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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.

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!)
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.
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.
Some will say take no zinc whatsoever, but my experience is that low levels were fine.
I was also taking curcumin and astaxanthin for inflammation
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?

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!
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.
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.
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!
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

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 took a very high dose of CoQ10, and added in NADH, along with the other supplements that the OAT told me about.
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 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.
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.
About zinc and how it can be depleted: http://drlwilson.com/Articles/ZINC.htm
TEST YOUR RBC zinc!!
About ceruloplasmin: http://www.clinchem.org/content/51/8/1558.full
Since high levels of copper is usually in the unavailable unbound form, you might see problems with yeast/candida.
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. That happened to me. Could also be related to the adrenal stress it all causes.
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.
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 or even high stress.
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

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:

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.
Great website on the copper issue: https://coppertoxic.com/

August 1st 2016 83 replies

There’s a dynamo Thyroid Patient Advocate you should know about!

I’ve been doing this a long time.

And early on in my activism, I became acquainted with someone else who was fighting for better hypothyroid diagnosis and treatment. And she was a bulldog! She chose NOT to “walk the fence”… instead speaking the bold truth about the scandal of the current popular thyroid diagnosis, as well as treatment with thyroxine for all too many. She has numerous times over the years written the governing bodies in the United Kingdom as to the problem, including with her communication “hundreds of references” to available research and studies to back up the issue.

Her name is Sheila Turner, and she’s the founder of Thyroid Patient Advocacy in the UK (TPA-UK).

And Sheila is a HERO!

Others who work with TPA-UK

What I have loved about Sheila’s website and work are all those who are associated with it. They are:

– Barry Durrant-Peatfield, (UK) MB BS LRCP MRCS who serves as Patron and medical advisor
– Malcolm Maclean MD (UAE)”‹, a Scot practitioner who has rejected the idea that being “normal” in labwork means a patient couldn’t possibly have a thyroid problem. Dr. Maclean also wrote a brilliant STTM Guest Blog post about the effects of high doses of iodine
– Kent Holtorf, MD, the medical director of the Holtorf Medical Group and non-profit National Academy of Hypothyroidism.
– Gina Honeyman, DC, owner of the Center for Metabolic Health, LLC and co-author of a fabulously detailed book titled “Your Guide to Metabolic Health.”
– Jacob Teitelbaum, MD, a board certified internist and Medical Director of the national Fibromyalgia and Fatigue Centers and Chronicity.

Sheila’s latest concern and confrontation: Possible removal of Liothyronine (T3) from the NHS Prescription list

Just one more example of Sheila’s persistent and unflagging fight for better treatment, she has stood up in immediate defiance about the possible removal of T3 medication from the publicly-funded National Health Service (NHS) Prescription List–a potential removal as recommended by the NHS-funded program called PrescQIPP. (Only the second middle link on their website is working for me to view the Drop list.)

PrescQIPP is recommending the following:

They do NOT recommend the prescribing of liothyronine or T3-containing products for the treatment of primary hypothyroidism
They do recommend prescribing of thyroid hormones in line with Royal College of Physicians guidance (which means thyroxine, T4-only, monotherapy).

The rationale of the above ridiculous comments? Are you ready??

– T3 has a short half-life

– Steady-state levels cannot be maintained

– No robust evidence i.e. has not been shown to be more beneficial that levothyroxine with respect to cognitive function, social functioning and well-being

– Inconsistent with normal physiology

– Insufficient clinical evidence of effectiveness and cost effectiveness to support the use of liothyronine (either alone or in combination) for the treatment of hypothyroidism.

To the contrary, the evidence of consistently-reported therapeutic efficacy of T3-containing medications by a huge and growing body of thyroid patients worldwide is clearly important and worth consideration if the medical profession has even one intelligent and open-minded cell in their brains.

EVEN WORSE, their recommendations show how to move patients off their T3 and onto T4-only.

