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Janie: The High Copper Detox Queen

Even though this Stop the Thyroid Madness blog, website and the books pertain to thyroid patients and their issues, it’s been observed that many thyroid patients have also found themselves with high copper, whether from low zinc due to illness, the MTHFR or other methyl mutations, chronic high stress, mold exposure (which can tank zinc), high estrogen, the use of a copper IUD, or other causes.

I am one who found myself with high copper. 

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My story

Looking back, I’m fairly certain my high copper was manifesting itself in Fall of 2014 by suddenly developing 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, It should not have even been mid-range, but 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??

How my labs revealed a copper problem

First, the clue that a problem was brewing was shown in October 2014, but I didn’t understand the significance. i.e. it was the metals hair testing, called an HTMA, showing Copper was going up at 23 (11-37). This is the one I ordered and did: https://www.directlabs.com/sttm/OrderTests.aspx

By April of 2015, my symptoms were so horrible in my BRAIN that I did serum testing of copper and zinc. And there it was: high copper, relatively low serum zinc–they have a see-saw relationship! Another important test is hair testing, also  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 know the connection to high copper!

Additionally, a Calcium result was SUPER high 1840 (300-1200) which correlates to rising copper. It’s called a Calcium Shell, meaning a high tissue level that that forms to protect against stress. That should have screamed at me, but I wasn’t informed.

Here are my lab results in April 2015.

Copper, Serum: 1.36 mcg/mL (.75 – 1.45) HIGH
Zinc, Serum: .81 mcg/mL (.66 – 1.10) LOW (And if only I had done the RBC zinc!!)
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, and I would now do the RBC zinc, not the serum.

What caused my high copper

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 chronic and stressful. And turns out that chronic high stress can deplete your zinc, which in turn can cause copper to rise.

Additionally, I was recovering from mold inhalation, which left me quite sick the year before. Not only is mold stated to lower zinc, but my immune system was in high gear battling it, and that can also tank nutrients like zinc. (You will see later in this article that only in 2017 did I discover my RBC zinc was BELOW range)

On top of the stress/mold zinc fact, I was eating a huge amount daily of stevia-sweetened dark 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 in the face of my low zinc. 

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.  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.

How I started the detox

This is where there is all sorts of strong opinions in groups, so I had to do careful reading make a decision for myself.

  1. The most important step I took is to get off of all high copper foods. That especially included all the stevia dark chocolate I had been consuming to self-treat stress. Bad mistake when zinc was so low. (I initially left this step off when I created this page, and shouldn’t have. It’s the most most important step!)
  2. I 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.
  3. I also got on B-vitamins, especially b6 and zinc to start detoxing. But I had to learn the hard way that the 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.
  4. Some will say take no zinc whatsoever, but my experience is that low levels were fine.
  5. I was also taking curcumin and astaxanthin for inflammation
  6. To support my liver and kidneys (the detoxing glands), I used Milk Thistle (but use iron with it–it can lower iron levels) plus Dandelion Root, plus Swanson’s Kidney glandular. P.S.  I also detoxed a second time starting June, 2016)

My detoxing experience

I started detoxing in late April 2015, and it ended on its own by October 2015. And frankly for ME (though it may not be this bad for you), it was absolutely miserable with fatigue and weakness. I was completely exhausted the entire time in an extreme way–much worse than I read in others.

BUT, I later figured out that for whatever reason, I wasn’t breaking down carbs well to give me energy to endure the detox. And the latter was due to the fact that my pancreas wasn’t releasing enough of the enzyme called amylase which breaks down starches and carbs for energy! My situation was probably rare.  

But one thing did help back then before I knew about my low-amylase caused low energy: CoQ10! I got on 1500 mg liquid Ubiquinol daily. That did help! Because all the stress I was going through at the time also caused super high Succinate, Fumarate, Malate and a-ketoglutarate in my urine as revealed by an Organic Acids Test (OAT)–implying I had an energy metabolism disorder.

Ironically, though my body stopped detoxing on its own as I neared six months, and though my serum 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 found out my  probably should have detoxed more. That came in 2016) 

Did the high copper affect my emotions and brain?

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.

