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Here we go again, thyroid friends: Endocrinologists wear their pointed DUNCE hats.

Duncecap

Ah me.

Ever heard of Clinical Thyroidology?

It’s a physician-targeted publication by the American Thyroid Association (ATA). The ATA states they are the “leading organization devoted to thyroid biology and to the prevention and treatment of thyroid disease through excellence in research, clinical care, education, and public health.”

And a Letter to the Editor in the December 2013 publication of Clinical Thyroidology only underscores why so many thyroid patients report that they…

  1. Avoid Endocrinologists like the plague for the treatment of their hypothyroidism.
  2. Can hardly contain their disgust about Endocrinologists they have seen!

The letter is based on the March 2013 study I have mentioned before, titled “Desiccated thyroid extract compared with levothyroxine in the treatment of hypothyroidism: a randomized, double-blind, crossover study.” It was done by the Department of Endocrinology at Walter Reed Military Medical Center and headed by Thanh D. Hoang, DO and associates.

The objective of the study was to investigate the effectiveness of DTE (acronym for Desiccated Thyroid Extract, which is more popularly termed Natural Desiccated Thyroid for thyroid patients) compared with L-T₄ (more popularly known as T4-only for thyroid patients).

At the conclusion of the 16-week study, they found that…

“34 patients (48.6%) preferred DTE therapy, whereas 13 (18.6%) preferred levothyroxine; 23 (32.9%) did not specify a preference, he said. Further analysis confirmed those who preferred DTE lost even more weight over a 4-month period.” i.e. the patients who preferred it “lost 4 lb during the DTE treatment, and their subjective symptoms were significantly better while taking DTE as measured by the general health questionnaire-12 and thyroid symptom questionnaire (P < .001 for both).”

Yet the study concludes: “DTE therapy did not result in a significant improvement in quality of life”.

And why did the study conclude there was no significant quality of life improvement? Is it possible that this study was flawed in ways they don’t understand…

Two easy answers:

  1. Patients canNOT be held hostage to the TSH lab test (which the study did for those participants) if we want to find that “significant” quality of life improvement!   When thyroid patients are at their very best with desiccated thyroid, they end up finding their TSH is below the so-called “normal” range, and without one iota of “hyper-like symptoms, i.e. no bone loss or heart issues”. (Hyper symptoms will only occur if there is an undiscovered or untreated cortisol or iron issue. See #4 below).
  2. We have to have optimal cortisol and iron levels with desiccated thyroid to achieve that “significant” quality of life improvement!

Back to the Letter to the Editor….

Doctors David S. Rosenthal, MD and Kenneth H. Hupart, MD proceed to present misinformed criticism and obtuse conclusions. The last part of their letter states the following…and I have bolded what I’m going to respond to:

…..Such nonphysiologic changes in serum T3 [serum T3 rose 23% and 36% in the participants] after DTE administration and resultant risks have long been known (2) and are the subject of concern (3). 

 

Exploring a role for DTE in the treatment of hypothyroidism with a well-designed, blinded, randomized clinical trial is laudable. However, when evaluating a therapy for a condition that affects millions of patients and for which an effective treatment already exists (4), this clinical trial should be powered and designed to detect adverse consequences. When the goal is physiologic replacement, care also needs to be exercised that normal physiology is restored. The study of Hoang and colleagues is provocative, but it does not achieve the minimum standard required to alter current clinical practice.

