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Which tests for iron overload / iron toxicity?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by jason30, Feb 9, 2018.

  1. jason30

    jason30 Senior Member

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    Hi all,

    I wonder which lab tests are adviced to determine an iron overload and/or iron toxicity?

    I have the symptoms of iron toxicity and my iron saturation is high (51%).
    But my ferritin is good; 120 ug/L (range: 0 - 250).

    Thanks.
     
  2. Rossy191276

    Rossy191276

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    I think ferritin is the main marker for iron overload Jason but it is also a marker of inflammation... I have high ferritin about 400 saturation 60% but since I don't have hemochromotisis he says it is part of ME inflammation process that he commonly sees in patients... but I never see people talk about high ferritin or saturation on forums-- maybe should do a poll
     
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  3. Ravn

    Ravn Senior Member

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    Your saturation isn't super-high and may just be a one-off. But if you want to be on the safe side ask for a repeat of the iron panel plus the genetic test for haemochromatosis.

    There's a subgroup of haemochromatosis patients with normal ferritin but high saturation (I'm in it, more extreme levels than yours, typically 20-30 for ferritin and 80-90% saturation).

    If you do have haemochromatosis don't panic - unless you have a needle phobia: the treatment is regular venesections. Treated haemochromatosis isn't a big deal.

    If you don't have haemochromatosis and repeat iron panels keep on being high you know you'll have to look elsewhere for an explanation, such as inflammation.
     
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  4. jason30

    jason30 Senior Member

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    @Rossy191276 @Ravn
    Thanks both!

    Never knew it's a inflammation marker as well.

    Both of your levels are much higher, do you both also have the corresponding symptoms? (weight loss, joint pain, fatigue etc)

    I have checked my 23andme results and I don't have the genetic form.
    HFE C282Y: -/-
    HFE H63D: +/-

    I am heterozygous for HFE which indicates no problems for me, but there is a change I can give it to my children.

    I will keep monitoring it closely.
    Thanks again.

     
  5. jason30

    jason30 Senior Member

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    I had this prostate inflammation going on for 2 years and I needed a bunch of antibiotics. My feeling says it's still there, being a low inflammation marker for me.
     
  6. Ravn

    Ravn Senior Member

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    The only symptom I get is sore knees in the week or two before I'm due for a venesection. A couple of days after the venesection the knees are fine again. I don't know why the doctors insist on taking blood tests to check my iron levels, I can tell them exactly what they are just going by my knees, haven't been wrong in years with my predictions ;)
     
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  7. Learner1

    Learner1 Professional Patient

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    This is not the case. You may just have a milder form of hemochromatosis than those who have more of those SNPs.

    Having an iron panel done every 2-3 months would be helpful. Your saturation is high.

    Having iron overload can eventually damage your organs. More pertinently, it can feed common ME/CFS infections. My ME/CFS specialist encouraged ME to get my iron levels down.

    And, not to scare you, but high serum ferritin can also be a marker of cancer. My doctors checked me very carefully for a cancer recurrence when my serum ferritin level was over 600.

    The attached may be helpful to you.
     

    Attached Files:

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  8. jason30

    jason30 Senior Member

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    Hmmm I have sore knees as well, more then 3 years know. The sore knees is gone after doing some kind of detox plus taking binders.
    This happens to me after exposure of (mold) toxins. I am not sure if this is the cause of the sore knees, but it is noticeable.
     
  9. jason30

    jason30 Senior Member

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    Great, thank you for the documents, I will look into them.

    The thing is, only my saturation is high. My ferritin is fine and definately not high.
    So when do you have iron overloard / toxicity?
    I guess I have to keep monitoring those levels closely.

    I do wonder if I can do something about that high iron saturation?
     
  10. Learner1

    Learner1 Professional Patient

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    The documents I shared go through a number of scenarios, including iron overload with anemia.

    Good luck!
     
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  11. Ravn

    Ravn Senior Member

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    Agree with @Learner1 : you don't want to ignore high iron levels, they really can do damage.

    Before you panic, tests can fluctuate a bit, so don't freak out because of a single out-of-range result - but do monitor regularly.