Did the high copper and especially the detox effect my thyroid?

Yup. It sent my reverse T3 (RT3) up, which is probably due to the inflammation levels it pushed up. I had to be on mostly T3 instead of the natural desiccated thyroid (NDT) I had been on.

Was I able to keep my copper levels down after detoxing?

Unfortunately, no. There was evidence that it went back up. Because 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. It all lasted nearly 6 months again. The two phospholipids were NT Factor and Body Bio–one in the morning and one in the evening. Some just use NT Factor.

Then it happened again in 2017, but luckily only a month. And you know what started the detox this time? Trying out 10 mg of lithium instead of 5. I was using low dose lithium to help get B12 to my cells better.

And then, again in April 2018–very strongly as revealed by the stools and fatigue. But this time, I was prepared, and taking many adrenal-calming supplements helped a lot in that area. I also went back up on my ubiquinol.

Why the continual copper detoxing? One clue is the excessively high amount I had–some literature says it can take a few years to get it all out. That seems true to my experience.

What did 2017 reveal about my zinc?

All through 2015 and 2016, I was always doing serum zinc labs. In April of 2015, when I first understood I had a serious Copper problem, it was LOW:  .81 (.7-1.10). I got it towards the top of the range by the end of 2015, and did so in 2016 and worked to maintain that. 

But in the Fall 2017, I did an RBC zinc instead of serum: BELOW RANGE. RBC stands for red blood cells. Seeing BELOW range threw me against the wall in shock: I may have had below range RBC zinc ALL this time. No wonder I had a copper problem!! I was already on 30 mg zinc, and I went to 80mg zinc. THAT is one way we can all control our levels of zinc–keep it up!

What about the MTHFR mutation in all this?

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 just in case, I stay on folate plus other B vitamins. 

What are surprises I had during the entire high copper journey?

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 the hair testing I did in 2014…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. (Turns out SIBO can happen due to a poor release of bile from the gallbladder!) The third surprise was that I started to detox again in 2016 by accident!

And the final surprise?? Finding out why this may have all happened in the first place. My RBC zinc was BELOW range in 2017, that means it had to have been horridly low by 2014—-all due to my immune system in high gear in 2013 due to mold poisoning. Immune systems need a lot of nutrients to be effective.

Copper-color stools when detoxing–really??

Absolutely! It happened when I detoxed for six months in 2015 (and went away once my body stopped), happened exactly again when I started to detox in 2016, and happened in 2017 and 2018 for shorter, but still challenging, detoxes.

If I could change/improve anything about my high copper experience, as well as detoxing, what would that be?

  1. 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 tended to support my liver (Milk Thistle for one) and kidneys (Swanson Kidney Extract twice a day) during the second round of detox. Why? Because I tend to naturally detox with the elimination organs!
  2. 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.
  3. It’s going to be quite important to find out if you have the MTHFR mutation causing high heavy metals and treat it. I don’t think this was my cause, but it would be for you, especially if you have the 677 MTHFR mutation. 
  4. With what I know now, I would be on high amounts of CoQ10 (ubiquinol, not ubiquinone) while detoxing to support my mitochondria. I did that for the second detox and felt a little better. But you may not have the energy metabolism issues I had as discovered via the Organic Acids Test. I also discovered via a stool test that I have an intermediate level of carbs in my stool–a carbohydrate metabolism disorder. I don’t uptake carbs well for energy! No wonder I was so exhausted with detoxing!
  5. I should have been on glutathione…a master antioxidant in your body. It was used up by all this detoxing and exposure to toxins, and I didn’t even find THAT out until January of 2019. UGH. I used infusions to get it up. No wonder I noticed myself aging quicker!

Did detoxing effect my adrenals in any way?

Boy did it. Detoxing heavy metals can be a huge stress on one’s adrenals! Now understand that I did NOT 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 six month detox I went through 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. I also learned to take supportive adrenal supplements like Taurine, GABA, holy basil, ashwagandha, rhodiola….etc. 

Want to know if your adrenals are being affected? You can order your own saliva cortisol test here. 