And my response to what I bolded:

  1. Risks? Concern? When are the risks and concern going to be mentioned about T4-only medications—the latter which forces us to live on ONE hormone, in spite of the fact that a healthy thyroid would be making FIVE. Where is the concern about the fact that a huge body of patients worldwide have continuing hypothyroid symptoms in their own degree and kind, either at the beginning of T4-only treatment, or the longer they stay on it? To the contrary, WE have concern when our doctors repeatedly ignore or blame those clear symptoms of continued hypothyroidism on other issues!
  2. Why are you so concerned about a higher FT3?? Thyroid patients have been doing fabulously, and have seen their lives change, on desiccated thyroid for over a decade now, and especially when we find our FT3 in the upper quarter of the range. Before that, there were a good sixty years of near-exclusive desiccated thyroid use! A higher range FT3 has done nothing more than strengthen our hearts, lower our cholesterol and blood pressure, rid us of depression and anxiety, improved bone strength, helped us lose weight, taken away the need to nap, improve our gut health, given us back our lives…and so much more.
  3. Can you be SO blind as to think that T4 treatment is that “effective”? Are you that destitute of observation about the clinical presentation of your T4-treatment patients who, sooner or later, complain of depression, rising cholesterol, higher blood pressure, aches and pains, hair loss, gut problems, the need the nap, heart problems, anxiety, weight gain and more symptoms of a POOR treatment?
  4. Have you not figured out that “adverse consequences” on desiccated thyroid, or even T3-only, are related to either inadequate iron and/or a cortisol problem? Patients are so FAR ahead of you in knowledge about the problems that cortisol and iron problems can cause with desiccated thyroid…and what to do about it. Once we correct those, we SOAR on desiccated thyroid.

A better way to look at the Walter Reed study

Nearly 49% preferred desiccated thyroid! That is nothing to sneeze about! It means something. It sends the beginning of the right message. And yes, it would have been a far greater percentage if those in the Endocrinology department had understood why it’s important NOT to go by the TSH, and why the participants needed to first be properly screened for their iron and cortisol levels, then property treated! And by the way, lab results have NOTHING to do with just “falling in the normal range”.

To all thyroid patients and friends worldwide:

Sadly, we all know that the majority of Endocrinologists we have seen wear Dunce hats. Of course, there are some exceptions in the Endocrinology field! We applaud those few courageous Endocrinologists who have dared to listen to our experiences and positive clinical outcomes.

But too many remain in a stubborn, dark world of their own, represented by the comments above—a mindset which only keeps us sick.

Your solution? Give your money elsewhere!!! Give your money to medical professionals who live in a lighter world and have an understanding of the efficacy of Natural Desiccated Thyroid (NDT), or even T3-only use, and who will let you teach them about the problems of cortisol and low iron, how to treat both, and how to read labwork (as the book will also help you do). P.S. Spanish in on sale for a limited time.

Seize the wisdom,

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39 replies

Amazing and brutally honest “Tell It Like It Is” letter to her lousy Endocrinologist

ENDOCRINOLOGIST SOMEECARDFor years, a huge body of thyroid patients have remained hypothyroid, or gotten worse with increasing hypothyroid symptoms, due to believing in their doctors. 

And the worst group of doctors, as reported again and again by thyroid patients, have been Endocrinologists. So when a new person on any patient forum states they are looking for an Endocrinologist, more experienced thyroid patients wince. 

And this is why Stop the Thyroid Madness, and most especially the book, exists–to educate you about successful patient experience and wisdom so that in turn, you can recognize what is good doctoring, and what is NOT…in any physician.

Below is a graphic letter written by an appalled patient about her disappointing experience with her Endocrinologist. Nearly any thyroid patient can identify!

Dear —–,

I am writing to you as an ex-patient.

I saw you as a hypothyroid patient with significant weight gain, extreme fatigue, dry skin and poor concentration. You decided that I was “fine” on 50mcg of Thyroxine because my TSH was 3.9. You also suggested that I attend a bariatric clinic for weight loss.

I saw you a second time with multiple biochemical abnormalities. They were high cortisol, low bicarbonate, high anion gap, detectable CRP, and detectable ANA. You told me that none of these results were anything to worry about. 

I sought another doctor, because whilst you may be comfortable in completely dismissing numerous abnormal results in someone who remains symptomatic of hypothyroidism, I was not comfortable with this.

