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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.

109 replies

Has Armour gone back to its pre-reformulation? And 5-HTP is pretty remarkable…

Though this page was originally written in 2012 about Armour and 5-htp, it’s been updated to the present day and time. 

It’s only a handful of comments here or there in patient groups, and I’ve gotten two emails as well. But there are reports that recent bottles of Armour desiccated thyroid have pills which are performing just like they did before the unappreciated reformulation of 2009. i.e. they are softer again and can be done sublingually, and may be back to more dextrose and less cellulose.

Said one patient who contacted me via email: “It’s interesting what I read in the thyroid group the other day that her pills were back to being soft. But typical condescending Forest Labs who never said a word in 2009 to the most informed group of patients in the world, and haven’t communicated to us directly once again if it really has changed.”

So, if it’s true, there may be a phase of figuring out what you get: the hard ones that patients found HAVE to be chewed up to be the most effective, or the return of the softer ones which could be done sublingually. I’d be curious to know which pharmacies and in which city/state are giving out Armour tablets that are softer.

UPDATE: Forest Labs, the former makers of Armour, was bought out by Activas in 2014, then the price of Armour became the highest priced NDT around. And for many, it wasn’t working like it used to. But some still do well on it, paying the highest price. Learn from this page: http://stopthethyroidmadness.com/options-for-thyroid-treatment

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5-HTP can be miraculous against depression, plus can help troubled sleep patterns

When I went into full menopause, one issue I noticed was out-of-the-blue was afternoon depression, in spite of being optimal on Natural Desiccated Thyroid.  Bottomed-out female hormones can be problematic until I can correct them. And I found something that worked to completely remove the afternoon depression with the FIRST day of use: 5-HTP.  I was shocked.

Turns out that menopause can also mean low levels of serotonin–a brain transmitter that affects your mood positively. Your over-the-counter 5-HTP supplement (which comes from the seeds of the African plant Griffonia simplicifolia) is a precursor of trytophan, the amino acid responsible for making serotonin and melatonin. And lo and behold, what do many prescription anti-depressives, such as Selective serotonin reuptake inhibitors (SSRI) meds, do?? They increase the bioavailability of serotonin! But why put up with the side-effects when 5-HTP is natural and has so few, I decided!!

How much? 100 mg did the trick for me, once a day. But others report needing 200 or 300 mg. I started on too much–had dizziness with starting on 200 mg. Found out the hard way that 100 mg was enough for the time being until I coud better treat my female hormonal issue. I’ve read where some only start on 50 mg.

For better sleep, studies have shown that 5-HTP outright will improve your sleep due to increasing melatonin. Research has reported a lengthening and deepening of their REM period of sleep–the deep sleep–and without increasing the amount of time they sleep. It also seems to smooth any ups and downs with sleeping.  Some research shows it can take several weeks, but I figure that can be individual.

There’s even anecdotal evidence that taking 5-HTP has helped drinkers avoid the bottle. i.e. if someone drinks to self-medicate against depression, 5-HTP could help.

There are definite cautions with 5-HTP! i.e. it’s NOT recommended to take it with anti-depressants or any seratonin-raising drug, as together one could raise their serotonin levels too high. A lot of different experiences with 5-HTP can be found here. As always, talk to your doctor about using it or not. It may be for only short-term use.

NOTE ABOUT DEPRESSION: For hypothyroid patients, especially those still stuck on T4-only like Synthroid, depression is pretty common due to inadequate levels of T3.  Once you get on Natural Desiccated Thyroid, as well as correct any potential low iron or low cortisol issues, you may find that depression is kicked to the wind!

As intellectually stated by Eric Fliers from the Department of Endocrinology in Amsterdam, “triiodothyronine (T3) is also capable of increasing serotonergic neurotransmission by desensitization of inhibitory 5-HT1a autoreceptors in the raphe nucleus, thus disinhibiting cortical and hippocampal serotonin release, and by increasing cortical 5-HT2 receptor sensitivity, further increasing 5-HT neurotransmission.”  

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Two newer pages on STTM as of 2012, and updated to today:

  1. Adaptogens:  read how certain plant and root substances can help you cope better with stress, here.
  2. Graves Disease: never thought I’d have a page on STTM about it, but enough patients have asked that it’s now here. Besides, since many Graves patients become hypothyroid, it’s good for them be included on a site that teaches what patients have learned about far better thyroid treatment, which is NOT T4-only.
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New to this website? Read about:
  1. Desiccated Natural Thyroid as the treatment with the best results
  2. Why T4-only meds like Synthroid aren’t doing the job for all too many
  3. How many thyroid patients fall into sluggish adrenal function aka adrenal fatigue
  4. How you can treat low cortisol without the use of HC
  5. What patients have learned
  6. Mistakes patients make in their treatment
And get the REVISED STTM BOOK for more details and ease of learning about what patients have learned.