Other bits of info

  1. Once I start detoxing, my body is simply going to continue it on its own no matter what. I must be a super detoxer.
  2. 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 took a very high dose of CoQ10, and added in NADH, along with the other supplements that the OAT told me about. 
  3. I got a lot of good information from these websites: http://www.drlwilson.com/articles/copper_toxicity_syndrome.htm and http://www.coppertoxic.com/
  4. 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.
  5. 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)
  6. Testing via blood should always be copper, RBC 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.
  7. 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/  That was not my cause, but you should read about it, just in case. 
  8. About zinc and how it can be depleted: http://drlwilson.com/Articles/ZINC.htm
  9. TEST YOUR RBC zinc!!
  10. About ceruloplasmin: http://www.clinchem.org/content/51/8/1558.full
  11. Since high levels of copper is usually in the unavailable unbound form, you might see problems with yeast/candida.
  12. 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.
  13. High copper can also cause excess fears or anxieties. Detoxing may create some of the same. That happened to me. Could also be related to the adrenal stress it all causes.
  14. 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, it seems.
  15. 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
  16. Copper IUD’s have caused many women problems with rising copper levels! That can especially be true if you have the MTHFR mutation or even high stress. 
  17. It’s stated that vegetarians have a high risk of becoming copper toxic.
  18. 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

Why test RBC levels of certain minerals? Because it’s measuring the intracellular levels in your body, which is even more important than serum levels. What can mess up your cellular levels? Toxic levels of other metals, for one. Those minerals which can have the RBC tested include Zinc, Copper, Potassium, Vanadium, Chromium, Manganese, Potassium, Selenium and Magnesium. The other metals need more then RBC, such as hair testing, i.e. they can be good with RBC, but high in hair. More good info here.

UPDATE FROM JANIE, late NOVEMBER 2018

Looking back, I have figured out that the stress of copper detoxing over the past few years may have contributed to gallbladder problems. The clues? The first one was having SIBO after my first detox in 2015–it’s strongly related to your gallbladder and bile levels. The second? I don’t break down fats well at all anymore. And there are other TMI clues that you can see by researching “symptoms of a sluggish gallbladder”. I have some; not all. But it’s very obvious. So I’m now taking Cholacol by Standard Process to help break down fats and which provides more bile. There are also things to be done to support a sluggish gallbladder, which you can also do an internet search for.

ADDITIONAL READING:

  1. 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, i.e. 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.
  2. Great website on the copper issue: https://coppertoxic.com/

 

68 replies

10 Rockin’ Thyroid Patient New Year Resolutions just for you!

10 RESOLUTIONSHIP HIP!! As we head into a New Year, here are 10 resolutions to potentially help you feel better and stay better as a thyroid patient…and informed patients everywhere will back you all the way, thyroid friends!!

check mark in square1. I WILL GIVE UP THE PATIENT PASSIVITY AND BECOME EDUCATED AND PROACTIVE!

It’s on purpose that this is the first resolution! Why? Informed thyroid patients achieve better results plus become more confident and proactive in their doctor’s office. Both the latter are IMPORTANT to getting well and staying well, say informed patients.  Let the wisdom of thyroid patients in the Stop the Thyroid Madness books and the patient-to-patient website information be your key towards finding your better thyroid treatment spot. (The STTM II book is even written by medical practitioners!)

check mark in square2. I WILL EXERCISE MY RIGHT TO FIRE MY DOCTOR AND FIND A MUCH BETTER ONE IF I CAN.

If attempting to educate our doctor doesn’t work, there’s the option to find a better one. In the United States, thyroid patients do have choice, and they can exercise it. They work to find a better informed or more open-minded doctor. In the UK, patients choose a clinic…and believe it or not, they do have the right to choose a specialist, but they need to fight for their rights to find a good replacement doctor. Says an informed UK patient: if you hear of good Endo, ask for a referral and ensure you contact them to say you only want to see that Endocrinologist. No one else.  In Canada like elsewhere, patients can do the work to find a better doctor, but may have to call to make sure someone is taking new patients. Every province has different rules.

It’s not always easy depending on where you live, but it’s possible!

check mark in square3. I WILL RETHINK THE SYNTHROID/LEVOTHYROXINE BALONEY.