And in Sheila Turner’s latest newsletter, she states with her typical and dynamic activism:

The information about liothyronine by PrescQIPP is both mis-leading, and some of it is downright incorrect. I am in the process of writing a response to PrescQIPP asking them to remove the hormone liothyronine from the ‘Drop’ list with immediate effect and I will give all the reasons they need to do this. If such organisations as the BTA, NICE, NHS UKMi (Q56.6) and PrescQIPP learnt how the different thyroid hormones work, there would be no controversy and if L-T4 left patients with continuing symptoms, the active thyroid hormone T3 would be given automatically and without complaint. I intend to ensure they know how thyroid hormones work.

Bottom line, Sheila Turner is a strong friend of thyroid patients who is persistent in her quest to drive in the TRUTH about what appears to be a backwards and dark ages medical system in the United Kingdom about how a thyroid works, about diagnosis, and about successful treatment protocols. And what Sheila might achieve in the UK will only help the rest of us!

You are a hero, Sheila!

– CHECK OUT THE LATEST VIDEO, which includes patients in the UK, and which underscores the FALLACY of T4-only, thyroxine treatment: https://www.youtube.com/watch?v=2n0NfAUyOKo

– Have you Liked the Stop the Thyroid Madness Facebook page? It’s full of daily inspiration and information based on solid patient experiences and wisdom!

– TPA-UK forum: http://www.tpauk.com/forum/

The Scandal: Thyroid Patients are Speaking Out, Wall Street Journal, and a new video!

The push continues, fellow thyroid patients. And it’s getting louder and more widespread.

This week, Wall Street Journal columnist Melinda Beck, who writes a weekly health column, hit an important gong with her wonderful attention-getting article titled “Doctors Hear Patients’ Calls for New Approaches to Hypothyroidism.”

“Doctors and patients have been at each other’s throats for decades over how to treat a little gland in the neck–and patients may be gaining ground.” ~Melinda Beck

Beck underscored the sad reality that doctors have been relying “on a single form of treatment for hypothyroidism”, aka T4-only like Levothyroxine or Synthroid. And it’s been travesty.

Why T4-only as a sole treatment is a scandal

As I explained in detail in the revised Stop the Thyroid Madness (STTM) book, a healthy thyroid produces five hormones: T4, T3, T2, T1 and calcitonin, with T4 being the storage hormone, and T3 being the powerhouse of all the thyroid hormones. In that healthy thyroid, T4 will convert to T3, but the gland also produces “direct” T3. That is an important distinction.

Yet this “single form of treatment” with simply a storage hormone, which was thrust upon thyroid patients by 1960 (see Chapter 1 in the revised STTM book for excellent historical details), has forced us all to live for conversion alone…and hundreds of millions of us over the past five decades have a paid a hefty price. There are simply too many reasons why the conversion of T4 to T3 can be impaired, ranging from genetic factors, to diet, to stress, to illness, to age.

That is exactly what compelled me, in 2002, to start what is now the largest active thyroid group still on Yahoo, and later, the largest “system of thyroid groups” on Facebook, called the FTPO (For Thyroid Patients Only) groups–the only system of patient groups endorsed by Stop the Thyroid Madness.

How patients are dismissed

In addition to quoting a few doctors, Beck interviewed thyroid patient/advocate Mary Shomon, who stated “It’s so much easier to tell a woman to get up off the couch or hand her a prescription for antidepressants.” Also interviewed was thyroid patient/advocate Dana Trentini, who feels her second pregnancy ended in miscarriage due to only being dosed by the TSH, which in her case was left high–another hefty problem in the treatment of thyroid patients.

Major kudos to Antonio Bianco, president of the American Thyroid Association

When the American Thyroid Association (ATA) has been the height of disappointment for informed thyroid patients with it’s strong emphasis on “synthetic thyroxine” as well as its poor details about NDT, it was extremely refreshing to see him quoted as stating: “I credit this to patients pushing doctors and saying, ‘You don’t know what you’re talking about. I don’t feel fine’.” followed by Beck’s words that Bianco ‘has refocused the research to search for answers for such patients’. You give us a light of hope, Dr. Bianco.

