The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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copper and ceruloplasmin deficiency

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by datura, Mar 11, 2018.

  1. datura

    datura

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    Does anyone have experience with having low blood copper and ceruloplasmin levels? Or know of what causes this? Wondering if it is something like malabsorption, Wilson's disease, a result of SOD2 mutation, etc. *I have been supplementing zinc, copper, cod liver oil, vit. C (which supposedly increase ceruloplasmin), but last labs revealed that zinc, copper, and ceruloplasmin levels have decreased further... what to make of this? Thanks!
     
  2. nanonug

    nanonug Senior Member

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    I don't exactly have experience with this but low serum copper and ceruloplasmin levels are consistent with Wilson's Disease. Additional food for thought here: http://clinchem.aaccjnls.org/content/51/8/1558
     
  3. datura

    datura

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    @nanonug - Thanks for the article. I did have a thorough eye exam recently, though I didn't ask specifically to look for KF rings. Hoping to get a 24-hour urine test done. My ALT and AST have always been in range, ALT was on the higher end but that might be due to normal fluctuations. I have a lot of neuro symptoms and psychiatric symptoms but could be unrelated.
    Also calculated my unbound/free copper (non-ceruloplasmin), which is high, and has been high the 5 times my levels have been checked. High unbound copper exerts toxic effects. Paradoxical to have a deficiency and toxicity at the same time. Interesting that copper is necessary for ceruloplasmin production, but does anyone know how to get the balance right? That is, raising ceruloplasmin more so than copper, to reduce unbound copper?
     
  4. nanonug

    nanonug Senior Member

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  5. datura

    datura

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    @nanonug - thanks for looking into that; interesting. I don't think I have iron overload because my ferritin is consistently low. My serum iron is consistently high, but I think high ferritin is the measure of iron overload, right?
     
  6. nanonug

    nanonug Senior Member

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    Low ferritin with high serum iron is weird. Unfortunately, it's not possible to get a complete picture of iron status without a full iron panel. This would be:
    • Iron, Serum
    • Iron Saturation
    • Total Iron Binding Capacity (TIBC)
    • Unsaturated Iron Binding Capacity (UIBC)
    • Ferritin
     
    keenly likes this.
  7. datura

    datura

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    @nanonug - the last iron panel I had showed high-end serum iron, slightly higher iron saturation, low-to-mid range TIBC, low-end UIBC, low ferritin. I have recently had macrocytic anemia (with normal B12 and folate) which can be caused by copper deficiency.

    I was reading that although hematological abnormalities can normalize after supplementing copper, neurological damage can be irreversible. Does anyone know if that is only seen in patients who have an extremely low copper status? My copper and ceruloplasmin levels are not significantly below range. My neuro symptoms are paresthesias in my feet, legs, and palms, and loss of balance / ataxia. Last year it was found that I have vitamin B6 toxicity, which creates neuropathy that is reversible. However, it has been nearly a year and neuropathy hasn't improved so they are investigating other potential causes. I'm trying to find out if copper deficiency-induced myelopathy and peripheral neuropathy is reversible.
     
    Last edited: Mar 15, 2018
  8. nanonug

    nanonug Senior Member

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    Has the macrocytic anemia resolved? There is a bunch of possible causes for this condition, including somewhat common mutations in genes that metabolize folic acid. Have you seen a hematologist?
     
  9. datura

    datura

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    @nanonug - Yes the macrocytosis has resolved as of the last couple months, which is strange because serum levels have gone down. I'm seeing a new ND, next looking into RBC copper. Also ordered a 24-hour urine test for copper and zinc. Before the macrocytosis was linked to copper deficiency, I was taking methylcobalamin and methylfolate (Metafolin). My serum folate levels were low in November, but after supplementing and testing RBC folate, levels were on the higher end.
     
  10. Eastman

    Eastman Senior Member

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    @datura

    What happened to your trials with vitamin B1/thiamine? I ask because it has been suggested that high B12 and folate can also be caused by thiamine deficiency. And copper deficiency has been associated with thiamine deficiency.

    I assume you're already aware but anyway, among the nutritional deficiencies that can cause neuropathy, thiamine deficiency is one of them.
     