A healthy thyroid makes five hormones, not just one. T4 is a storage hormone meant to convert to the active T3 hormone. It’s T3 which does the trick in removing hypothyroid symptoms. But a healthy thyroid also gives you direct T3 and doesn’t force you to only get it from conversion. There are plenty of reasons why you won’t get enough T3 from conversion, sooner or later, even if at first, some do feel better. That’s why patients all over the world are switching to natural desiccated thyroid (NDT), or adding synthetic T3 to their synthetic T4 and raising the T3 or NDT to find their optimal dose.

check mark in square4. I WILL KEEP TRACK OF MY IRON LEVELS

Informed patients, whether female or male, found out the hard way in groups associated with STTM that their iron levels are important. If iron gets too low, we’ve noticed we might have hyper-like symptoms with NDT or T3 on top of feeling poorly from low iron. Or we just might feel pretty darn awful from inadequate levels of iron. And we know that there are important iron labs we pay attention to, as well as learning where our iron should fall.

check mark in square5. I WILL PAY ATTENTION TO MY GUT HEALTH AS WELL AS WHAT I CONSUME.

The “gut” refers to the journey and bodily activity from what goes into your mouth all the way down to where what’s left comes out. And for those with Hashimoto’s, the majority do better by avoiding gluten. It helps decrease antibodies for many, and lowers the problem of inflammation caused by the gluten. Removing gluten has also improved nutrient levels. Some need additional help with LDN, or selenium, or iodine–it’s individual as to what will work best for any one patient.

Our intestinal bacteria is also important and believe it or not, can have a major role in a strong immune system and even our brain health, besides good thyroid function. Informed thyroid patients nourish their microbiome with fermented food like sauerkraut or kombucha, or consuming yogurt, or taking a broad-spectrum probiotic supplement–all for the good bacteria. Prebiotics are dietary fibers which will help feed the good bacteria, and include foods like asparagus, onions, garlic, dandelion greens, raw chicory root, and even bananas or beans and more. You can do a search for prebiotic supplements, too.

check mark in square6. I WILL PROTECT MY ADRENAL HEALTH.

Our adrenals are the knights that protect us and keep us going. So patients have learned to support and protect them. One important way is to avoid or lower stress the best way we can: resting, meditation, pleasure reading, music, artistic pursuits, laughing, yoga…you name it and it’s individual. When under stress, thyroid patients often use adrenal-supportive herbs, such as Ashwagandha, Rhodiola or more. If there is suspicion of a problem with our cortisol levels, informed patient do saliva testing, not blood, since they found it fit their symptoms better, besides revealed the cellular, useable levels of cortisol.

check mark in square7. I WON’T BE FOOLED BY “NORMAL” RANGES ON MY LAB WORK.

This is a huge area that thyroid patients learned about in the early patient groups and into the present. Namely, we saw that many of us fell in the so-called “normal range” result, yet clear symptoms of the particular problem. The TSH lab rest was one, but there are many other labs and their so-called normal ranges that we won’t be fooled by anymore.

check mark in square8. I WILL LEARN FROM THE MISTAKES OF OTHERS BEFORE ME!

Yes, along the way, thyroid patients and/or their doctors have made a lot of mistakes, and we can learn from them! This page outlines many of those mistakes and what was done about them.

check mark in square9. I WILL PAY ATTENTION TO MY DUCKS–quack quack.

Yes, there are first priority issues to find through testing and working with informed doctors that we need to take care of, which ranges from better thyroid medications to treating cortisol or iron issues correctly to keeping our nutrients at healthy levels. But some have to explore other issues with their doctor to find their sweet spot, ranging from h-pylori to lyme to reactivated EBV to high heavy metals and more. It’s individual and it’s all about our ducks in a row.

check mark in square10. I WILL HAVE HOPE!

There is very good reason to have hope: there are thyroid patients all over the world who have gotten better. Janie Bowthorpe, the creator of the informational Stop the Thyroid Madness website and books, went from having to apply for Social Security Disability to regaining her life again. Hang in there! Learn from worldwide patient experiences and wisdom on STTM and find a good doctor to help!

