Elaine and Janie: The High Copper Detox Queens Share Their Stories

posted from: https://stopthethyroidmadness.com/2016/08/01/high-copper/

Janie Elaine HIGH COPPER QUEENSThough this Stop the Thyroid Madness blog and website pertains to thyroid patients and their issues, it’s been observed that a lot of thyroid patients have also found themselves with high copper, whether because of the MTHFR or other methyl mutations, high estrogen, the use of a copper IUD, or other causes.

Elaine and Janie are two hypothyroid individuals who have found themselves with high copper levels. Here is their story via interview, and they hope that you gain good information to help you either discern if you, too, have a high copper issue, and what to do about it.


PLEASE TELL US ABOUT YOURSELVES
Janie:  I am someone who, other than being quite hypothyroid for 20 years due to the poor treatment with Synthroid and Levoxyl, and who also has Mitral Valve Prolapse, have had very few problems in other areas. I then found natural desiccated thyroid in 2002 and my life changed ten-fold. I am now the founder of the patient-to-patient Stop the Thyroid Madness movement as evidenced by the website (www.stopthethyroidmadness.com), books (//www.laughinggrapepublishing.com), Facebook group (http://www.facebook.com/StoptheThyroidMadness/) and other areas.

Elaine:  I was not diagnosed with Hashimoto’s until age 20, but was suicidal at age 9, sick all of the time, tested for mononucleosis (mono)/EBV from then through high school due to exhaustion.  My dr’s falsely said there was nothing I could do about Hashimoto’s and to wait for it to be killed off.  I was very sick all of the time, from colds, bronchitis, ear infections, multiple surgeries for hypo symptoms, diagnosed bi-polar and with fibromyalgia.  All went away when I became optimal on Natural Desiccated Thyroid (NDT) and T3 thirty-five years later. I am now one of the managers of the FTPO system of groups on Facebook. 
WHEN DID YOU FIRST DISCOVER YOU HAVE HIGH COPPER AND HOW?
Janie: Looking back, I’m fairly certain it was manifesting itself in 2014. Though I didn’t connect the symptoms at the time to rising copper, I know in August of 2014, I suddenly developed very weird iron labs. My serum iron plummeted from 103 down to 55 in just one week of high physical activity. Huh?? I’d get it back up, then down it would fall. Turns out that high heavy metals can mess with your iron levels–others might see low ferritin with high iron.  I also started to notice movement headaches in the Fall of 2014, and I’m not a headache person, so that was new. In October of 2014, I did hair testing and though copper was midrange, I didn’t understand the significance.  In early 2015, I was seeing my hair come out in clumps, yet I had gotten my iron back up once again. Finally in March of 2015, I was noticing I had ruminating negative thoughts–not at all like me!! What the heck was this about?? So by April of 2015, I did serum testing of copper and zinc and there it was: high copper, relatively low zinc–they have a see-saw relationship!  Another important test is hair testing, also called the HTMA, since not everyone is lucky with blood testing as I was. Finally, a good indication is high calcium, which I had and is called the calcium shell, but didn’t now the connection to high copper!

Elaine: When I first began NDT and tested at 3 grains after holding my dose for 6 weeks, my Reverse T3 came back high. I then tested iron, which was high and indicated MTHFR and heavy metals. Equally, high iron from MTHFR actually puts you in a low iron state since it’s not being broken down for use! From there I actually tested MTHFR (I am Homozygous, from both parents, for MTHFR A1298C) plus Copper, Zinc and Ceruloplasmin. Copper was high. It was also suggested to look at my sex hormones, so I tested them as well and came back as highly Estrogen Dominant, which can promote high copper.
CAN YOU PLEASE SHARE YOUR LABS THAT REVEALED A COPPER PROBLEM?
Janie: These were done in April 2014.

Copper, Serum: 1.36 mcg/mL (.75 – 1.45)  HIGH
Zinc, Serum: .81 mcg/mL (.66 – 1.10)  LOW
     Ratio: 1.68 (should be .7 – 1.0) TOO HIGH            
Ceruloplasmin: 40.5 mg/dL (16 – 45)  (this is the protein that binds and carries copper around)

Bound Cu: 121.5, Unbound Cu: 14.5 (optimal unbound Cu: 5-15)
% Unbound Cu: 10.7% (optimal 5-15%)

*** Note that I did serum copper and zinc–some will say it needs to be plasma, but serum confirmed it anyway as did my symptoms. Others recommend Copper RBC and Zinc RBC, but again, serum proved it  (SEE UPDATE on COPPER/ZINC LABS at the bottom of this post)

Elaine: These were blood tests done, tested on 8-18-14

Ceruloplasmin, S 31.6 (16.0-45.0 mg/dL) LOW
Copper,S 1.58 (0.75-1.45 mg/dL) HIGH
Zinc, S 0.74 (0.66-1.10 mcg/mL) LOW

At this point I was still hypo with RT3 issues and so VERY tired, but at that time I did not feel I had symptoms of high copper.

