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7 examples of buffoonery from The Endocrine Society of Australia about desiccated thyroid

The Endocrine Society of Australia (ESA) came out with their final position paper on Natural Desiccated Thyroid. Ready to throw up at what many hypothyroid patients will state is overt ignorance and condescending arrogance?? Are we not surprised??

Below are 7 excepts from this position paper.

Please note: the following terms are referring to the same product: desiccated thyroid, thyroid extract, NDT, natural desiccated thyroid. By prescription, it’s usually porcine, but there are over-the-counter bovine versions. Thyroxine refers to T4-only, aka levothyroxine, one of five thyroid hormones and a storage hormone alone. In Australia, common brands are Oroxine, Eutroxsig and/or Eltroxin. 

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1) “Desiccated thyroid or thyroid extract is not a pure product, not approved by the TGA [Therapeutic Goods Administration], not available on the PBS [Pharmaceutical Benefits Scheme], not produced by a pharmaceutical company, not subject to existing TGA regulations, has limited quality control, and is marketed as a “bioidentical hormone”, while “bioidentical” has been determined by the FDA in the USA as a marketing term.”

Now who wouldn’t want their meds to be pure?? But wouldn’t you love to know what their definition of pure is in their swipe of desiccated thyroid?  But ultimately, this negatively pudgy paragraph is only a set up for the rest of the paper, which is full of baloney statements.

2) “Is the reason some people fail to have complete relief of symptoms when tests show normal levels simply because there are other causes of fatigue, depression, and weight gain that are mistakenly attributed to the thyroid? Could a placebo effect explain the better relief of these symptoms from thyroid extract?”

Condescending ignorance to the max, say patients. For one, we know that “falling in the normal range” has nothing to do with it–it’s about where we fall in those ridiculous normal ranges that does have something to do with it.

And gee, funny that with an optimal amount of desiccated thyroid or T3 (along with good iron and cortisol levels, which is crucial), that “fatigue, depression and weight gain” goes away as reported by patients for YEARS.

And the TSH lab test, which we know is one of the labs being referred to, is useless while on desiccated thyroid–i.e. optimal, life-changing amounts of desiccated thyroid nearly always push the TSH quite low, which has NOT caused bone loss or heart problems (as a low TSH with Graves disease does). To the contrary, the right amount of desiccated thyroid has REPEATEDLY been known to improve bone and heart health in measurable outcomes.

Finally and more egregious, to use “placebo effect” as a way to explain the numerous and common positive effects patients get on desiccated thyroid is the height of condescending arrogance, many patients would exclaim.

3) “Despite claims of proponents that desiccated thyroid or thyroid extract are superior to thyroxine or combinations of T4 and T3 for most people with hypothyroidism, no controlled clinical trials have been published, and most endocrinologists are concerned that superiority is due to a placebo effect or an effect of overtreatment.”

Claims?? Since when are CLEAR and MEASURABLE health changes on desiccated thyroid by Australian thyroid patients (and worldwide) simply “claims”?? They include lowered cholesterol, better blood pressure, improved bone density, less weight gain (and in some, weight loss)…besides the obvious reported improvements in depression, better energy, softer skin and hair, removal of pain and so many more results.

And once again, the condescending conclusion that if one feels better on thyroid extract, PLUS has measurable changes, then SURELY it has to be in their heads and nothing going on physiologically. Let’s see, I’ve been on NDT for 15 years now, and if this logic is maintained, I have somehow continued to simply “delude myself” for a decade and a half that I have felt much better in my thyroid treatment THAT long…andddd somehow manipulated the measurable results in my health.

4) “Thyroxine is “Monitored; accurate and consistent “; Thyroid Extract is “Monitored; may be inaccurate or inconsistent” “

Yawn. The same weak and unfounded conclusions about desiccated thyroid we’ve heard before. Since when is giving us back all five thyroid hormones “inaccurate” or “inconsistent”? If it’s inaccurate or inconsistent, why have so many seen their lives change on NDT as they find their unique optimal amount, and for years?? If thyroxine is so wonderful, why do millions report continuing or worsening symptoms on the “accurate and consistent” thyroxine?

Oh wait, all of you whose lives have changed are just fooling yourself with placebo outcomes….

5) “The controversies surrounding the safety and efficacy of “bioidentical hormones” such as desiccated thyroid or thyroid extract illustrate the need for further scientific and medical scrutiny of these substances. Until such studies are completed, physicians should exercise caution when prescribing “bioidentical hormones” and counsel their patients about the controversy over the use of these preparations.” 