Seven areas that patients beseech their practitioners to be wiser about…

1. Levothyroxine, Synthroid and all other T4-only medications

They have failed far too many of us. It’s not about exercising more, eating less, seeing a therapist or putting us on a myriad of other medications to treat conditions which are actually the results of that failure. Learn from us.

2. Natural Desiccated Thyroid (NDT)

What has been vividly changing lives is Natural Desiccated Thyroid (NDT), not T4-only medications. NDT has been around since the 1890’s–it worked then and it works now. Learn from us.

And to the contrary, NDT’s T4 to T3 ratio of 80/20 (as compared to the human ratio of 93/7) has not been a problem for the vast majority. Instead, problems are usually “revealed” on NDT due to a cortisol issue and/or low iron–both common problems that arise with patients who have been put on T4-only, or who have been left undiagnosed.

3. The TSH lab test

The TSH lab test is and has been as much a failure for thyroid patients as has T4-only. To be held hostage to a “pituitary hormone” has been a complete **nightmare** for thyroid patients. Even one of your own esteemed colleagues, Jeffrey Dach MD, as well as many others, know the travesty of the TSH as explained in chapter 4 of the practitioner-written book Stop the Thyroid Madness II. Learn from us.

4. Lab tests that count, and how to read them

It’s the free T3 and free T4 lab tests which have been superior for either diagnosis or dosing, not the TSH. And a key observation noted by informed thyroid patients is “where” a result falls in the so-called “normal” range that has meaning. Many key lab tests have helped us in our journey towards feeling wonderful again. Learn from us.

5. Symptoms that go along with hypothyroidism

To the contrary, there are clear symptoms that go along with the right lab tests to reveal hypothyroidism. Depression is overtly common in an undiagnosed or poorly treated hypothyroid state, as is afternoon fatigue, poor stamina, dry skin, hair loss, rising cholesterol, rising blood pressure, painful joints, and/or others. How do we know as informed patients? Because they go away when optimally treated on Natural Desiccated Thyroid. Learn from us.

6. T3 added to T4

Adding T3 to T4 has proven to also be far superior to T4-only, and to the contrary, it has NOT been “difficult to sustain therapeutic levels” if practitioners will simply learn from their patients how to use T3-only with T4. The same goes for the even more superior Natural Desiccated Thyroid. Learn from us.

7. Listening to your patients instead of dismissing them

Finally and most importantly, though we appreciate the intense medical training that all our doctors have received, it’s time to consider that we, as informed patients, might have something valuable for our doctors or practitioners to consider and open their minds to. It’s not just about clinical trials. It’s time to RESPECT AND LISTEN TO YOUR PATIENTS, THEIR EXPERIENCES, CLINICAL PRESENTATION, AND THEIR OWN INNATE WISDOM. Learn from us.

ANNOUNCING: A new powerful YouTube video in honor of thyroid patients worldwide: https://www.youtube.com/watch?v=2n0NfAUyOKo Please share this video to your blogs, private Facebook pages, groups, Twitter, email. Join the PUSH!

– Head on over the Stop the Thyroid Madness Facebook page and Like it for daily inspiration and information!

April 12th 2016 43 replies

Oh Jolly. Guess What the Endocrine Society Has Spouted This Time?

“A great deal of intelligence can be invested in ignorance when the need for illusion is deep.” ~Saul Bellow

And here we go again.

On April 1st, 2016 (which is April Fools Day–how appropriate), out comes an article in the Journal of Clinical Endocrinology and Metabolism which presents the latest updated position statement of the Endocrine Society, titled Compounded Bioidentical Hormones in Endocrinology Practice: An Endocrine Society Scientific Statement.