Since seeking a second opinion, here are the improvements I have experienced:

* no longer gaining weight

* no longer have dry skin

* no longer exhausted 24/7

* bicarbonate is now in the normal range

* anion gap is now in the normal range

* TSH is now 1

* I no longer need to take salt tablets in order to correct salt wasting

I have also received a diagnosis of Adrenal Insufficiency. This was gained via 4 separate saliva samples over a 24-hour period, which allowed me to see my cortisol fluctuations throughout the day. As I explained to you, I felt that my cortisol was too low during the day and too high at night. This is exactly what my salivary cortisol results show.

You ordered a 24-hour urinary cortisol test for me, and I asked if it would show you my fluctuations throughout the day. You said that it would. I want to draw your attention to your completely erroneous statement. I have no doubt that you were simply trying to end the discussion with me.

My urinary cortisol tests were normal, as I expected they would be. But, this normal result did not indicate just how inappropriate my cortisol secretion is. That is, too high at night and too low during the day. I am thankful that I did not remain under your care, as I have no doubt that you would have continued to minimize my concerns regarding my cortisol levels.

The treatment I have received since leaving your care is T3 medication (RT3 and liver enzymes are both abnormal until I correct the cause and then move to Natural Desiccated Thyroid). This is the first time in years that I have seen an improvement in my thyroid health (lowered TSH, increased fT3), and my adrenal health (I no longer require salt tablets). I don’t think you ever bothered to test my aldosterone levels, which I consider to be negligent in a case where the patient is urinating frequently and requiring salt supplementation.

You and your peers are quick to label hypothyroid patients as lazy — not outright, but by your tones and your suggestions. Rather than offer me an increase in Thyroxine, you condemned me to many more months of poor health. You felt I was better off going to a bariatric clinic than changing my medication! And I know that you would never have offered me an alternative thyroid medication. So, under your care, patients such as myself (who have felt no benefit from Thyroxine) are surely just lazy drama queens. Or so your behaviour would indicate. It’s even more distressing that you maintain this attitude despite clinical signs of hypothyroidism (weight gain, dry skin, exhaustion), and despite multiple biochemical abnormalities.

It’s odd that Thyroxine is the standard medication for hypothyroidism, as effective treatment with this requires that T4 is converted to T3. For many patients, it may be a fair assumption that this conversion process will take place. However, for those of us with continued symptoms and biochemical abnormalities despite “adequate” doses, it is clear that something is not happening as it should. For me, the dramatic differences in my health since beginning T3 medication has demonstrated that conversion was not taking place as it should. You and your peers are happy to call me lazy, but I know that a simple medication change is all that was required to regain my health.

I am aware that T3 medication is dangerous for heart health at high doses, and that this fact makes many doctors avoid its use in cases of hypothyroidism. However, I have three reasons to oppose this conduct:

1. Most medications are dangerous in high doses. T3 is not alone in this regard.

2. In someone with hypothyroidism who has experienced no benefit from Thyroxine, supplementing with T3 medication (or even better, natural desiccated thyroid) is just replacing what the body is struggling to create. This does not mean that the patient’s T3 levels are suddenly excessive, or consequently dangerous.

3. The damage done by inadequately treated hypothyroidism is significant, and certainly greater than low doses of T3 supplementation

So, I write to you both despairing at the level of care you provided, and relieved that I’ve found better care elsewhere. I’m sure you’ll ignore this letter, as you and your peers remain adamant that Thyroxine is the only form of treatment, and those who fail to see improvements must themselves be lazy or unmotivated. This attitude is clearly that of people who have never experienced the devastating effects of inadequately treated hypothyroidism. I hope that one day you and your peers will be able to show empathy for patients such as myself, whether you’ve personally experienced hypothyroidism or not. Whilst personal experience of hypothyroidism should not be required in order for doctors to be empathetic, walking a mile in my shoes would no doubt change the way you treat your patients.

I will continue to see improvements to my health with the addition of T3 medication, and I will be thankful that I am no longer under your inferior care.