Really?? Is it SAFE to be on only one of five thyroid hormones when there are numerous reasons why the conversion to T3 can be blocked, either from the beginning or the longer someone is forced to rely on conversion alone??  See those reasons on this page.

Is it SAFE on thyroxine when so many see rising cholesterol, rising blood pressure, bone thinning, heart problems, and/or a lowered immune function?? The “controversies” are those manufactured by clueless Endocrine Societies, NOT by thyroid patients who worldwide have had lives changed on desiccated thyroid if they are allowed to find their optimal amount (which has to have good iron and cortisol levels).

And by the way, there is ALREADY science about the efficacy of NDT or T3 in one’s treatment…BESIDES that fact that a huge growing body of thyroid patients are reporting lives changed in totally positive ways.

6) “In general, desiccated thyroid hormone or thyroid extract, combinations of thyroid hormones, or triiodothyronine [T3] should not be used as thyroid replacement therapy.”

In other words, as the most damning, cruel and ignorant part of this statement, it’s saying that we, the Australian Endocrine Society, don’t give a damn if you are suffering on thyroxine…don’t give a damn if you have genetics which prevent the conversion of T4 to T3 and thus might need T3-only to reclaim your health and well-being…don’t give a damn if you have high RT3 on thyroxine that being on mostly T3 would lower…don’t give a damn if there are a huge growing body of thyroid patients whose lives have changed on thyroid extract (of which many changes ARE measurable)…and don’t give a damn that a healthy thyroid also gives people direct T3 and does NOT force people to live for conversion alone.

Oh and remember the reasoning above that desiccated thyroid is not pure–implying that thyroxine is…yet now we have a widening of the cruelty by lassoing in triiodothyronine (T3) as a product which IS approved by the TGA, yet now is also not recommended??

7) “A registry of adverse events related to the use of bioidentical hormone preparations, including desiccated thyroid or thyroid extract, should be supported by the TGA and could be managed by an external organization, as the TGA does not regulate or monitor these compounds.”

At face value, registering adverse events to any drug is a good thing.

Yet, we KNOW for a fact that most “adverse events” with desiccated thyroid are due to the FAILURE of doctors or research studies to understand that patients have to have the right amount of iron levels or cortisol when raising NDT to avoid those “adverse” reactions….just as patients should NEVER be dosed by the TSH “normal” range, which leaves patients underdosed and thus, continued or growing symptoms of hypothyroidism which could be termed “adverse events”.  Other situations which can cause “adverse events” with NDT include Lyme disease, chronic inflammation, and high heavy metals, of which of course, clueless organizations would simply blame the NDT instead of understanding the results of Lyme, inflammation and/or high heavy metals.

To see this position paper in its entirety: https://www.endocrinesociety.org.au/ESA_Position_Statement_%20Thyroid-Extract.pdf

Rattle, thyroid patients!! Speak loud and clear. Send the URL to this blog post to your private Facebook pages. https://stopthethyroidmadness.com/2017/06/27/7-examples-australian-endocrine-buffoonery/ Make this information even better by your informed comments here. Don’t be silent!!

BEST LIST OF HYPOTHYROID SYMPTOMS on the net (of which many occur while on thyroxine): http://stopthethyroidmadness.com/symptoms 

WHY T4-ONLY HAS RUINED MILLIONS OF LIVES over the decades: http://stopthethyroidmadness.com/t4-only-meds-dont-work

WHY DESICCATED THYROID or even T3 added to T4 has changed lives and how: http://stopthethyroidmadness.com/natural-thyroid-101

TWO MOST WIDELY READ and LIFE CHANGING THYROID BOOKS: http://www.laughinggrapepublishing.com 

43 replies

LYME SUCKS!! In Loving Memory of Paige Adams, FNP, B-C

Paige Adams, FNP, B-C UPDATED(Paige Adams died Sunday night/early Monday morning, due to her Lyme disease. And if you didn’t know her, I want you to.

In honor of Paige Adams, the Lyme Warrior….)

When I was contacting certain medical practitioners in 2014 to be in the STTM II book, one that I knew I wanted in there was Paige Adams.

Paige was a Nurse Practitioner with a fabulous reputation among patients as owner of The Center for Proactive Medicine in Nashville, Tennessee.