    There's a lot of disagreement about what constitutes dangerously high transferrin saturation levels as these two documents demonstrate. The first claims that anything under 75% is probably ok, the second states that there are problems above 50%. I recall a third document that I can't find anymore giving an even lower level, 45% by memory.

    http://asheducationbook.hematologylibrary.org/content/2006/1/36.full
    https://www.sciencedirect.com/science/article/pii/S1542356517300563

    This sort of discrepancy leads to a lot of this for us patients: :bang-head::bang-head::bang-head:

    My own haematologist prefers to err on the lower side because of my ME.
     
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  12. Ravn

    Ravn Senior Member

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    The only thing I know of is venesection, and since you don't have a haemochromatosis diagnosis you may find it a struggle to get those.
    For most people venesections will lower both the iron and the saturation. And although your own iron levels are normal they are high enough to lose a little without becoming anaemic so it could be worth a try if your doctor agrees. Of course your levels may be due to something else altogether and venesections would be counter-indicated. The usual: discuss with doctor.
    And please, please, please, don't try to get around the doctor and become a blood donor. You do not want to give your blood - and potentially ME - to any other poor soul. When I have venesections my blood is destroyed as hazardous material.
     
  13. jason30

    jason30 Senior Member

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    Found this interesting photo in the documents you have shared:

    [​IMG]
     
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  14. jason30

    jason30 Senior Member

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    Yes indeed, it is unfortunate that there is no ambiguity in the ranges.
    Here in the Netherlands they say a level of > 50%.
     
  15. jason30

    jason30 Senior Member

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    Thanks Ravn!
    I have an appointment with my doc next week, I will discuss venesections and see what she thinks about it.
    I am aware of not donating blood, that doesn't make the world better! :)
     
  16. jason30

    jason30 Senior Member

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  17. jason30

    jason30 Senior Member

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    Question about colustrum. I have started with Colustrum because it helps with leaky gut.
    When I check the benefits of colustrum then I read about transporting iron and attaching to iron. But I have no idea if this is good for someone with a suspection of high iron overload?

    Colustrum benefits:
    Lactoferrin
    A mineral-binding carrier protein that attaches to available iron. Certain aerobic (grow in the presence of oxygen) bacteria, like E. coli, require iron to reproduce and, therefore, lactoferrin is an effective substance, when operating in the presence of a specific antibody, to impede the growth of some microorganisms in the gut.
    It transports iron to red blood cells.

    Transferrin.
    Another mineral-binding carrier protein that attaches to available iron and can act independently or in concert with lactoferrin to impede the growth of certain aerobic bacteria, particularly in the gut.​
     
  18. Learner1

    Learner1 Professional Patient

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    Note the "consider rare HFE mutations". I'm not HFE C282Y homozygous, nor are you. My docs decided against the liver biopsy and have been running the full iron panel with the tests you mentioned to monitor me. The ferritin hasn't always been in line with the rest of the iron panel... something to do with a lag in how the iron is being shuffled around.

    Also, have you been tested for chlamydia pneumoniae? It feeds on iron, and is another reason to lower your iron.
     
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  19. Rooney

    Rooney Senior Member

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    After 15 years of this, I have high ferritin and inflammation. Last lab was below 600, thankfully. Thanks for the topic, as I didn't know high ferritin it is a somewhat typical problem with us.

    In my reading of how to fix this indicated if all else fails, one may need to go on a plant based diet which I am trying my best to do. With gut issues, that means a low FODMAP diet which I have done before. Two doctors suggested this diet for SIBO. So, out with most beans (a little canned chic/garbanzo is OK), higher greens and discovering how to cook tofu.

    Ah, the learning experience never ends!
     
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  20. Learner1

    Learner1 Professional Patient

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    My body needs red meat and all the nutrients that come with it, carnitine, amino acids, zinc, B12, etc. All nutrients the metabolomics studies have shown we are short in.

    If one does have hemachromatosis, a vegetarian diet isn't enough to stem the tide and may, in fact, be counterproductive. Eating a nutrient dense diet with lots of plants and adequate amounts of wild fish and organic meat and eggs may be wise.
     
    Last edited: Feb 13, 2018
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