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20 Ways that Hypothyroid or Hashimoto’s Patients are Gaslighted

It would make an incredible horror movie. THE PLOT: stunningly convince hundreds of millions of individuals worldwide that what isn’t a good thing, really is. That what appears to be so, isn’t. 

Or that leaves only look green because of alien filters in your eyes. That ripe apples fall because invisible evil hands pull them down. That fire doesn’t burn your skin–it’s only your imagination, so ignore the fake pain and blisters. 

That giving you only one of five thyroid hormones…a storage hormone called T4 with the name of Synthroid, Levothyroxine, Eltroxin, Oroxine, etc…is all you need to adequately treat your hypothyroid state. 

Because if those in authority say so, it must be so…right?

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The gaslighting of hypothyroid patients for decades

If you have never heard of the term “gaslighting”, it describes a form of manipulation by an individual or enterprise. The result is to cause you to doubt your own intuition, intelligence, perceptions and natural wisdom.

Here’s what gaslighting does: 

  • implies a person in authority knows what he or she is talking about or doing, over your own inner wisdom and observations.
  • makes you question your own self
  • makes you second guess what is going on and your own perceptions
  • spins a false interpretation of reality.
  • tries to put the blame on you
  • makes you feel crazy
  • is a way to benefit the person or enterprise pushing the delusion for their own aims.

20 ways that Hypothyroid or Hashimoto’s patients are gaslighted–which ones are you?

  1. Authoritatively putting you on only one of five thyroid hormones as if it’s an adequate treatment, as if relying solely on “conversion” to get T3 is all you need (Yet all along, there was a proven treatment that contains all five thyroid hormones, including some direct T3, called Natural Desiccated Thyroid. But of course, you aren’t told, or it’s efficacy is grossly misrepresented)
  2. Telling you that Synthroid or Levo etc is the gold standard of hypothyroid treatment i.e. adequate, easy to dose, reliable, then sending you off into the world (Yet for all too many, sooner or later, T4-only meds have been problematic for millions, in their own degree and kind, for over five decades, as reported by patients worldwide about themselves, relatives, friends, etc)
  3. Implying the TSH lab test, aka Thyroid Stimulating Hormone, is a reliable way to diagnose or dose by.  (The TSH is a pituitary hormone, not a thyroid hormone, with a lousy “normal” range, and with a history of lagging behind for years and thus preventing diagnosis, and more)
  4. Implying that those continued symptoms, whether at the beginning or the longer you stay on T4-only, are somehow your fault, about your life situation, or in your imagination (examples in #5, #6, #7, for example. See the best list of symptoms on the net)
  5. Telling you that you need to “eat less” or “exercise more” (as if easy weight gain is totally your fault or in your control, instead of the fault of a poor treatment with T4, or the use of the TSH)
  6. Sending you to a therapist (as if your hypothyroid-caused depression isn’t related to your T4-only treatment…when it definitely can be… or can be due to the lack of a diagnosis)
  7. Saying your afternoon fatigue is due to “being a mother” or “part of getting older” (yet we see that need for a nap go away for the majority once optimal on NDT or T3 with optimal iron and cortisol)
  8. Implying that you have “separate” conditions which now need more medications only (like rising cholesterol, higher blood pressure, depression, fibromyalgia, and more…all which can be clearly related to a poor treatment and which either go away or improve, say many patients, once they have T3 or NDT in optimal amounts)
  9. Stating that Natural Desiccated Thyroid (with all five hormones) is outdated and thus a reason to avoid it (Hmmm. Then I guess so is listening to the radio, talking to people live on the phone instead of on Facebook, or sending a real birthday card instead of an internet one…should be avoided since they are outdated.)
  10. Saying you’ll get heart or bone issues if your TSH goes below range while optimal on NDT or T3 (Patients have noted that it’s not only normal for the TSH to go that low when optimal, but they see improved bone and heart health! A low TSH on NDT is NOT the same as a low TSH with Graves disease!)
  11. Stating that it’s rare for anyone to be above 2 grains, aka one grain is 60 or 65 mg depending on brand, so your continued symptoms aren’t related (Yet there are many patients who aren’t optimal until the mid-or-upper 2’s, or in the 3-5 grain range. It’s individual where optimal falls.)
  12. Implying that continued hypo symptoms while on NDT or T3 proves they aren’t needed (There are understandable and correctible reasons.)
  13. Stating that Natural Desiccated Thyroid is not for Hashimoto’s patients (which is contrary to the majority of Hashi’s patients on NDT who have reported great gains once they get up to their optimal amount)
  14. Stating that iodine is the worst thing for every and all Hashimoto’s patients (in spite of those with Hashi’s who discovered that iodine lowered their antibodies if they used it correctly with supporting nutrients. It’s individual and each Hashi’s patient has to find out for themselves). 
  15. Saying that NDT or T3 for those over 60 is dangerous (yet many patients this age range report huge improvements from using it safely and wisely, such as starting low, building in small doses, watching labs, learning how to read labwork, etc)
  16. Implying there’s no such thing as adrenal fatigue/hypocortisolism (yet many get low cortisol, as proven by saliva testing, due to the inadequate treatment of Synthroid or Levothyroxine, and suffer from it.) 
  17. Stating that the use of hydrocortisone (Cortef) in the presence of extremely low cortisol three or more times (as proven by saliva testing) is dangerous or should be kept low (in spite of how patients have successfully learned how to use HC safely and wisely as outlined in chapter 6 of the revised STTM book)
  18. Underscoring that if you are “in range” with your lab result, you are doing great (We learned that it’s where we fall that has meaning, not just being in range.)
  19. Stating that you should not go by what is said on the internet, such as on Stop the Thyroid Madness (STTM) or the books (in spite of the fact that it’s all based on 15 years of repeated, solid, patient reports and wisdom; can include studies to back it up on several pages; has the support of many other practitioners….etc)
  20. Implying you are a “difficult patient” because you dare to state what you have learned that is contrary to what the doctor says (See Things we have learned)