A happily-former patient of yours

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  • See why actress Sofia Vergara is doing thyroid patients no favor by representing Synthroid here. 
  • Been told you have Chronic Fatigue Syndrome? It might be more than you think.
  • Are you on Flat STTM?
  • Identical UK twins talk about their hypothyroidism here.
24 replies

An Endocrinologist peeks through, RAI disaster, and why synthetic T4 is only a mirror image

The clueless Cuckoo’s Nest of Endocrinology just goes on and on, according to repeated negative comments by thyroid patients in groups after they have visited with an Endocrinologist.  i.e. you will be put on T4-only and dosed by the TSH, then told you are just fine and only need an antidepressant or statin or BP med.

But in a recent issue of the Clinical Thyroidology For Patients (A Publication of the American Thyroid Association), Volume 5, Issue, 5, 2012, there comes the question: Should patients with no functional thyroid gland be treated with both thyroxine (T4) and triiodothyronine (T3)? 

Of course, the question is like asking “Should those starving be given food? ”  The article starts out stupid, stating (in bold):

  1. “…the absence of T3 production by the thyroid can be overcome by maintaining higher circulating T4 levels, resulting in normal circulating levels of T3. This is why T4 in the form of levothyroxine is the main treatment for hypothyroid patients”.  Patients all too well know how ludicrous this is.
  2. “Recent studies have generally found that there is no clinical advantage in adding T3 to the usual T4 replacement regimen.”  What about this study which reveals that there can be inadequacy of peripheral deiodination of T4 to T3 in some, or this study which found no support for the hypothesis that people with symptoms of hypothyroidism but thyroid function tests within the reference range benefit from treatment with 100 µg thyroxine daily, or this study which found that triiodothyronine added to thyroxine improved mood and neuropsychological function, and more.

But then comes the little peek from the door by the MD author after mentioning the 2011 study titled “Levothyroxine monotherapy cannot guarantee euthyroidism in all athyreotic patients.”  The concluding paragraph has this in it:

The present study identifies a subgroup of hypothyroid patients, namely those whose thyroid was surgically removed who do not have normal FT4 and F3  levels despite normal TSH levels on T4 alone. What is not shown by this study is whether or not combination therapy (T4 plus T3) is beneficial in these patients. Further studies are needed to sort this out.

Further studies are needed?? They are already out there! Besides, if 99% of Endocrinologists would use the proverbial toothpick to open up the eyelids of their minds, they just might notice all the continuing hypothyroid symptoms their patients have while on T4-only meds whether STUDIES prove anything or not. WAKE UP!!

MAN-MADE SYNTHETICS ARE ONLY A MIRROR IMAGE OF THE REAL THING

Scientists have always been able to synthetically duplicate substances by creating the same mix of molecules, aka a synthetic copy of the original compound. That’s what levothyroxine (l-Thyroxine) is a man-made copy of T4 (Thyroxine). Synthroid is an example. But it’s a mix of the left handed nature-made combination of molecules, aka L-(Laevorotary), along with the synthetic, man-made right handed version, aka D-(Dextrorotary), i.e. the latter is a mirror-image, not a direct image, according to this article.

The author feels it doesn’t act like a hormone.  So though your blood will show you have an increased level of levothyroxine, it’s not the same as having an increased level of the natural t4.  And of course, we as thyroid patients also know that the body is NOT meant to live on a storage hormone alone, even if it was pure. We also need direct T3 added to that T4. Even  natural desiccated thyroid provides direct T3. So with natural desiccated thyroid, we get T4, T3, T2, T1 and calcitonin.