All the above are just summaries and if more detail is needed, click on the links. For information not linked, there is plenty on the internet. 🙂

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

– Have active Graves disease and you aren’t hypothyroid yet? Go here. 

– Check out all the STTM articles on Thyroid cancer here.

– Come on over and “Like” the STTM FACEBOOK PAGE for daily inspiration and information. 

– Here are patient groups for support and information: //www.stopthethyroidmadness.com/talk-to-others

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Why you, as a hypothyroid patient, need to be aware of the Epstein Barr Virus

STTM Epstein Barr Virus Garage Sale

Though this blog post was originally written in 2010, it has been updated to the present day and time, making it current.  Enjoy!

This past Saturday, while browsing at the next-to-last garage sale (one of my favorite Saturday morning events), my ears perked up like a bunny when I heard a gal chatting with the owner of the house.

I heard things like “sick for 5 years…fibromyalgia…a lot of pain all over my body…had to quit my job and live with my parents…in bed for two years…they had to bath me...” and more miserable images of something she was clearly glad to be over.

So, while my husband sat in the car with the patience of a saint, I lingered. When she finished chatting and was heading to her car, I walked towards her and said gingerly “I overheard your conversation. Can I ask you about the fibromyalgia and your experience??” I couldn’t help myself.

As a Thyroid Patient Activist who has stood up to the inane allopathic failure in the diagnosis and treatment of hypothyroidism, I knew that the majority of cases of “fibromyalgia” were due to undiagnosed or poorly treatment hypothyroidism, as well as the accompanying hell of adrenal fatigue, thanks to the garbage can TSH lab test or the inadequate treatment of T4-only treatment like Synthroid.  Yet, here was a young woman, Mel, who was now the picture of health. What was her story??

Mel’s story was a tale of sudden onset followed by five years of misery, all over body pain,  immense fatigue, utter helplessness, debilitation, and neck lymph nodes SO swollen that they looked like two huge goiters–right and left. It was also a scenario of no firm diagnoses, yet no hesitation by doctors to make stabs– from fibromyalgia to an unknown chronic fatigue disorder.

But I knew right away what she probably had: acute Epstein Barr Virus (EBV) reactivation.

I knew because I had the exact same malady which once took away more than a year of my life (as compared to Mel’s horrific five years).  And like her, with the use of meditation (and in my case, intense imagery and homeopathics), I got well as if it never happened.

And we also shared a reason why the EBV virus became activated in our bodies in the first place: STRESS.  For Mel, it appeared to have nothing to do with anything thyroid-related, but an extremely stressful helping-vocation that was eating her alive. For me, it was the stress of having to be where I didn’t want to be, feeling overtly powerless…and on top of being on the lousy Synthroid.

And for thyroid patients all over the world, including you, the risk of reactivation of the Epstein Barr Virus is a constant threat.

Reactivated EBV can result from one or more of the following biological stresses:

  • being undiagnosed thanks to the inadequate TSH lab test
  • being on a T4 medication like Synthroid, Levoxyl, Levothyroxine, Eltroxin, Oroxine, etc
  • falling into low cortisol from adrenal fatigue
  • having chronic side issues pulling your body down such as gluten intolerance or celiac, low iron, poor digestion, or making mistakes in your treatment

Even worse, add life’s stresses as icing on the cake, and you’re a sitting duck for the risk of reactivated EBV.

What is EBV?

Epstein Barr Virus,  also called human herpesvirus 4 ( HHV-4) is an opportunistic virus that actually lies dormant in at least 95% of all adults over their 30’s. It’s what causes mononucleosis, aka “mono”, as a teenager,  but you don’t have to have had mono to carry the dormant virus. Wikipedia states that it also probably has a primary role in many autoimmune diseases, including ” dermatomyositis, systemic lupus erythematosus, rheumatoid arthritis, Sjogren’s syndrome, and multiple sclerosis.” i.e. this is one nasty virus!

Why do so many thyroid patients find themselves with reactivated EBV?

Millions of thyroid patients live their lives compromised due to being on T4-only meds like Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, and other T4 med brands.  Additionally, patients find themselves with poorly functioning adrenals, poor digestion and other conditions related to a poor treatment–all adding to a lowered immune system, which allows the opportunistic EBV virus to take ahold, especially in the face of extreme or chronic life stress.