WHAT DO YOU FEEL CAUSED YOUR HIGH COPPER?
Janie: I’m fairly certain it was because 2014 was a year of constant and unrelenting high stress, both good and bad. I was editor of the STTM II book, plus had many other things going on in my life–good things, but stressful. And turns out that chronic high stress can deplete your zinc, which in turn can cause copper to rise. 1) On top of the stress/zinc fact, I was eating a huge amount daily of stevia-sweetened chocolate daily as my way of self-comforting myself through the unrelenting stress. And chocolate is high copper! I was unknowingly feeding my internal levels of copper that were destined to climb. 2) Additionally, I found out later the next year via hair testing that I had low levels of both manganese and chromium—another inducement of rising copper. 3) Some literature states that deficient levels of B-vitamins and vitamin C can also promote rising copper levels—I had both deficiencies but didn’t know it at the time.

Elaine: For me, MTHFR (inability to detox) and high estrogen were my causes.  I actually was able to detox it all in about 8 months. But later, when my Dr put me on DHEA, I had high estrogen symptoms in 3 days, and retested copper to see that it shot up higher than ever before, not to mention estrogen was now higher than ever before, too. 
ONCE YOU FIGURED OUT YOU HAD HIGH COPPER, HOW DID YOU START DETOXING IT/GETTING IT OUT?
Janie: This is where there is all sorts of strong opinions in groups, so I had to do careful reading in books and on the net to make a decision for myself. 1) I first got on Manganese and Molybdenum (not even knowing I was low in both, as I found out later). Manganese is stated to help remove copper, especially from the liver.  Molybdenum is stated to bind to copper and greatly facilitates its excretion. 2) I also got on B-vitamins, especially b6 and zinc to start detoxing. But I had to learn the hard way that both of those b’s heightened the speed of my detoxing (and fatigue misery) and I had to take MUCH lower amounts. I may be a fast metabolizer. 3) Some will say take no zinc whatsoever, but my experience is that very low levels were fine. 4) I was also taking curcumin/turmeric and astaxanthin for inflammation–don’t remember why I thought I had inflammation. 5) It was later in my detox than I realized that my main focus needs to be to support my liver and kidneys—the detoxing glands!!  I used Milk Thistle (but had to eventually stop as it was lowering my ferritin too much) then moved to Dandelion Root, plus Swanson’s Kidney glandular. P.S. I also stopped eating chocolate completely during detox. sigh (Update: I also detoxed a second time starting June, 2016)

Elaine: The first time, I took Molybdenum, Zinc, manganese.  I supported my liver with Dandelion root and NAC.
WHAT WAS YOUR DETOXING EXPERIENCE AND HOW LONG DID IT LAST?
Janie: I started detoxing in late April 2015, and it ended on its own by October 2015. And frankly for ME, it was absolutely miserable. I was completely exhausted the entire time in an extreme way–much worse than I read others having. Turns out I had a mitochondrial problem beneath it all, and I think the copper detox overwhelmed my mito. Detoxing takes a lot of energy, and my energy metabolism was faulty already…even if I didn’t know it. Ironically, though my body stopped detoxing on it’s own as I neared six months, and though my zinc levels were fabulous now, my serum copper was still a little too high. But I redid hair testing, and things were good enough there in my mind i.e. 16 (11 – 37). That was far better than the previous mid-range of 23—and which I have no doubt got MUCH higher before I caught it all (In hindsite, I probably should have detoxed more). 