And Paige herself was a fighter! She had problems for many years and successfully treated her hormone imbalances like PCOS and infertility, Crohn’s disease, severe adrenal fatigue and Hashimoto’s disease. Perhaps that is why she specialized in treating difficult cases at her clinic…

And oh was Paige a fun and extremely loving individual, as so many others know! In our many email correspondences, she would start her message with things like “Hey Lovely Lady!” or “Hey Gorgeous!” or “Hi Ladybug!”. Or she would end her emails with “Much Love n Blessings”.  She always made me chuckle with her exuberant, sweet and loving personality.

Paige strongly supported this thyroid patient movement for better health care as well as our power in being informed patients and our best advocates. Her chapter happened to be about Reverse T3 in the Stop the Thyroid Madness II book, titled “Moving Forward with Reverse T3: The Causes and Health Implications”. And she wanted me to include all sorts of wonderful and cute graphics in the chapter, which you will see in Chapter 11. You can discern her dynamic personality in the way she wrote that chapter.

She concluded her wonderful chapter with the following words of wisdom:

The best best advice I can give to my patients is this:

– Eat clean (preferable gluten-free)
– Drink plenty of filter spring water
– Exercise to tolerance
– Find time to enjoy life and to laugh. I mean laugh a LOT!
– Get your face in the sun for even a few minutes every single day
– Keep your [internal] gutters and downspouts clean
– Get your caboose in bed for plenty of uninterrupted sleep every night

Paige also knew about the importance of B12, supported the use of Low Dose Naltrexone, understood personally about the MTHFR mutation, was concerned about the connection between certain viruses and cancer, was interested in genomics, supported the use of Natural Desiccated Thyroid in the treatment of hypothyroidism, and had an special interest in autism in children, many of whom she treated.

One of several treatments that Paige loved was the Myer’s Cocktail–an intravenous nutrient mixture that could contain high doses of the B vitamins as well as magnesium, vitamin C and sometimes calcium.

Paige was an “avid and outspoken animal lover”, too, which she never hesitated to talk about in her Facebook posts. Paige also loved the Alabama Crimson Tide.

And Paige had Lyme disease

For those who don’t know, and in simple terms, Lyme is a tick born infection via a bacteria of what is called the Borrelia type. It is estimated to affect 300,000 people a year in the United States and 65,000 people a year in Europe¹, even though many more individuals get bitten by a tick without getting Lyme.  The good news about the bite is that if it’s attached for less than 36-48 hours, there is less risk you’ll get Lyme.²  But it happens.

If someone does get Lyme, the signs and symptoms of the disease vary and usually appear in stages.³ Many will get a bullseye rash on the skin within the next week or more: some do not. Others will get flu-like symptoms, ranging from achiness to fever to fatigue. Over time, which can take months to years and especially if untreated, individuals can develop viral infections, inflammation, aches and pains, shakiness and/or neurological issues…to name a few. Lyme is nasty.

Paige, unfortunately, had active Neuropsychiatric Lyme Disease, which she explained to me in the Fall of 2015 and was fighting it all with IV antibiotics and a great amount of oral medications.  Also known as Lyme neuroborreliosis, it’s the neurologic involvement of either the peripheral or central nervous system.

Bottom line, Paige was one sick lady and fought like a champion. Her dear mother confirmed that she lost her battle with Lyme during the night. There will be no service, but as soon as her mother announces it, there will be a way to make donations, which I will include as a comment to this post.

Lyme disease and you

Do know that each person’s case of Lyme is individual with many variables, both in outcomes and treatment protocols. Many do quite well after treatment. For more information…

– A video to watch about Lyme: https://www.youtube.com/watch?v=6OdP8Jndnyk

– And another video by Dr. Horowitz about the co-infections that can go with Lyme: https://www.youtube.com/watch?v=O9a-2Nb2sbk

- – Here’s an interesting page where the results of this gal’s survey questions were tabulated about Lyme treatments: http://willtherebecake.org/2015/11/11/success-rates-of-various-lyme-treatment-options-a-personal-study/ The rest of the website is excellent.