REFLECTION ON WHY RAI WAS THE WORST THING SHE EVER DID

Read thyroid patient Robyn Thompson’s story on why she so regrets doing RAI (Radioactive Iodine), and how her Graves TSI antibodies are now worse than ever before, here:  //www.stopthethyroidmadness.com/robyns-experience-with-rai-graves/

HOW TO PROTECT YOUR ADRENALS IN THE FACE OF STRESS

I loved what thyroid patient Joy McHargue said to someone on the STTM Facebook group when asked what to do about high stress. Her answer:  Pray, salt, magnesium, rest, adaptogens of your choice, Vitamin C, talk about the stress to a calming person, take time away from the stress doing something fun regularly, epsom salt baths, fresh air?

THE STOP THE THYROID MADNESS BOOK IS NOW EVEN MORE REVISED! 

I added info about the T3 Circadian Method for Adrenal fatigue, refined information throughout, and cleaned up misspellings.  You can order the book at the bottom of any page on STTM, or via the tiny photo.

JANIE’S LATEST INTERVIEW: http://podroom.a2zen.fm/podcasts/krystalya-marie-energy-healing/stop-the-thyroid-madness-with-janie-bowthorpe-on-e

P.S. If you are receiving this via the Email Notification, DO NOT reply to the email to comment on this post. Click on the title of this, which will take you to the actual blog post, and Comment there!

3 replies

“Are Endocrinologists just DETERMINED to be stupid?” ask some thyroid patients.

(Though this was originally written in 2011, it has been updated to the present day and time. Enjoy!)

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Will it ever end?

A very troubling article

On March 21st, 2011, from the Endocrine Today website, comes the article Hypothyroidism only partially responsible for decreased quality of life in Hashimoto’s thyroiditis. And this article has so many troubling comments and wording that it has made some thyroid patients question whether their Endocrinologist can really help then.

For example, the article notes that there seems to be a “higher symptom load and the lower quality-of-life scores in the group of patients with increased anti-TPO levels”, which can include “Chronic fatigue, dry hair, dysphagia, irritability and nervousness”.

Yet, the article states, these patients have

    • “normal thyroid function”
    • are “euthyroid”
    • have an “ideal biochemical response to thyroid hormone replacement therapy.”.

Are you kidding me, say many thyroid patients???  Euthyroid technically means “the state of having normal thyroid gland function.” Yet, chronic fatigue, dry hair, dysphagia (difficulty swallowing), irritability and nervousness are far from normal, besides being classic hypothyroid or Hashimotos symptoms, as well as having potential adrenal issues from having poorly treated hypothyroidism!

And of course, most informed thyroid patients know that ” euthyroid” and “normal” and “ideal” in the mind of poorly-trained doctors refer to an ink spot on a piece of paper called the TSH lab result and NOT cellular receipt and/or use of thyroid hormones. The TSH is a pituitary hormone, not a thyroid hormone. The TSH lab test has failed patients for decades, just as has T4-only like Synthroid, levothyroxine, Eltroxine, etc!

Also mentioned is a particular Austrian study involving 426 women aged 19 years or older who were undergoing surgery for benign thyroid disease. When patients come on thyroid groups and report Endocrinologists who want to remove their thyroids simply because they have the treatable Hashimotos disease, you have to wonder why 426 women were having surgery for “benign thyroid disease”…

But in spite of all the above, there is hope!

Hashimoto’s patients have become wise and informed. To read all the ways patients have learned to adequately treat Hashimotos, go here.

To find out if you now have an adrenal problem, go here. This is important to know because it can be problematic in raising NDT if you have low cortisol, or high cortisol. Thus, the need to treat it first.

To find a good doctor to work with, and/or teach while you are working with, go here.

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Do you look back and wonder about the fact that your thyroid was taken out?  Let us hear your story by commenting on this post. What has been your experience with an Endocrinologist? Tell us about it.

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** Have you Liked the STTM Facebook page? It provides daily information and inspiration just for thyroid patients!