Elaine: I detoxed the first time for 8 months. I had brutal headaches that began at 6:30 PM every night, loose stools that were orange (copper) in color, and exhaustion once again like I was when hypo. I also have mito problems as revealed by the OAT test. 
DID THE HIGH COPPER or COPPER DETOX AFFECT YOUR EMOTIONS and/or BRAIN?
Janie: It sure did. I had movement headaches in late 2014 before I ever knew about my rising copper i.e. if I bent down to pick up something, there it was. Right before I started to detox the first time in April 2015, and when my copper had to be sky high, I noticed I had ruminating fearful negative thoughts. My brain must have been loaded with copper by then, as copper is a known neurotoxin. The second time around in 2016, and as I was entering the third month of detoxing, I noticed depression was creeping in, irritability, impatience. I can imagine that the latter is related to the copper moving around to be released.

Elaine: Copper dumping gave me headaches. Sometimes I felt irritable when there seemed to be no cause for it. I tend to be a happy-go-lucky type, so this irritability was a surprise to me (and my poor husband!). The headaches came nightly for me while detoxing, like clockwork at 6:30 pm. I chose not to take Ibuprofen due to more strain on my liver and harm to my gut which already has issues, so drank extra water which helped to make it bearable. The irritability came and went–it wasn’t constant. I recognized it coming as a sense of anger in the pit of my belly. I would go and read, be unsociable, warn my husband and wait for it to pass!
WERE YOU ABLE TO KEEP YOUR COPPER LEVELS DOWN AFTER YOU FINISHED DETOXING?
Janie: Unfortunately, there was evidence that I didn’t keep it down at all after 2015’s decline by the Fall, or that I should have gone much lower. But in the Spring of 2016, I was seeing more hair loss than normal again, yet my iron was great. No, I didn’t have the movement headaches or the ruminating negative thoughts like I did the year before, but the hair loss was a sign. Then at the beginning of June 2016, my body started detoxing copper again! I wasn’t trying to do so–it happened from taking phospholipids, known to help heal the mitochondria (of which I had a problem as revealed by the Organic Acids Test and symptoms–not everyone does). But it turns out that phospholipids induce detoxing! So here I was, once again detoxing copper with the exact same symptoms I had in 2015–copper-colored stools, adrenal stress, fatigue.  

The two phospholipids are NT Factor and Body Bio–one in the morning and one in the evening. Some just use NT Factor.

Elaine: No, because my Dr put me on the DHEA, which my body converted to crazy amounts of estrogen in 3 days, I had to do this all over again…  I am currently holding off as I am working on mitochondrial issues which are worsened with detoxing…although my stools are indicating that what i am taking for Mitochondrial function is causing me to detox…
WHAT ARE YOU DOING TO PREVENT COPPER FROM GOING UP AGAIN?
Janie: This is where I’m doing some educated guessing. The first time my copper went high, I’m pretty sure it was a combination of chronic high stress depleting my zinc along with excessively high copper chocolate consumption for months and months.  i.e. I greatly did to myself.  But I also can’t discount that a potential underlying mito problem may have contributed, and my low levels of certain nutrients like manganese, molybdenum, b-vitamins, vitamin c as revealed by the Organic Acids Test later.

Now I WAS on zinc, molybdenum and and molybdenum the entire time after I finished detoxing in 2015 and up until I started detoxing again in mid-2016. So it clearly didn’t stop my copper from going up again,  even if they were important supplements. But this time around, I’ve been improving my B-vitamin and Vit. C levels, plus treating my mitochondrial problem better.  I’m also determined to stop the chocolate eating/self-treatment for stress, and only have chocolate in some foods for enjoyment here or there.  I also purchased a water filter, just in case there are heavy metals in our water. So we’ll see.

Elaine:  For me, keeping a close eye on my estrogen levels, taking “DIM Plus” daily to lower the estrogen and keep it in the right pathways. We do not have copper pipes at home, and will not in our new home. I eat copper  containing foods as treats vs daily.  I also have successfully treated my MTHFR, so that I should be able to better detox naturally now.
WHAT ABOUT THE MTHFR MUTATION IN ALL THIS?
Janie: Since the MTHFR mutation can contribute to high heavy metals, there is a question if my single 1298 heterozygous mutation may have contributed, or my other methyl mutations like COMT. I’ve seen that happen to others. So today, I am treating that with methyl b-vitamins, just in case, though I can’t be on methyl B12–have to use hydroxy B12.  I needed to raise my b-vitamin levels anyway to help assist my compromised mitochondrial function! 