So you see, the horror movie plot has been a reality for hypothyroid patients.

Like a few years ago. A couple saw the STTM book in my vehicle and struck up a conversation with me. She was on Synthroid; he was on Levoxyl–both T4. They had each been on their T4-only treatment for 12 and 14 years respectively. They felt their hypo was perfectly treated and they believe in their doctors. So the other problems they dealt with were separate: his rising cholesterol, her depression, his fatigue, and her weight gain. But of course, they felt those have nothing to do with their T4-only treated hypothyroid, as some of it was their own fault, and their doctors are right…leaves aren’t really green, invisible hands make ripe apples fall, and fire doesn’t really burn.  Gaslighting.

Sad.

  • Check out the best list of hypothyroid symptoms on the net, totally based on reported patient experiences, reliable, and not culled from other cold lists to bulk it up. They can even occur on Synthroid or Levothyroxine, report patients over the years.
  • Have you Liked the STTM Facebook page? One of the most helpful thyroid Facebook page on the internet and based on reported patient experiences and the wisdom gained. 
  • See research that can back up what patients have learned (and there is more on individual pages)

P.S. The photo is an actor portraying a zombie. It’s simply to represent a horror show.

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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I have a dream

As Susan Boyle of the UK had a dream which came true, I too wish from the deepest place in my heart that someday soon, SOMEONE from the mass media will FINALLY get smart and do a wide-reaching story for the hundreds of millions who are still on T4 meds like Sythroid, Levoxyl, Levothyroxine, Eltroxin, Oroxine…and who have depression or a myriad of other lingering symptoms of a sucky, laughable and shameful treatment.  This video inspires me today just as it did a few weeks ago.  Enjoy and dream with me. http://www.youtube.com/watch?v=bFzS0wgwyW4&annotation_id=annotation_179773&feature=iv 🙂

Janie

*Want to be informed of my blog posts? Curious what’s on my mind? Just use the Notification on the left at the bottom of the links.

*See below on how being on T4 meds can affect your liver. And below that–why I’m handing my promise ring back to Forest Pharmaceuticals.

Yes, Dr. Walsh of Australia, patients were right about T4-only therapy.

My mouth just fell open last night.

Apparently, in December of 2002, an Australian doctor named JP Walsh (Department of Endocrinology and Diabetes of Sir Charles Gairdner Hospital, Nedlands, Western Australia), and an Endocrinologist to boot, wrote an most interesting article in the journal Current Opinion in Pharmacology.

This incredibly stunning article was titled Dissatisfaction with thyroxine therapy – could the patients be right?

The abstract states:

In some patients with hypothyroidism, symptoms of ill health persist despite thyroxine treatment. It is unclear whether this arises from comorbidity or because standard thyroxine replacement is in some way inadequate for some individuals. Some patients feel better if they take a slightly excessive dose of thyroxine, but this carries a potential risk of adverse cardiac and skeletal effects. There are conflicting data on whether combined thyroxine/triiodothyronine treatment is preferable to thyroxine alone in dissatisfied patients

I am unable to read the full article, as it is required that you pay a sum I don’t have. But you definitely get the impression that this doctor was on the cusp of figuring out what we have known solidly all along.  Because Dr. Walsh, the patients WERE right, and still are.  Synthroid, Levoxyl, Eltroxin, levothyroxine and all other T4-only medications suck, and have sucked for a long, long time.  www.stopthethyroidmadness.com/t4-only-meds-dont-work and  www.stopthethyroidmadness.com/long-and-pathetic

I so hope to be able to contact Dr. Walsh.  Do you know him?  Because he and I need to have a long talk.

Janie

p.s. Thank you Gerry.