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THYROID CANCER IS AN EASY CANCER?? Patients are appalled!

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“May your choices reflect your hopes, not your fears.” ~ Nelson Mandela

It’s not uncommon when perusing the internet to see the word “easy” associated with “thyroid cancer”, or described as “the best kind of cancer to get”… as if of all cancers, this one is somehow less difficult, less arduous, a walk in the park or a piece of cake cancer.

Nor is it uncommon for thyroid cancer patients to be told something in a similar vein by their doctors. And of course, many of those doctors will use the “one little pill” pronouncement about the treatment afterwards. Easy-peasy, lemon squeezy!!

So where is the truth? Do you have reason to be nervous about your surgery? About your cancer? Is it that easy? What will your life be like after surgery?

One side of the story

Many thyroid cancer patients do report that all went well in many ways. They caught it early enough. It didn’t spread to their lymph nodes. Some didn’t even have to use pain medications after their surgery. If some did, it was short-lived. Others moved over to Tylenol after going home. Or ice packs. Drains were removed smoothly. Recovery went smoothly. Energy returned in several weeks. And they report that the cancer remained gone.

But here’s the other side of the story which completely dispels the myth that thyroid cancer is easy or the “best” cancer to get.

1) No matter where the cancer is, the emotional reaction is the same.

Many a thyroid cancer patient will tell you about their fears, depression, aloneness or anxiety when they were told. Or the denial, anguish, anger and stress they feel. Or the numbness. Or the fears of it returning. Or the unknown.

2) No surgery is fun, and that includes thyroid removal

Who wants to endure the pre-op or the aftereffects of surgery. No matter if some do better than others, it’s not fun to be in a hospital, be put to sleep, the waking up, the drains, the recovery, the discomfort, the time away, and the cost.

3) Many thyroid cancer patients have to endure RAI treatment after surgery and the side effects

RAI stands for Radioactive Iodine Ablation, also called I-131, given in either in liquid or capsule form. Since the thyroid easily absorbs iodine, and the radiation is strong, it serves to destroy any remaining tissue or cells that might still have thyroid cancer in them.

And side effects are far from pleasant and can include isolation, stomach problems, heart palps, neck tenderness, all over achiness, changes in taste, salivary inflammation and parotitis, facial or neck redness or “sunburns”, peeling skin, fatigue, fogginess, nausea, dry eyes, irregular period or other reported problems.

Then comes the reported risks that can come later in life due to having RAI, which include “bladder, breast, central nervous system, colon and rectum, digestive tract, stomach, pancreas, kidney (and renal pelvis), lung, or melanoma of skin”. Keep in mind this is about “risk” rather than a definite outcome, but it’s not fun to consider.

You can read of one patient’s opinion and experience with RAI titled Why have million of patients been treated with RAI?

4) The fear of recurrence always lingers!

Life-long monitoring is a sure bet when one has had thyroid cancer. The itchy reminder that it “could” come back never goes away when one has to have neck examinations, certain thyroid blood tests or neck ultrasounds.

5) The “one little pill” mantra of easiness is foolhardy

That one little pill is a reference to T4-only, aka thyroxine or levothyroxine, also commonly known as Synthroid or other brand names. And reported patient experiences for all too many reveal continual problems, sooner or later.  Equally as silly, that one little pill leads to the use of many other pills to treat the symptoms of continued hypothyroidism that many report finding themselves with while on the T4-only, one little pill. Those include statins, anti-depressants, anti-anxiety or pain meds, to name a few.

The conclusion?

You are not alone. Thyroid patients know that thyroid cancer is not as “easy” as they make it sound, nor is it the “better” cancer!  We are with you! Join the group below for camaraderie, wisdom and support!

This page was brilliantly updated July, 2015 to reflect even better information. Enjoy!

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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!

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Important information about Cytomel, Dr. Skinner in the UK, and Missy Elliott

ARE YOU ON CYTOMEL? If you haven’t gotten a refill of your Cytomel lately (a synthetic T3-only medication), it’s important that you know that the former makers, King Pharmaceuticals, was bought out by Pfizer Canada, Inc last October 2010. Why is this important? Because as thyroid patient Mare found out the hard way recently, your local pharmacy may think it’s not made anymore, and scare the pants off of you by saying so.

In reality, your local pharmacy needs to contact Pfizer Canada about getting re-stocked.  Says Mare, “The pharmacy’s inaccurate data caused me a great deal of angst this weekend as I was now totally out of the only thing (Cytomel) that’s even remotely made a bit of difference and now they were telling me I couldn’t get it anymore (do we patients always have to do everything ourselves??!!!)”