More sites:

http://ilads.org/

http://www.lymediseaseassociation.org/

http://whatislyme.com/where-to-start-lyme-info-for-newbies/

http://www.tiredoflyme.com/http://www.betterhealthguy.com/blog

Groups:

– This group is for women only and focuses on abx: https://m.facebook.com/groups/243181499182129?ref=bookmarks
– This one is all about various herbal protocols like cowden, buhner, white     https://m.facebook.com/groups/263709223729311?ref=bookmarks
– This one follows dr. Klinghardt: https://m.facebook.com/groups/712530532196662?ref=bookmarks
– LDI: https://m.facebook.com/groups/828673227222144?ref=bookmarks
– Another Cowden group: https://m.facebook.com/groups/1547743332142929?ref=bookmarks
– Cannabis for Lyme: https://m.facebook.com/groups/1506598772889860?ref=bookmarks
– Lyme and mold (mainly follows dr. Shoemaker): https://m.facebook.com/groups/1485904731739075?ref=bookmarks

Dear Paige, you will be missed by so many people! Thank you for touching all our lives with your sweet spirit, highly positive outlook, loving attitude, tireless efforts to help others in your practice and passions…and your wonderful contribution to the STTM II book! And we all send our deepest condolences to your mother and the rest of your family and closest friends.

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  1. https://en.wikipedia.org/wiki/Lyme_disease
  2. http://www.cdc.gov/lyme/transmission/
  3. http://www.mayoclinic.org/diseases-conditions/lyme-disease/basics/symptoms/con-20019701

Here is a great article by Paige:

Intravenous Therapies – Miracle Help for All

And remarkably, this is the beautiful graphic she posted on Facebook the day before she died… We should all post it on our pages in her honor.

Paige Adams quote she posted

52 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

22 replies

How foods you eat, or don’t eat, can make or break your health!

Headshot StandingWhen you think of doing things that will make you healthy, what do you think of?

But there’s one more way to achieve health: what we eat or don’t eat!  The right food is bigger than we ever imagined for our health and well-being as thyroid patients, especially if you have autoimmune issues. And that is an especially important when the shelves of our grocery stores are filled with rows and rows of over-processed junk!!

The following STTM Guest Blog Post…about FOOD…was written by Jennifer Robins. She was diagnosed with several autoimmune conditions like Hashimoto’s disease, had chronic infections, plus Lyme disease. Jennifer became gravely ill and mostly housebound. When traditional medical treatments failed to help, Jennifer turned to food for healing! Yes, food. She removed grain, dairy and refined sugars and began eating “predominantly Paleo”. And because of that radical change in the way she ate, she started reclaiming her life, one whole food at a time. Read about her interesting story!

I remember growing up eating a standard American diet, missing little to no school, and having more energy than any one person ever could use. While my family did not eat out or frequent drive-through windows routinely, our home had it’s share of boxed “food”. As a family, we were “healthy.” We felt good and rarely visited the doctor.

It’s funny looking back, how people defined “healthy”. Rarely did we think about what goes into our bodies as defining health. Instead, we tended to gauge our health by how we think we feel, how many prescription drugs we are taking, and whether or not we have made any trips to the emergency room.

However, with autoimmune disease and other chronic ailments growing exponentially every year, diet and food sourcing is becoming increasingly more important.

Eight years ago after giving birth to two babies less than a year apart, I felt miserable.

I chalked it up to the obvious lack of sleep, the stress of having two babies so close together, and to the fact that my husband was preparing to deploy, leaving me behind with our infant and toddler.

Exhausted, frazzled, irritable, lightheaded, and overheated, I finally headed to my general practitioner to seek advice. She ran thyroid labs and they were “normal”, except for my TSH which read 0. Yes, 0. We agreed to follow up several weeks later and when I did, my labs were all in range, including TSH, FT4, FT3, and reverse T3. My low TSH had resolved yet I felt just as horrible if not worse than the month prior.

Eventually I sought out the help of an endocrinologist who discovered my thyroid antibodies.

My Anti-Thyroglobulin levels were more than double the upper limit. All other thyroid labs were in range, as they fluctuated between hyper and hypothyroid. I was diagnosed with Hashimoto’s and sent on my way. I tossed my prescription for synthetic thyroid replacement, as I just wasn’t ready for that step, whatever that meant.

I ended up reading about the connection between gluten and autoimmune disease as I scoured the internet looking for answers to my affliction. I was desperate to avoid taking thyroid replacement for the rest of my life. I ran the stool test looking for antibodies produced against gluten and came back positive. So I gave up gluten and was very compliant; but within the year resolved to start thyroid medication.

I researched natural desiccated thyroid and knew it was the best fit for me, so I found a doctor willing to prescribe it. Over the next year or so things leveled out, symptoms improved, and I felt like I could at least participate in my life. We moved to another military assignment, I began working out more regularly, started routine acupuncture, and realized I wanted another baby.

After a few months of trying, I got pregnant.