What are symptoms of a reactivated EBV?

It can vary from patient-to-patient, but can include easy and excess fatigue, achiness, joint pain, all over body pain, swollen lymph nodes, slight fever, ringing in the ears, and a general I-don’t-feel-well–the latter all the more so after activity. When my EBV antibodies were acute, I would be in bed for 2-3 days after pulling weeds for just twenty minutes while seated.  I couldn’t grocery shop; I couldn’t do housework. Nothing. Nada. I also had constant ringing in the ears and achiness.

How do I find out if I have reactivated EBV??

Ask your doctor to send you to a lab to be tested for it, and be sure you clarify that you are not asking for tests that show you were exposed it (most of us have). Instead you are asking for the testing which shows it has reactivated.  Or you can order it yourself via the labs I have listed here.

How do I treat it??

It’s not easy. I personally benefitted from taking a prescribed anti-virus medication. Though that lessened my symptoms by 50%, it wasn’t enough. I then moved to homeopathic medications and some dedicated mental imagery to finally get rid of it, as well as lots of rest and the immune enhancing support of vitamins, minerals, supplements plus healthy strategies i.e. whatever it takes to nourish your immune system. Nourishing supplements include high dose Vit. C (2000 mg minimum),  Vit E as mixed tocopherals,  selenium (200 – 400 mcg), mushroom extracts, CoQ10, high dose B-vitamins, minerals plus plenty of healthy and raw foods.  There are also great natural anti-virals I would recommend exploring. And ultimately as a thyroid patient, being on a MUCH better hypothyroid treatment with natural desiccated thyroid is the key, besides treating one’s adrenal issues, gluten or digestive issues, low iron, and all other related conditions.

Bottom line, once you are adequately treating your thyroid problem (see the current Options for Thyroid Treatment), addressing potential adrenal fatigue, low ferritin, gluten issues, low B12, for example, and using good stress management in the face of pressures within your life, your risk of having a reactivation of the dormant EBV virus is very low.

I’ve read that most all cases of hypothyroidism are due to EBV?

Not according to the experiences and intelligence of thyroid patients worldwide. Yes, there is some evidence that having reactivated herpes viruses like EBV could contribute to a hypothyroid state. But it’s rare, and is only one of many causes of hypothyroidism, not “the” cause. Far more common are genetic causes (numerous genes have been identified), as well as the well-researched organ-targeted autoimmune cause of Hashimoto’s. See this page. There are also studies that consistently show that reactivated EBV does not trigger Hashimoto’s or Grave’s–the latter also falsely stated.

Want more detailed information on EBV? Order the STTM ebook and become informed!

Namaste Janie

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Chronic Fatigue Syndrome could be UNTREATED or UNDERTREATED hypothyroid!

Though this post was first created in 2006, it’s been updated to the current day and time! Enjoy!

On Thursday night, Nov. 2nd, 2006, I was concerned.

NBC News had a short segment by Robert Bazell, their Chief Science and Health Correspondence. And Mr. Bazell and NBC news announced that there’s a “mystery illness that afflicts more than one million people in the United States, especially women”. And they confirmed that the government (Centers for the Disease Control aka CDC) is telling doctors: it’s real. And it’s called Chronic Fatigue Syndrome…or Myalgic encephalomyelitis, abbreviated as ME, in Europe.

I remember when the term CFS was coined in 1988, even without a specific cause or marker. I remember when they surmised it was due to Epstein Barr Virus. I listened when Mayo Clinic stated that CFS was a “complex disorder”. I have listened when Georgetown University Medical Center stated that “chronic fatigue syndrome (CFS) may be rooted in distinct neurological abnormalities that can be medically tested” and may be a “legitimate, neurological diseases and that at least part of the pathology involves the central nervous system.” I also listened when CDC stated that CFS was “unexplained fatigue of greater than or equal to six month’s duration.”