***Have you had any problems filling your T3? Comment on this blog post and tell us your experience.

WHY WOULD ANYONE BE ON T3-ONLY?? Did you know that if you have too high or too low cortisol levels, and/or low ferritin/low iron, there’s a good chance you may need to be on T3-only for awhile?  Yes, when you have ongoing chronic issues as a thyroid patient, your body will respond by converting the T4 you have to excess Reverse T3.  And excess RT3 will hog-and-clog the very cell receptors that would be receiving T3. Thus, you become hypo all over again.  You can read more about it here. But if you want even more good detail about T3, how this active thyroid hormone helps you,  the causes of RT3, and how to dose T3-only meds, get the Revised STTM book. It’s VERY worth it.

***What brands of T3 you have tried,  what works for you, and what hasn’t worked as well?? Comment on this blog post.

THE CONTINUING SAGA OF DR. SKINNER IN THE UK: If you aren’t aware of the incredibly shocking story of beloved Dr. Gordon Skinner in the UK—a man who dared to prescribe thyroid treatment in lieu of a “normal” TSH lab result (which is a lab test that informed thyroid patient worldwide know is completely bogus)—you can read my 2006 blog post about him here, followed by the 2007 post here.  Also, Sheila of TPA-UK gives detailed information here.

And everyone should know that his General Medical Council (GMC) hearing is coming up:  July 28th and 29th, plus August 1st, 2nd and 3rd.  This is to assess whether further action is needed after his 3 years of conditional practice are now up (as of late last year).  Says a strong supporter of Dr. Skinner (and there are MANY): “Please  let people know that their support is extremely valuable. Dr Skinner has asked for the hearing to be public and the GMC should accommodate everyone.”

***Are you in the UK? Keep us informed by commenting below.

HIP HOP MISSY ELLIOTT HAD RAI FOR HER GRAVES DISEASE: How many informed thyroid patients groan when they hear news like this concerning the use of RAI (radioactive iodine)! Thyroid patients worldwide bemoan the use of Radioactive Iodine treatment because of its potential for immense side effects. And all over the net, we read that’s just what was done to Missy Elliott in her battle with Graves disease aka hyperthyroidism.  See the People Magazine article here.

Says the Atomic Women website:

Rheumatoid arthritis is also an autoimmune disease. But, fortunately, limbs are not being amputated nor radiated.

Diabetes mellitus is also an autoimmune disease. And, fortunately, the pancreas is not being removed or radiated.

What is the point of irradiating and killing thyroid glands, which are fundamental for life?

We, as thyroid patients worldwide, wish the best for Missy. And we hope that if she is like many who eventually become hypothyroid, she will discover and learn from Stop the Thyroid Madness!

***What was your experience with RAI? Post side effects? Let us know by commenting on this blog post!

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The Agonies of Being Thyroidless–4 reasons it sucks

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(Though this was originally written in 2009 about having a thyroidectomy or being thyroidless, it has been updated to the present day and time and fits no matter what year this is being read.)

There was a time when I thought being hypothyroid without a thyroid was really no different than being hypothyroid with one.  Hypo is hypo, and we are both dependent on treatment.

But I was wrong.

There really is a difference in our journeys–even if we both end up with hypothyroidism. Here are four strong reasons it’s not fun being without a thyroid:

1) It’s no picnic to lose one’s thyroid

It starts even before surgery with a biopsy to detect if one has thyroid cancer–not always a comfortable procedure. Then with surgical removal comes the inconvenient stay at a hospital, post-surgical neck discomfort, potential loss of one’s voice or hoarseness and/or other complications, including the loss of one’s parathyroids (this doesn’t happen to everyone).  Treatment with RAI, or Iodine 1-131 to kill the thyroid, has its own risk of lifelong side effects, including gastrointestinal issues, parotid salivary gland problems, and more potential risks.  Again, this doesn’t happen to everyone, but the thought can be stressful. Read one patient’s opinion about RAI.

2) The stress of surgery and/or RAI can do a number on one’s adrenals

By repeated observation, there seem to be a high percentage of those who had surgery and/or RAI who also end up with adrenal fatigue/low cortisol with its nightmarish side effects. Or, if someone doesn’t get low cortisol from the surgery, a high percentage get it simply from the typical post-treatment with Synthroid or Levothyroxine–forcing one to rely on conversion alone. Being on T4-only is the number one predictor of having overly stressed adrenals, patients have observed and experienced. See the last chapter in the STTM II book by Lena Edwards, MD, which explains reasons why our adrenals can head south.