In other words, their last position statement on certain compounded medications came out in 2006, and this one trumps that one. And the implication is towards “increased regulatory oversight of all bioidentical hormones.”

Sounds innocuous enough, right? Certainly they are trying to be protective of us, right?

First, in case you don’t know much about the Endocrine Society, it’s existence began a century ago and is today the oldest “largest global membership organization representing professionals from the intriguing field of endocrinology.” Members come from 110 countries representing approximately 28,000 members, with 40 percent of them located outside the United States. They include scientists, physicians, educators, nurses and students. And you’d think that a society with such a vast array of members from 110 countries might have some innate wisdom, right?

Gulp.

The first gist of the article is first about compounded sex hormones…and here’s my summary of their position:

There is no other rationale for compounding your sex hormones other than having an allergy or intolerance.
Compounded hormones are risky.
Compounded hormones are dangerous.
Compounding Pharmacists, who are licensed professionals, are thus dangerous if their product is dangerous.
Reported successful patient experiences (and their improved lab results) with compounded sex hormones has no validity; only “randomized, double-blind, placebo-controlled trials” have validity.
Because there are no FDA-approved testosterone preparations for women, it should be completely avoided…so I guess the opposite logic applies?? i.e. that one should embrace FDA-approved medications like statins or the antibiotic Cipro with all their numerous side effects in all-too-many??
Synthetic estrogen and synthetic progesterone is the way to go.
Big Pharma products are the way to go.
Give all your money back to Big Pharma

If you have a subscription to Medscape, here’s a good summary of what the Endocrine Society stated about compounded sex hormones, including DHEA, but I think my summary above says it all.

But here’s where it really gets nauseating for informed thyroid patients

Says the same Endocrine Society, as outlined in the Medscape article above (instead of my interpretation):

Levothyroxine (LT4) is bioidentical and a highly effective and safe therapy and is the treatment of choice for hypothyroidism. The complex tissue-specific deiodinase system converts T4 to T3 and supplies the proper amount of T3 to each of the body’s tissues according to its requirements.
Clinicians should evaluate patients with persistent symptoms (despite adequate LT4 therapy) for other causes of their symptoms and encourage patients to engage in healthy lifestyle measures.
Some of these patients may benefit from combination LT4/LT3 therapy, desiccated thyroid hormone, or compounded thyroid hormone, as long as symptoms and thyroid-stimulating hormone (TSH) (free T4) are monitored carefully.

Oh really??

To the contrary, millions of thyroid patients from the past 50+ years have noted and/or reported on the following while on T4-only:

Unresolved or accumulating problems like depression, adrenal stress, anxiety, easy weight gain, difficulty losing weight, easy fatigue, poor stamina, easy sickness/slow recovery, joint pain, painful feet, hair loss, dry skin, rising cholesterol, rising blood pressure, heart problems, kidney problems, other mental health issues, and hundreds more as reported here.
A poor conversion of T4 to T3 due to a myriad of real biological and normal life events which can negatively affect that deiodinase conversion of T4 to T3, such as aging, the normal stress of life circumstances, inflammation, low iron, and just plain bad genetics, to name a few. The body is not meant to live for conversion alone!
Lousy outcomes from being held hostage to the dubious “normal TSH lab range” are rampant. The TSH is a pituitary hormone and can never discern if all our tissues and organs are getting enough thyroid hormone from conversion alone.

