doctors were useless i had to learn about it myself, end result is i know alot about hemochromatosis and quite alot of the other diseases that cause high ferritin, so if you've got any questions let me know.

    I've entered increased Ferritin and chronic fatigue into diagnostic software and it comes up with 13 possible causes, most of which have been known to be misdiagnosed as CFS, maybe if you take theis list to your doctor they would be kind enough to test for these conditions info here http://en.diagnosispro.com/differen...ased-chronic-fatigue/11876_25271-154_154.html

    Hope they find the answer soon, All the best
  7. helen41

    helen41 Senior Member

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    Sleepy Hollow Canada
    that's so nice of you, Ric! I saw another of your posts and followed the link to the iron disorders institute and left a question.
    I had quite a delayed, dramatic reaction to the iron shots I had and now the whole injection area is sunken and I have muscle atrophy there. I do wonder if the two things could be related somehow, like was the iron encapsulated and now is leeching out? Maybe that is a bit out there but it does seem like an odd coincidence
    The frustrating thing is my doc (who gave me the injections) says it's a common side effect of injections, and I don't have any other Dr to look. Physio says they've never seen anything like it, and as a former nurse neither have I. Can't be that common
  8. rlc

    rlc Senior Member

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    Sorry to hear you have a unhelpful doctor, i've had a quick look on the net and can't find anything about muscle atrophy and iron injections, but then doctors do have a habbit of making things up when they don't know whats going on!

    Interestingly they have been reports of people with Lupus, and rheumatoid arthritis having some very strange reactions to iron shots and both of these conditions are on the diagnosispro list, link here http://www.medscape.com/druginfo/mo...e=Iron Dextran Inj&monotype=monograph&secid=5 maybe it would be good to get these things tested first, but I totally understand how difficult it is to get anything tested for with some doctors. A good one should be able to test for all the conditions on the list in one appointment Sigh.

    If you have anymore symptoms our failed blood tests let me know and i'll see if i can find more info on them, and if i find anything muscle atrophy and iron injections, i'll post it here.

    All the best
  9. rlc

    rlc Senior Member

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    Hi helen41, tracked it down iron injections can cause muscle atrophy. Local: Injection site reactions (cellulitis, inflammation, pain, phlebitis, soreness, swelling), muscle atrophy/fibrosis (with I.M. injection), skin/tissue staining (at the site of I.M. injection), sterile abscess. This is from the mercksmanuals which is a very reputable source link here http://www.merckmanuals.com/professional/print/lexicomp/iron dextran complex.html It dosen't however explain your continually rising ferritn levels, so i think if you can it would be a good idea to get a doctor to investigate the conditions listed on the diagnosispro.

    All the best
  10. wciarci

    wciarci Wenderella

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    Connecticut
    Hi Helen41,

    I would look up tests for hemochromatosis and note the 5 blood tests that should be done as well as the genetic tests. I am heterozygous for the illness (very common among the Irish, by the way, 1 in four or five carry the gene). My iron levels are watched very closely and I was told not to take iron. A certain percentage of heteros will develop the illness. Women don't usually develop overload until menopause. It is very serious. Sometimes people with the disease will have low iron levels at times because the iron is bound up and not available. Good luck.

    Wendy

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