Elaine: I have treated my MTHFR mutation successfully with the active forms of B vitamins, Hydroxy B-12, Methyl Folate, P5P for B6, I also take B1, B2.
WHAT ARE SURPRISES YOU HAD DURING THE ENTIRE HIGH COPPER JOURNEY?
Janie: My biggest one was finding out that not only did I have high copper, I also had high lead (though not as high as the copper). Both were revealed by hair testing in 2015…and both came down after those six months of detoxing in 2015 as also revealed by another hair test.  The second surprise was discovering that copper detoxing (or high copper) can cause SIBO…Small Intestinal Bacterial Overgrowth. Have never had gut problems in my life, then found myself with SIBO that I had to treat. The third surprise was that I started to detox again in 2016 by accident!

Elaine: I  had also done an HTMA hair test in addition to serum copper that also showed high Copper, but also high Cobalt, Iron and Beryllium (my iron is almost perfect now through treating MTHFR and heavy metals).  I am finding that the first detox of copper was the fastest and the easiest of the three I have done so far. After the second time detoxing Copper, I also got SIBO and some pretty bad mitochondrial damage–the latter as evidenced by the Organic Acids Test. Janie has this, too.
YOU MENTIONED COPPER-COLOR STOOLS WHEN DETOXING. REALLY?
Janie: Absolutely! It happened when I detoxed for six months in 2015 (and went away once my body stopped) and happened exactly again when I started to detox in 2016. It’s a classic sign for me.

Elaine: Positively glowing copper penny orange stools!  Stains toilets too, so they have to be washed often!
IF YOU COULD CHANGE ANYTHING ABOUT DETOXING, WHAT WOULD IT BE THAT MIGHT HELP OTHERS?
Janie:  One, I find the biggest emphasis should be on supporting your natural detox organs like the liver, kidneys and skin. If you do a sauna to sweat out the metals, it’s the skin helping you. But I supported more my liver (Dandelion Root twice a day, for example) and kidneys (Swanson Kidney Extract twice a day). Second, I find it quite important to take key antioxidants when detoxing like Astaxanthin, Grape Seed Extract, Vit. C and E, etc. I didn’t get into that well enough the first time around and regret it, so I did much better using them the second time around. Third, it’s going to be quite important to find out if you have the MTHFR mutation and treat it. //www.stopthethyroidmadness.com/mthfr And 4th, with what I know now, I would be on CoQ10 while detoxing to support my mitochondrial. I am now because I have no choice—my mito are screaming for it, and were even before I started to detox again. 

Elaine: I also agree, support the liver, the kidneys, use antioxidants, of which I now take many.  NAC, Astaxanthin, Vit. C and Vit. E.
DID DETOXING EFFECT YOUR ADRENALS IN ANY WAY?
Janie: Definitely. Detoxing heavy metals can be a huge stress on one’s adrenals! Now understand that I didn’t have an adrenal issue before I started detoxing. So at the beginning of detoxing, I didn’t even think about it. But as it continued, it became clear that my cortisol was shooting high. I started to have sleep issues through the night. I felt shaky in the morning (adrenal excess can go with high cortisol just as it can with low). And around dinner time later in my detoxing, I had the internal buzzing feeling that can go with a cortisol issue. The second time around with detoxing high copper brought on high cortisol again–sleep issues, morning adrenaline and shakiness, evening same.  What was effective for me was to take Holy Basil in the morning, again in the late afternoon if I noticed symptoms, and before bed.  A side note: during the second detox, and after 4-5 weeks of my mitochondrial treatment with high-dose CoQ10 and B-vitamins, and my cortisol issue mostly went away.

Elaine:  I was having adrenal issues anyway, and they did get worse. I began with a see-saw saliva testing pattern of Low, High, Low, High.  A year later after first detox I was Low, High, High, High. A year later after second and third detox, I was Low, Low, Low, High…aka adrenal fatigue. I had been treating adrenals through all the detoxes, and my Mother died during 3rd detox and I also got SIBO then (just like Janie did after copper issue), so those I am sure contributed to my adrenals getting worse, but the pattern was there before. Clearly it was too much for me!
OTHER BITS OF INFORMATION YOU’D LIKE TO SHARE??
Janie:

Once I start detoxing, my body is simply going to continue it on its own no matter what. I must be a super detoxer.
If there is excess fatigue with detoxing, look at your mitochondrial function via an Organic Acid Test (OAT). I am thinking my mito were functioning less than optimal before my 2015 detox, and the detox plus the SIBO plus a yeast infection from hell….ruined my mito. I now have to take a very high dose of CoQ10, and added in NADH, along with the other supplements that the OAT told me about. I am not out of the woods. 
I got a lot of good information from these websites: http://www.drlwilson.com/articles/copper_toxicity_syndrome.htm and http://www.coppertoxic.com/  
Use your best judgment after reading several sources. Be wise within any copper groups, as you will have to sift through “strong opinion” vs “valid information” and decide what fits you.
This is the hair testing I have used twice, also called HTMA, and I will use it again to keep track of where my metals are: https://www.directlabs.com/sttm/OrderTests.aspx (3rd test down)
Testing should always be copper, zinc and ceruloplasmin at the least (ceruloplasmin is the major copper-carrying protein). If ceruloplasmin is quite low or below range, might want to explore Wilson’s disease. 

Elaine:

The Organic Acid Test was a huge help to me, The second time I detoxed copper, my zinc levels were fine, I used Food Grade Diatomaceous Earth instead of zinc successfully (along with the other things I took the first time), I took it away from medications and supplements to be sure they absorbed still.
Copper detox makes me have loose stools
Copper detox usually made me exhausted
Copper colored poop
When I detoxed with Zinc and DE, headaches every night
Detoxing by accident with Mitochondrial supports, no headaches, no exhaustion

UPDATES FROM JANIE:
NOTES:

It’s rare, but there are some who might have Wilson’s disease, which is an autosomal recessive inherited disorder. It causes accumulation of copper in major organs like your liver (failure to filter it out), brain, and more. www.wilsonsdisease.org/
About zinc and how it can be depleted: http://drlwilson.com/Articles/ZINC.htm
About ceruloplasmin: http://www.clinchem.org/content/51/8/1558.full
Since high levels of copper is usually in the unavailable form, you might see problems with yeast.  
Also going hand-in-hand with high copper is high calcium, called the “calcium shell”. With that high calcium can be lack of emotion/apathy.
High copper can also cause excess fears or anxieties. Detoxing may create some of the same.
You will see ceruloplasmin mentioned on key copper websites–the major copper-carrying protein. Some will state that the lower it is, the quicker copper will build up in your liver and brain. Janie had high ceruloplasmin and still an obvious brain buildup! Just to show that there can be exceptions to the rule.
If you want to work with a doctor, find one who is open-minded about hair testing  aka HTMA. But you may be lucky and the blood testing shows the problem anyway along with symptoms. Want to order your own HTMA?? You can! Go to the following page, scroll down and click on the DIRECT LABS icon, and the hair test is the 3rd one down: //www.stopthethyroidmadness.com/recommended-labwork
Copper IUD’s have caused many women problems with rising copper levels! That can especially be true if you have the MTHFR mutation, which prevents your body from breaking it down.
It’s stated that vegetarians have a high risk of becoming copper toxic.
Foods high in copper include chocolate (darn it), avocados (darn it again) molasses, liver, oysters, shrimp, mushrooms, sesame or sunflower seeds, cashews, etc. A more comprehensive list is here.

PLEASE WORK WITH AN INFORMED DOCTOR IF YOU CAN FIND ONE.

If you found yourself with high copper, let us know your story by commenting below!
UPDATE FROM JANIE, late NOVEMBER 2016
Here is what I got down to in Sept. 2015 when I suddenly stopped detoxing following 5 1/2 months:

COPPER: 1400 (810-1990) (I was 1571 after detoxing two months)
ZINC: 1.09 (.66 – 1.10)
RATIO: 1.0 (you want it to be .7 – 1.0)

And here is where I am in late November 2016, after 5 1/2 months of detoxing high copper once again

COPPER: 1400 (810-1990)
ZINC: 130 ug/dL (60-130)
RATIO: 1.0 (you want it to be .7 – 1.0)

You can see they are nearly identical, each after detoxing 5 1/2 months.  Zinc was a different measurement above, but at top of the range, just as last year.

And, with both detoxes:

1) High inflammation
2) High RT3, needing T3-only
3) Massive easy fatigue (I think both detoxes heavily messed with my mitochondria–the powerhouse of energy

 
ADDITIONAL READING:

This is a great read about what high copper can do to you: https://healdove.com/alternative-medicine/Hypercupremia-High-Copper  And also note in the latter article that high copper can mess with your Glutamate/GABA balance, ie resulting in high glutamate levels in your brain (causing inflammation), plus in some,impaired speech, aggressive behavior, intense irritability, anxiety, inflammation of the gastrointestinal tract (GIT), and eventually neuronal destruction.

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