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  11. datura

    datura

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    @Eastman - I almost totally forgot about the thiamine! At initial testing, it was 56 (normal range 67 to 200), then I supplemented heavily (mostly thiamine HCl but also a little of benfotiamine) and it nearly doubled to 108. After that I greatly reduced the supplementation and the thiamine levels dropped to 77, not quite as low as initially. I do wonder what they are now that I only supplement one day a week with thiamine HCl.
    I hadn't made that connection, thanks for pointing that one out!
     
  12. nanonug

    nanonug Senior Member

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  13. datura

    datura

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    @nanonug - thanks for the recommendation!

    Some new labs... RBC zinc normal, mid-range (serum zinc on low end). RBC copper and serum copper very bottom of range, plasma copper below range.
    I expected the RBC zinc to be low based on low-ish serum zinc. I do wonder what RBC iron would be, since it seems copper metabolism is the driving force. Now I'm questioning if malabsorption is really an issue here -- my labs reflected a significant positive response to folate and B12 supplementation. Dietary consumption isn't the issue -- I'm getting at least 200% DV of copper every day, and more lately because I've added back in 80-90% cacao dark chocolate.

    Having difficulty finding pertinent literature. Thoughts?
     
  14. Nine lives

    Nine lives

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    My RBC copper was at low end last year and recent HTMA (hair analysis) shows an excess zinc to copper ratio with copper low.

    I eat lots of dark chocolate and have mid range ceruloplasmin. So I needed to supplement - doing Mitosynergy copper. Note they sell small vials that can be placed in other supplements. Time consuming but I do this now. Since last year my skin has improved - especially my palms (skin was literally peeling away) and my facial skin is no longer like sandpaper!
     
  15. nanonug

    nanonug Senior Member

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    Malabsorption might definitely be an issue. Do you supplement with zinc? If yes, I'd stop as it partially blocks copper absorption. It might be worth increasing copper consumption and see if it happens. You may want to see a doctor and see if you can get IV copper. Other than this, I don't know what else to recommend.[/user]
     
  16. datura

    datura

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    @Nine lives -- I haven't used MitoSynergy, but I had been supplementing ionic copper at the recommendation of a provider. As you supplemented copper, did your ceruloplasmin levels raise? How was your unbound/free copper?

    @nanonug -- I was supplementing with low-dose zinc, off and on and not every day; however, I was also supplementing copper. Despite low serum levels of both, it seems that my cells were using the zinc but not the copper, which confuses me. I know they antagonize each other, but does zinc more easily "win" in terms of absorption? I might have been taking the incorrect ratio -- but if I were to take supplements out of the equation, through my diet I'm consuming:
    200-300% DV copper
    100-150% DV zinc
    300-400% DV manganese
    100-150% DV iron
    300-400% DV magnesium
     
  17. Nine lives

    Nine lives

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    My ceruloplasmin was good before starting and the reason I went with that type of copper is that I believe it claims to bypass the ceruloplasmin. I am not sure of claims, but they have a website. For me, I ate a lot of copper and had good ceruloplasmin, but my RBC copper was tanking. I needed something that would get into my body. RBC copper had increased as of last year (but still low compared to zinc) and at some point this year I will retest, but since I tend to too few RBCs having too many blood tests is not smart!
     
  18. leocolo25

    leocolo25

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    Hi, I've a question about Copper. I tried it because I'm very fatigue, and I've seen that with my supplements (multivitamin with low copper, and use of Molybdenum and Carnosine in plus to the multivitamin), i can be deficient in it. I immediately had INCREDIBLE ENERGY that day, taking 2 mg of Copper, but became immediately costipated.
    My first idea is that Copper , as antifunfungal had attacked Candida, but there are so many bad reputations about copper supplements that continuing , scares me. Can you help me?
    Tank you in advice
    The strange is that I was deficient in Zinc in hair test and blood , so Copper would have to aggravate this problem, not help me , with energy....right?
     
  19. SherDa

    SherDa

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    I believe vitamin A stimulates ceruloplasmin production so that may be worth reading up on, especially if you have vitamin A deficiency symptoms.
     
  20. vb2005

    vb2005

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    I think it is the opposite - without copper the body cant use zinc, you can get more info in this video
    also this one
     

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