Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Iron testing in the tissues

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Peyt, Jun 15, 2017.

  1. Peyt

    Peyt Senior Member

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    Hi,
    Does anyone know how they can test Iron level in the tissues?
    My ferritin was sort of on the high side (216) and eventhough one of my doctors thinks it's just a result of gut
    infection (such as SIBO)which is causing inflammation, I talked to another practitioner who thinks I might have Iron over-load in the tissues, particularly pancreas and liver.
    So I am wondering, how can one test for iron overload in the tissues?
    Thanks so much,
     
    Last edited: Jun 15, 2017
  2. Kati

    Kati Patient in training

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    Hi @Peyt if your ferritin is high (in the blood) then your iron levels would be high in the liver because this is where iron is being processed. Doing a liver biopsy would be overkill at this time and definitely risky. The best you can do is visit a physician knowledgeable in that area. The doctor would also assess your hemoglobin, liver enzymes and other blood tests to ensure everything else is fine.

    Some people need to donate blood to control their iron levels (in our case the blood would be discarded)

    Here is a publication relating to high ferritin:
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093720/
     
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  3. Peyt

    Peyt Senior Member

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    Thanks so much,
    This site also mentions "Inflammation" as a possible cause but does not elaborate as to what kind of inflammation (inflammation is a broad term), which is what my initial doctor had suspected. It's interesting that it mentions fatty liver and I did an ultrasound last year which showed a mild none alcoholic fatty liver.

    I am looking at my genetic test and I have the following genes related to HFE:
    rs13194984(G;G)
    rs2069861(C;C)
    rs1457451(A;G)
    rs29880(A;A)

    rs2660917(C;T)
    rs1572982(G;G)
    rs17270561(C;C)
    rs4820268(A;G)
    rs5756506(C;G)
    rs2718812(A;G)


    I am going to go down to the blood donation clinic tomorrow and donate blood.
    The 2nd practitioner that I saw, his name is Morley Robbins, he is been making a lot of noise on the social media lately ... His protocol does also include donating blood along with a few supplements with the main one being Magnesium which I was already taking.

    Your thoughts are appreciated.
     
  4. Ravn

    Ravn

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    You can also get a blood test to see if you are genetically predisposed to iron overload (haemochromatosis or hemochromatosis, depending if you want to spell UK or US). It's relatively common, about 1 in 200-300 Europeans have it, don't know the figures for others. It's also relatively easily treated by giving blood, as Kati said, and doesn't cause too much trouble if treated. Knowing your genetic staus on that will help your doctors decide if your high ferritin is more likely to be the temporary effect of an infection or something more. Your level is a bit high, but not worryingly so. The haemochromatosis folks usually don't start worrying about organ damage such as liver damage until ferritin reaches 1000 - but they'd want to treat you well before you get to that level!
     
  5. Kati

    Kati Patient in training

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    Remember that the blood cannot be donated to the blood bank if you have ME as it would have the potential to make someone sick.
     
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  6. Peyt

    Peyt Senior Member

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    What is ME?
     
  7. Kati

    Kati Patient in training

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    Myalgic encephalomyelitis also known as chronic fatigue syndrome. Once in a while you will encounter "the damn disease", and then you'll know.
     
    Peyt likes this.
  8. alicec

    alicec Senior Member

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    None of those SNPs are relevant.

    The most common SNP associated with haemachromatosis is the homozygous variant AA of rs1800562, aka C282Y.

    Less commonly, and less dangerously, the homozygous variant GG of rs1799945, aka H63D, is associated with the disorder.

    There are a couple of other very rare variants but these are the two tested for if you get a genetic test through your doctor.

    23andme tests for them also (perhaps they need to be unlocked or are hidden as i numbers).

    Remember that only about 10% of elevated ferritin is associated with iron overload.

    A complete iron panel would give better insight into the likelihood of overload than an isolated ferritin measurement.

    The most sensitive single measure of iron overload is transferrin saturation. >45% is strongly suggestive of iron overload, >55% is frank overload.