** Check out recommended patients groups on the internet.

** Stop the Thyroid Madness is available in TWO different books! //www.stopthethyroidmadness.com/comparing-the-sttm-books/

26 replies

Thyroid Tidbits that just might tickle your fancy, give you hope, or make you laugh in derision

A GOOD REPORT ON THIS OVER-THE-COUNTER THYROID SUPPORT

A gal recently used the Contact Me form on STTM to ask if I’d ever compiled patient experiences on ThyroGold–a nonprescription, over the counter, desiccated thyroid formulated by Dr. John C. Lowe and made from the thyroids of New Zealand cows who are pasture-fed. I said no–haven’t heard yet from anyone on it long enough.

But just thirty minutes later, here comes an email from a gal who has been on it four months, feels very good with many noted improvements. She is so thankful, and stated STTM gave her the confidence to feel she could work with ThyroGold. And lo and behold, her TSH-worshipping, Synthroid-prescribing doctor is watching her progress, and pleased.

COCONUT OIL AND ALZHEIMERS

Many a thyroid patient have heard of the benefits of coconut oil, especially as a food product which can stimulate your metabolism.

But a Dr. Mary Newport discovered in 2008 that just 4 teaspoons a day of virgin coconut oil just might have the right ingredients–medium-chain triglycerides which produces ketones by the live–to stop the onset or even reverse some of the damage caused by Alzheimer’s.  She witnessed this in her own husband. You should read her story here, and more on the Coconut Ketones website here.  Since my mother, and her father, both got Alzheimers by the time they were eighty, this especially interests me!

In fact, coconut oil just night have the same successful results with Parkinson’s disease, Huntington’s disease, multiple sclerosis and amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease), drug-resistant epilepsy, brittle type I diabetes, and type II (insulin-resistant) diabetes. WHOA!!

Says Dr. Newport:

Our cells can use ketone bodies as an alternative fuel when glucose is not available. Brain cells, specifically neurons, are very limited, more limited than other cells, in what kinds of fuel they can use to function and to stay alive. Normally, they require glucose (sugar), but they can also use ketone bodies. Humans do not normally have ketone bodies circulating and available to the brain unless they have been starving for a couple of days or longer, or are consuming a ketogenic (very low carbohydrate) diet, such as Atkins. In Alzheimer’s disease, the neurons in certain areas of the brain are unable to take in glucose due to insulin resistance and slowly die off, a process that appears to happen one or more decades before the symptoms become apparent. If these cells had access to ketone bodies, they could potentially stay alive and continue to function.

P.S. Did you see the “one or more decades before symptoms become apparent”? That means we need to be on coconut oil daily NOW,

ARE ENDOCRINOLOGISTS FROM ANOTHER PLANET?

A patient on STTM’s Facebook page recently reported that since her HMO would only allow her to see an Endocrinologist, off she went to the appointment.

And what does her new Endo tell her? Ready? That her TSH was fine, low T3 & T4 meant nothing, and there is NO evidence that Adrenal Fatigue is real (in spite of the fact that when she tries to raise her Armour, her heart goes wacky–a sure sign of low cortisol). She concluded that there is “nothing like being lectured on things when you know more than they do.” She felt forced to keep her mouth shut by his reactions if she did try to teach him something, and just resigned to “agreeing with everything he said and left”.

And her summary of that Endo escapade? “My dose of Armour is right, makes no difference I’m fatigued, had to quit my job, leg swelling so bad I can hardly get around. None of that mattered. ONLY the TSH test.”

And unfortunately, her comment about knowing more than the doctor is very, very common now thanks to STTM and patient groups. All we can hope for are those doctors who are humble and open-minded to what we now KNOW to be true!

TWO OF THE MOST IMPORTANT CHAPTERS IN THE STTM BOOK

Chapters 3 and 11

REMEMBER ME MENTIONING THE GAL WHO PUT THE STTM BUMPER STICKER ON HER HUSBAND’S CAR?

Well, he got followed into the Barber Shop this time by a male nurse! So now, he wants something to hand out to these folks who keep approaching him. haha. So she has made copies of the STTM FLYERS and he’ll have them in the car from now on. This is reaching people…one by one!

60 replies