So all of you who are esteemed members of the Endocrine Society, we as informed thyroid patients who live in our own bodies and have our own intelligence and wisdom, challenge you to consider the following questions:

Can you really call T4-only “effective and safe” in light of the myriad of continued hypothyroid symptoms that patients have noted or reported for 50+ years while on Synthroid, levothyroxine, Tirosent or any other brand of T4-only…sooner or later?
In light of the fact that T4-only results in numerous organic and tissue problems like depression, a low metabolism, joint pain, high blood pressure, rising cholesterol and so much more…does it really meet the body tissues requirements?
If T4-only meets all the body’s tissue requirements, why does nature cause a healthy thyroid to give not just T4, but also direct T3 and calcitonin?
If all those continued and persistent hypothyroid symptoms on Levothyroxine are due to “other causes” or “unhealthy lifestyle choices”, why in the world do these same individuals see them all go away when they get on Natural Desiccated Thyroid and find their optimal dose (which has nothing to do with the TSH)??
Why is it that when patients are held hostage to the dubious TSH range, they continue to have clear and/or rising hypothyroid symptoms?

– Have you Liked the Stop the Thyroid Madness Facebook page? It gives you daily inspiration and informative information based on years of thyroid patient experiences and wisdom as record on the Mothership of Thyroid Patient Experiences: STTM!

– You can comment to the Endocrine Society as to their views right on their own Facebook page: https://www.facebook.com/EndocrineSociety/

– Check out this video by Hugh Melnick MD about the superiority of NDT over synthetic T4: https://www.youtube.com/watch?v=muorjvQ4DUE

– Share this blog post below. Let’s spread the word about this!

April 5th 2016 50 replies

Read what this Eye Doctor Observed in His T4-only Treated Patients!

The following Guest Blog Post has been written Matt Dixon, OD who currently practices optometry in Perry, Georgia.

And not only did Dr. Dixon find himself with hypothyroidism, he made quite an interesting observation: 90% of his patients currently taking levothyroxine still have symptoms!

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So how did an optometrist (eye doctor) become passionate and obsessive about spreading the news about what Janie calls the “Madness”?

My personal journey

I don’t quite fit the typical patient profile for a hypothyroid patient. I’m not female, no weight issues. I’ve always been very active. Yet when the symptoms started, I was clueless about where they came from or that they all could even be related.

All eye docs are trained to recognize thyroid eye disease, but truthfully, we focus on end-stage symptoms of Grave’s disease and the ophthalmopathy that often comes with it. And the typical optometrist does not encounter this very often. I had no clue that in my own practice, hypothyroidism was one of the most common conditions I see.

I suppose my first symptoms were body aches and pains. I had always experienced annoying back issues and I presumed that deterioration was setting in as I became older (40’s). I’ve also always been cold-natured. And by 2010, I noticed that I was struggling to make it through the work day. So by the end of the day, I was exhausted. In fact, I was no longer exercising, but found myself buried on the couch as soon as I came home, not getting up until I forced myself to climb into bed. Once I made it to bed, I couldn’t fall asleep and became addicted to Ambien. When the alarm clock woke me up the next morning, my wife had to literally pull me out of bed. If I ever forced myself to jog, I felt as if I was carrying a 25 lb. backpack. I also began to struggle with unexplainable stress and anxiety.

But what finally prompted me to seek answers was in fact eye-related. I was driving my kids home one night and the road in front of me actually moved suddenly from left to right. I hit the brakes and feared for our safety! My 17 year old son took the wheel and we made it home.

The madness for me began

My physician at the time is a well-liked internist in my community. I made an appointment for a checkup complete with blood work. I had some issues that I was concerned about, but neither the assistant nor doctor reviewed my symptoms.

I went back in a week and promptly received a prescription for Synthroid for hypothyroidism. With little discussion about the disease, I headed to the pharmacy. After a couple of weeks I began to improve. But I wanted to know more. I found the vast list of hypothyroid symptoms online and could not believe how many I was experiencing. I read enough to know that elimination of symptoms was the best way to dose the medication and focusing on TSH only would lead to under-treatment.

More importantly, if my doctor did not know any of my symptoms, how could he know when I was adequately treated? It was time for a new doctor.

Why do MD’s undertreat hypothyroidism?