For years, I have listened to the symptoms of CFS/ME with openness and great sympathy. I listened when I read that small outbreaks of similar fatigue disorders have been described in the medical literature since the 1930s

And I personally  KNOW that unrelenting and debilitating fatigue is real. I know that incapacitating fatigue is real. I know symptoms can be variable, individual, and fluctuate in severity, and that friends and family may not really get how sick they are. I have also lived with chronic, debilitating fatigue, as have millions of others whether they were classified with CFS/ME or not.

BUT….to say that it’s a mysterious illness highly concerns me… for thyroid patients. We’ve had too many doctors proclaim CFS/ME when we presented our fatigue, yet the reality has been poorly treated hypothyroidism or Hashi’s, not a mystery.

And here are interesting facts for hypothyroid or Hashimoto’s patient who get this CFS/ME diagnosis.

1) Chronic Fatigue Syndrome as the label for a mysterious disorder seemed to make it’s appearance within the decade after the lousy but highly acclaimed TSH lab test was created in the mid-1970’s, and during a time when most all patients had been switched from the successful desiccated thyroid to thyroxine-only treatment..the latter which patients now know have been huge failures in the treatment of hypothyroid.

2) Most of the symptoms listed as belonging with CFS are the VERY same symptoms reported by patients who were on inadequate T4-only medications and who were dosed by the TSH. Also, those are the same symptoms that other patients had when they were told they had NO thyroid problem (due to inadequate testing and evaluation of those tests). Additionally, all the symptoms were eradicated when the patient was optimally treated on Armour.

3) Many of the symptoms listed as being those of CFS are the exact same symptoms related to having low functioning adrenals—a VERY common condition that accompanies hypothyroid is a large majority of hypothyroid patients, and which doctors ROUTINELY know NOTHING about. For example. the following symptoms are listed as CFS symptoms, but are ALSO symptoms that hypothyroid patients with low cortisol often have: allergies and sensitivities to noise/sound, fainting, fever, dizziness, balance problems, night sweats, sensitivity to light, anxiety, panic attacks, personality changes, mood swings, unrefreshed sleep…and others.

I am BOTHERED BY THE SIMILARITIES ABOVE!!

I am bothered by the fact many hypothyroid patients who come onto the many thyroid-related discussion groups state they had the diagnosis of Chronic Fatigue Syndrome when they once were on T4-only medications and were dosed by the lousy TSH.

I am bothered when CFS is classified as a “real illness” when these very same patients on these sites lose ALL those symptoms when they dose high enough with desiccated thyroid, ignore the TSH and instead, dose by the free T4 and free T3, and/or treat their low cortisol if it’s confirmed to exist.

I am bothered by the fact that many CFS sufferers are told they have no thyroid problem, when in fact, the hypothyroid-free diagnosis is usually based on very lousy labs called the TSH and T4…and often with no thyroid antibodies labs, which doctors routinely state is “unnecessary”. And if the doctor did do a free T3, he proclaimed the patient “normal” just because the number was “in range”. We, as thyroid patients, have learned that “in range” means squat.

I am bothered by the fact that several listed CFS symptoms are also those of low Ferritin, which leads to anemia, and which is a common condition with hypothyroid patients.

Now in all due respect to patients who have the diagnosis of CFS/ME, or those who suffer from debilitating fatigue–I have been there. I know there are REAL diseases, real conditions, which produce REAL fatigue that may or may not be related to having a diseased thyroid. I once had acute Epstein Barr Virus for a full year, and understand the deep misery and debilitation of fatigue. And I understand that there are other causes for chronic fatigue which include, but are not limited to, mito problems, viruses, enteroviruses, retroviruses, Herpes Viruses, Lyme, Mold and Candida albicans. I can also ascertain that some fatigue has unknown causes.

But I am deeply concerned that the “millions” that CDC is now stating as suffering from a “real disease” might in fact contain a large body who are suffering from untreated or poorly treat hypothyroidism or Hashi’s..

I want to make it clear that I am not saying that “everyone” who is classified as having CFS/ME has undiagnosed or undertreated hypothyroid. The world is not that black and white. But I do suspect, based on the information given above, that many in that “millions” possibly DO have undiagnosed or poorly treated hypothyroid, and/or adrenal insufficiency…and have not done the correct tests or the right treatment to confirm it, and to help RELIEVE them of their misery. The evidence is simply too compelling.

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