    Here is an article which may be helpful.
     
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  9. Peyt

    Peyt Senior Member

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    Here is the rest of my Iron levels , if that helps.


    upload_2017-6-16_0-54-15.png
    upload_2017-6-16_0-55-53.png
    upload_2017-6-16_0-56-44.png
     
  10. alicec

    alicec Senior Member

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    With a transferrin saturation of 28% you don't have iron overload.
     
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  11. Peyt

    Peyt Senior Member

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    Honestly, that's what I think too... But this guy (Morley Robbins) tells me that I do... I am still considering donating blood as that shouldn't hurt anything....
     
  12. Valentijn

    Valentijn Senior Member

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    It can hurt other people, if you have any health problems yourself.
     
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  13. Crux

    Crux Senior Member

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    Morley Robbins is also a proponent of copper for health, although he does write about the toxicity factor a bit much imo.

    When copper is low, iron can accumulate in organs, the brain included. This may not show up in blood iron panels, but it can cause a great deal of fatigue as well as neurodegeneration.

    He writes that the optimal ceruloplasmin levels should be 33-35 mg/ dL.

    I haven't been able to find any other opinion about optimal ceruloplasmin or serum copper, but here's his anyway.
    http://www.infantreflux.org/iron/

    Ceruloplasmin is a copper carrying protein.
     
    Last edited: Jun 16, 2017
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  14. Peyt

    Peyt Senior Member

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    Well the only health problems I have been diagnosed with is SIBO. I have never been diagnosed with CFS per se although I am tired all the time. I have also tested myself for STDs and I have none. So how do I know if I have health problems that can hurt others which correlates to blood?
     
  15. Peyt

    Peyt Senior Member

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    Yes he is a proponent of copper. But he does not tell you to take copper direct. Instead he says to take food sources of Vit C and B along with Magnesium to bring up the copper and hopefully reduce ferritin. For me, he said to do
    the first 5 things on the "Start section" http://gotmag.org/the-root-cause-protocol/
    Honestly, I am not a big fan of one size fit all protocols, but I said I will try it.
     
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  16. Crux

    Crux Senior Member

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    OK, I just hope you're getting enough copper in diet.

    Taking copper glycinate brought my iron overload into normal range, so I'm convinced of its efficacy.
    Copper also stopped my orthostatic intolerance.

    Fatigue is better, but , I believe it will take a lot more time to straighten out my brain.
     
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  17. Peyt

    Peyt Senior Member

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    Well, having SIBO makes absorption worst, so Doctors always get surprised when they see on the lab work that both
    my copper and Zinc are on the low side... because usually one is high and the other low as the 2 minerals have sort of a yin/yang relationship.... But in my case, I am low on many minerals and vitamins due to poor absorption.
     
  18. Crux

    Crux Senior Member

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    Yeah, I had SIBO too, rotten.
    Copper is antimicrobial.
    Since taking it, I'm getting a slowing of infections, but still getting them.

    Zinc helps a lot with the pain and bloating, but some microbes like it. The body will withhold it from them.
     
  19. Peyt

    Peyt Senior Member

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    Well when I had my appointment with Morley, he said something interesting.
    I told him that I do well with HCL when I take with food. It reduces my bloating and SIBO problems,
    He asked do I know why I have low stomach acid, I said no, he said because your pancreas is not making enough bicarbonates(due to iron in the tissues) and thus stomach reduces it's acid production automatically to match that ratio of bicarbonate... this does make sense because I noticed when I take HCL, eventhough it helps with digestion, my body becomes too acidic to the point of pain in my joints and irritation, so I was taking this other alkaline tea twice a day to counter the acidity.... so his theory on that was interesting.
     
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  20. Crux

    Crux Senior Member

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    That is interesting... I'll look it up.
    There was an extended period of time that I was helped with HCl and other acids, but then, like you, I developed extreme pain, everywhere.

    HCl helps with nutrient absorption, especially iron.
    There was a time when I couldn't tolerate anything acidic or fermented - anything that increased iron absorption.
     

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