My new doctor, unlike the previous one mentioned above, did review my symptoms and pledged to increase Synthroid until my TSH was reduced to around 1. I made sure they were paying attention to how I was feeling. Yes, I improved tremendously and found my happy place on brand name Synthroid. But I did move over to natural desiccated thyroid (NDT) and was even happier. As I adjusted to the new medication and found the correct dosage, I was able to get through the day with full energy and better mental focus. Most days I am symptom free.

In my area, I have yet to find more than a handful of docs who use NDT with any frequency. In my patient population, I rarely encounter a patient on NDT unless I have coached them to find a way to get the prescription. (Optometrists are licensed to prescribe oral medications but only for eye conditions)

Synthroid is the number one prescribed drug in America!

This is no accident and it will not be easy to battle the industry that achieved this coveted ranking. Doctors clearly have been trained to use synthetic T4-only meds as the treatment of choice, having been convinced that it is highly effective. Trying to change this at the medical school level will likely never happen. Attempts to enlighten physicians who are convinced that levothyroxine treatment and normalizing TSH levels is the best care will rarely lead to change. In fact, general practitioners and internal medicine docs will continue to get it wrong as long as endocrinologists and the American Thyroid Association (ATA) promote Synthroid religiously. Those who have seen the light, thanks to educators like Janie Bowthrope, will laugh (then cry) when they read the preview from the ATA’s published pocket guidelines http://eguideline.guidelinecentral.com/i/521958-ata-hypothyroidism-pocket-card How could these smart folks be so misinformed and allow patients to suffer?

What can one eye doctor do?

I’ve decided to review residual symptoms with every patient who comes into my office taking any form of hypothyroid medication. The majority of them have never reviewed such a list! Occasionally, a patient will not circle a “single symptom”, but more often patients will have “several” symptoms. I offer a 3-page summary of how hypothyroidism can be properly treated and, of course, I have them google STTM. After counseling over 100 of these patients (with only one complaint), many have returned to say thank you. Sadly, most patients get the push back from their MD and will remain on T4-only meds. I’ve also learned that if a physician has not studied the use of natural desiccated thyroid and is only committed to normalizing TSH, even the patients who convert to NDT may still suffer due to ineffective dosing.

I treat many patients with dry eye syndrome, which is very common and sometimes costly to treat. I am convinced that treating dry eye syndrome in a patient who is undertreated for hypothyroidism is like trying to change a flat tire on a car that is still moving. Every eye doctor should take an interest in this disease even if for this reason alone!

What can a patient do?

Refuse to tolerate inadequate treatments. Be passionate about your own health. Recognize that very good doctors with good intentions have been misinformed and may be facing tremendous pressure in our rapidly changing healthcare system. They do not quickly change deeply held beliefs when it comes to recommended treatments.

Study Janie’s recommendations. Make an effort to help your physician understand. https://stopthethyroidmadness.com/doctors-need-to-rethink/ When seeking a new doctor, nurse practitioner, physician’s assistant or osteopath, ask questions before you make an appointment. And do not assume that a board-certified endocrinologist is any more enlightened about this disease.

Final thoughts

My best analogy in attempting to drive home the importance of optimal treatment of hypothyroidism in my patients is to show them their vision as it would appear through a half-strength pair of glasses. I ask them if they would be happy to see like this. I ask them how quickly they would find a new eye doctor who prescribes full-strength glasses. They get it. I’m passionate about this disease and the patients who are literally suffering and feel uninvited to shout “I feel like crap!” to a doctor who won’t listen. Together, we will make a difference.

Matt Dixon, OD

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Dr. Dixon has practiced in Perry and Warner Robins, GA for over 25 years. He provides comprehensive eye care and frequently counsels patients regarding wellness. He has written numerous articles on eye disease and the business of optometry.

He is married to Jenna and has 3 children and 2 dogs. He is an aspiring songwriter and has recorded 2 albums. Thanks to NDT, he is quickly becoming a CrossFit addict. www.drmattdixon.com

February 20th 2016 164 replies

Tag: stop the thyroid madness