I was elated and I was feeling better than I had in a long time. My pregnancy was fairly uneventful other than managing my thyroid dosage, and my delivery was unmedicated–a goal I had had for awhile. I had 3 healthy children and life was good.

But around 5 months postpartum, I began feeling terrible. 

It was even more terrible than I felt after the first two babies were born. I chalked it up to juggling 3 babies and the hormone shift as well as the need to recalculate my thyroid dosage. I had let my strict gluten free lifestyle go as well and it was time to refocus. So I lowered my meds, cleaned up my diet, and tried to ride it out.

And I got worse. Much worse.

I became so sick in fact that I was housebound 90% of the time and often bedbound. Now I was stricken with neurological symptoms including brain swelling, vertigo, migraines, severe emotional lability (especially when my brain was inflamed), heart palpitations, disorientation, word searching, and more. It was a living nightmare.

I visited a new integrative doctor, in yet another new city and sought help.

She ran labs for viruses, candida, thyroid, adrenals, nutritional deficiencies, and infections and included urine, stool, blood, and hair. The results were overwhelming. I had elevated antibodies for so many types of infections I didn’t know where to start. She noticed I had a few antibody bands come back positive on a western blot for Lyme disease and suggested I test further. I fell down a rabbit hole of more testing, more doctors, and lots of medication recommendations.

Ultimately, I chose to treat the Lyme disease as it was insinuated that this could be the root of all my issues. I began multiple high dose antibiotics that I eventually took for over a year. I was back to strict gluten free eating, took over 40 supplements, probiotics, herbs, and anything else that my doctors recommended. I saw 3 different Lyme literate physicians (LLMDs) over this time.

And I got even worse. Ridiculously worse.

I was assured that this was “herxing” or bacterial die off. So I persisted, I stayed on meds, and life just kept getting more horrendous. I so often begged to die that I wondered daily when my last day on earth would be. I knew I was dying, I just didn’t know when or how long it would take.

But during this time I researched. I read and read and dug until there was nothing left to read. I kept seeing things about the paleo lifestyle for any number of ailments. Be it autoimmune or otherwise, it seemed I was being pointed in this direction for a reason.

Ultimately I made the decision to stop taking antibiotics and start focusing on rebuilding my immune system instead of destroying it.

Giving up the remaining grains and dairy was terribly hard, but it was the first time I began seeing ANY progress in this very long journey. Slowly but surely, I began reclaiming bits of my life back. I began chronicling my recipes, keeping a blog in secret, and eventually sharing it with others. I simultaneously took my already-gluten-free children off of dairy as well, so I needed a place to revisit recipes that kept them nourished and happy too. I noticed changes in all of us. My five year old’s sleep apnea and enlarged tonsils all resolved, my two year old’s enlarged glands in both her groin and neck resolved, and my son’s tummy aches disappeared without gluten and dairy.

I see now how life altering food changes can be.

I see that what you put in your body has everything to do with not only how you feel from day to day but also has the capability of healing a leaky gut and truly managing autoimmune conditions. This does not mean that food always takes the place of medication or of medical care. But we cannot overlook nutrition as being instrumental in our healing.

In my own story, my body could not even begin to heal until I removed inflammation-causing foods, despite the multiple medications, supplements, and other lifestyle changes. My healing has been gradual, with those expected setbacks that have made me feel as if I was failing. But over the past 2+ years of eating this way, I have finally seen glimpses of the old me. Before my body began attacking itself, before I became a shell of the person I was, and before my immune system became my own worst enemy.

I consider myself a work in progress as I truly believe that once you have a chronic ailment, you must always take extra care in respecting your body and its limitations. But I am living again. I am an active parent, a contributing citizen and am no longer just a spectator of my own life. And for that my heart will never be able to exScreen Shot 2015-08-16 at 2.56.40 PMpress the joy and gratitude to have been born once again.

ABOUT JENNIFER ROBINS: Jennifer is the voice and whole foodist behind the popular food blog Predominantly Paleo and is best selling author of the fabulous book of recipes and information called Down South Paleo: Delectable Southern Recipes Adapted for Gluten-free, Paleo Eaters
–filled with gorgeous photos of the recipes she includes. You can also visit her Facebook page Predominantly Paleo which has some really delicious recipes on it, too.

P.S. I, Janie, have her book Down South Paleo: Delectable Southern Recipes Adapted for Gluten-free, Paleo Eaters and it is fabulous.

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** Learn what Thyroid Patients before you have learned about better thyroid treatment.
**Join the STTM Facebook page for daily tips, information and inspiration.  

11 replies

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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