3) Some have a unique anguish about their new vulnerability

No one can live without a thyroid. And that thought, along with the absolute lifelong dependency on thyroid meds, is not a comfortable state to be in, say many who had to have their thyroid removed. Granted, those with a low-functioning thyroid for any reason (active genetic mutations, hashimoto’s damage or any other cause for damage have that life-long dependency as well. But those without their thyroid feel especially vulnerable.

4) Life long regret of an unneeded surgery can be huge

Many patients came to realize, after removal, that they may not have needed the removal at all. For example, some patients have reported that their thyroid was removed simply from having  Hashimoto’s disease (which could have been treated without removal). Some had their thyroid removed simply from “cancer possibilities”, yet they never had cancer at all.

Please know you aren’t alone if you are living without a thyroid. 

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

 

 

NOTE; If you have a short story to tell about being thyroidless, use the Contact form below to let Janie know you have a story. We’ll link to it on this page. 

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** Learn why Synthroid or Levothyroxine is the worst way to treat your hypothyroidism.

** See all your options for a MUCH better thyroid treatment.

** LEARN from the STTM books–it’s IMPORTANT for you to be informed. 

** Have you Liked the STTM Facebook page? It’s a great way to receive daily inspiration or information!

** Check out all the STTM information pertaining to thyroid cancer, right here. 

 

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The intrusion of reality about levothyroxine, Synthroid, T4 and depression

 

STTM Depression and T4-only(This post was updated to the present day and time. Enjoy!)

I’ve been perusing comments in response to the UK’s Royal College of Physicians blundering and dark-age-constructed Diagnosis and Treatment of Primary Hypothyroidism.  And though all comments are quite good and worth your read, I was struck by the comment titled May Reality Intrude? by a man named Charles.

Charles profound story about his wife’s depression

Charles explains that in 1999, his 67-year-old wife had RAI (radioactive iodine) and was then put on levothyroxine, a T4-only medication (aka Synthroid, Levoxyl, Eltroxin, Oroxine, levothyroxine, et al).  And not long after, she complained of having depression.

He had an idea why after reading the New England Journal of Medicine about T3, and proceeded to buy her Armour off the internet.  For those reading this, Armour is one of several brands of Natural Desiccated Thyroid–the latter which contains all five hormones that a healthy thyroid produces: T4, T3, T2, T1 and calcitonin.

Without her knowing, he switched medications. Lo and behold, he states “she promptly returned to her usual sunny disposition”. Her physician knew nothing of the switch either, and found nothing to be concerned about in her.

Charles then explained how, at age 74 in 2007, she was near death thanks to an ulcer bleed.  And to continue treating her hypothyroidism, the hospital gave her levothyroxine, aka T4-only, all over again.  Back came her depression and a feeling of wanting to go home and die.

So Charles brought her Armour to the hospital, and though her physical state was depressing enough, her sunny disposition returned.  And that happy spirit while still on Armour continues today after a full recovery.

And Charles pondered: If his wife had been in a NHS (National Health Service) hospital under the care of a so-called thyroid specialist of the NHS, would she have failed to obtain T3 in her treatment and instead, sent to a psychiatrist as if her depression had nothing to do with her levothyroxine treated hypothyroidism–the very treatment that the Royal College of Physicians has a dogmatic love affair with?

He then concludes: My wife’s depression was obvious. Since she is equipped with much the same assortment of body parts and associated physiology as others, is it not likely that many levothyroxine-treated patients suffer from less-noticeable depression?

Our experiences as thyroid patients agree with Charles!

Well Charles, most any thyroid patient who decides to respond to this will tell you unequivocally YES, YES, YES.  Because there’s no research, study or directive that is more profound and telling than the actual EXPERIENCE of patients all over the world with T4 treatment and depression…besides a slew of other side effects of continuing hypothyroidism on T4-only meds.

Why have so many experienced depression on T4-only?

Because we’ve learned repeatedly that the body is not meant to live for T4 alone, which is simply a storage hormone, not to live for conversion alone. T4 is meant to convert to the active hormone T3. Studies reveal that T3 influences the effect of the transmitters serotonin and catecholamine in the brain–both which effect mood. Without enough T3, an imbalance in serotonin seems to occur. So when one is forced to live for conversion alone, the body doesn’t appear to get enough of the powerful T3. Depression is just one of many side effects of a poor treatment with T4-only.

Go here to read several stories of patients whose depression went away with the right thyroid treatment.

* Did you have depression on a T4 med? Tell us about your experience in the Comments section of this post.

* Want to be informed of these blogs? Curious what’s on Janie’s mind? Use the Notifications at the bottom of this page. 

* Join the STTM Facebook page for daily information, tips and inspiration, and sometimes a few chuckles. 

 

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