 

 

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Saliva testing while on HC? Maybe…if your doc understands what to look for…plus more!

For years, thyroid patients have shied away from using saliva testing while on HC, concerned about the false highs and false lows of cortisol  levels that occur with exogenous use of medications like hydrocortisone (HC) i.e.  that which you give yourself externally vs the natural release. Or, there might be an issue with the HC still left in your mouth,  and the saliva results would reflect this.

But thyroid patient and author Paul Robinson, as explained in his blog post,  has recently been in touch with Dr. Henry Lindner who has found a way to use saliva with his patients on HC.  Also, to avoid the residue of HC in one’s saliva, he instructs his patients to swallow their HC quickly with water.

For example, Lindner can tell if one isn’t on enough HC by looking at the saliva result done two hours after a patient took HC.  i.e. the reading might still look “normal” when in fact, it should be much higher due to the high peak after taking HC exogenously. It would only be “normal” (or low normal) looking four hours after one takes HC, not two hours after.  Conversely, if saliva is done right before the next dose of HC is due, which is often in four hours, it should be low normal, since exogenous use of HC should result in a fall after the peak.  Thus, it can mean one’s HC dose before that was too much.

You can read Dr. Lindner’s own words on his website here. I can’t guarantee this will work for you. In fact, we don’t recommend doing it this way at all. And your doctor probably won’t understand it yet.  So in the meantime, patients have been assessing their HC use with Daily Average Temps (DATS) and it’s still viable as well. It can be a way to avoid the cost of additional saliva testing.  To understand how to do your DATS, see Discovery Step Two, number four, here.  This is also explained in the revised STTM book in Chapter 5, which also has more details.

Want to order your own saliva test? Go here. Both My Med Lab and Healthcheck USA use ZRT, and Direct Labs uses a six times a day saliva testing if you’re curious about your nighttime levels.

DID HIS WIFE COMMIT SUICIDE DUE TO THE FAILURE TO TREAT HER THYROID CORRECTLY?

In one of STTM’s Facebook groups, I saw a posting about this article, and it broke my heart.

I cannot say one way or the other about this particular case, where his young wife had Hashimotos. But in the ten years I’ve been a Thyroid Patient Activist, I’ve seen SO many thyroid patients on T4-only, or those who haven’t received a correct diagnosis due to the lousy TSH lab test, suffer from depression, whether from continued thyroid problems or the effects of adrenal fatigue and low cortisol–the latter which a large body of thyroid patients can fall into. The brain and the adrenals NEED T3, we have learned personally, over and over.

My own mother was a classic example, having endured Electric Shock Treatment in the 1960’s for her poorly-treated, thyroid-induced depression, then needing to be on an anti-depressant her entire life from being on T4-only. That anti-depressant made her emotions flat.

You can see the article here.

DO YOU HAVE TO ENDLESSLY TAKE CERTAIN VITAMINS/MINERALS TO KEEP THEM UP??

I do. For me, it’s magnesium.  It’s like my body has a “magnesium hole” and I can never seem to keep my levels optimal without supplementing daily.  And I am very optimally treated for my hypothyroidism, and use Apple Cider Vinegar daily in a large glas of flavored water for a more acidic stomach environment. For others, it’s a “B12 hole”, and they have to inject or take supplements daily. Others might have an “iron hole” and need the maintain that.

What about you? What supplements do you have to take daily to keep your levels optimal??

 

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Ten years reveal what works with thyroid treatment, plus healing adrenals without HC!

This year, 2012, marks the tenth year I started working with and learning from patients after desiccated thyroid turned my life completely around. It all began with the creation of the Yahoo group Natural Thyroid Hormone users–a still-active group. And the next few years of “patients sharing with patients” provided incredible information. 

And when it comes to the variety of thyroid med treatments, here’s a general summary of ten years of patient experience:

  1. T4-ONLY MEDS: do not work well for a large body, if at all, leaving patients with continuing hypothyroid symptoms in their own degree and kind. Those who feel they are doing well on T4 end up seeing increasing symptoms of a poor treatment…eventually (or don’t recognize their symptoms of a poor treatment). By observation, more than 50% of those on T4-only end up with screwy or debilitating adrenal function, low iron, low Vit. D and more side effects of a poor treatment. Some put on T4 (because of a transient high TSH lab test result) probably never needed any thyroid treatment in the first place, like my sister-in-law.
  2. SYNTHETIC T3 WITH SYNTHETIC T4: a definite step up from T4-only in improvement of symptoms. Unfortunately, though, we see more and more doctors prescribing this rather than breaking through their ignorance and prescribing natural desiccated thyroid with its T4/T3/T2/T1/calcitonin, because all they know about is synthetics.
  3. T3-ONLY: another good step up from T4-only. Patients note they have to be diligent in taking their multi-dosed T3, having no T4 to rely upon for conversion. Also used temporarily by those who want to lower high RT3 while correcting the causes.
  4. NATURAL DESICCATED THYROID: gives the best results, say many patients over the past ten years who tried the synthetic T4/T3 route or others, since it gives exactly what a healthy thyroid would give (T4, T3, T2, T1 and calcitonin).  There just appears to be something synergistically powerful when you give yourself exactly what your own thyroid would be giving you.  If you have issues, it’s usually due to a cortisol or iron problem, which need to be corrected. More info here.
  5. COMPOUNDED THYROID:  Be careful, say experienced patients, when your doctor prescribes this! It’s far more expensive, and the less expensive prescription pill forms of NDT work well anyway. Also, some patients have been shocked to find out that what they were taking was compounded synthetic T3 and synthetic T4. Beware, say informed patients, when your doc says “it’s specially formulated for your particular needs” (for most, this is a mute point. The prescription pills for fine.) or “time-released is good” (Not, say patients, who found it runs out far too quickly).
  6. OVER-THE-COUNTER THYROID SUPPLEMENTS:  Just a few years ago, patient experience found them to be weak substitutes for prescription desiccated thyroid meds. But the last few years saw the introduction of good OTC products which patients report have done them well! ThyroGold brought out by the late Dr. John C. Lowe is one, even if quite strong and the need to pour out the contents and divide.
Of course, there can be less common ways to use the above. For example, those with peripheral tissue resistance can be on high doses of desiccated thyroid (to get the benefits of all five hormones) along with added T3. And there are more.
READ the stories of two real people who found out the hard way that Synthroid can end up biting you in the butt later: DEANNE and GENE.

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YES VIRGINIA, YOU CAN HEAL YOUR ADRENALS WITHOUT USING HC!

And just as patient experience has revealed great information about a variety of thyroid treatments, the same patient experience is breaking ground with adrenal treatment as I write this! Namely, a small but growing body of patients have been doing the T3 CIRCADIAN PROTOCOL FOR ADRENALS, as first discovered by UK patient and author Paul Robinson, and it’s working!

And even more exciting? It’s working with natural desiccated thyroid, not just T3!

Now of course, Paul doesn’t feel that “healing” is the right word. He prefers that it’s “promoting better adrenal function”.  He’s right. But “healing” fits when one has gone from the misery of low cortisol, to the glee of better adrenal function….and achieved from just several weeks of doing the protocol correctly, as compared to a few years with the use of HC and its problematic side effects.

To read more about this exciting new discovery, go here.  You’ll also see the link to order Robinson’s book, of which Chapter 16 covers this use of T3 in promoting better adrenal function.

 

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T3 to heal adrenals, Selenium, liver–all important info for thyroid patients!

Though this post was written in 2012, it has been updated to the current day and time and it still applicable. Enjoy!

HOW T3, DOSED A CERTAIN WAY, CAN REVERSE YOUR ADRENAL FATIGUE!

UK’s Hashimoto’s patient Paul Robinson has been a successful T3-only treated patient for more than 13 years, especially because he never did well on either synthetic T4, nor on the combination of T4/T3. And he learned so much about himself that he compiled all the information on T3 dosing in his book called Recovering With T3: My Journey from Hypothyroidism to Good Health Using the T3 Thyroid Hormone.

But what I especially find interesting is how he used T3 to cure his flagging adrenal function rather than HC (hydrocortisone).  And here is a short summary of key points. He calls this The Circadian T3 Method, aka the CT3M.

  1. Most of the day’s cortisol is made in the last four hours of sleep, which means your adrenals work their hardest during that time. And like any cell in your body which need T3 to function well, so do your adrenal cells…especially during the time they work the hardest.
  2. With the above in mind, it made sense to Paul that if adrenals are struggling with low cortisol, they clearly need T3 in that early morning 4-hour window in order to function better. How did he do it?  He moved his first T3 dose to one hour before he would normally wake up, held it for a few weeks to see the results, went earlier another half hour, held it for a few weeks to see the effect…and so on. He obtained a lot of data to ascertain what was happening–urine cortisol, blood pressure, pulse, etc. He found that the time which gave his adrenals the biggest boost, and thus better function, was 3 1/2 hours before he normally wakes up.  But he feels that others might find that anywhere in the first three hours of that four hour window, and it’s important to move slowly within that area to find the right time for you based on data.
  3. This protocol needs certain supplements, which include high potency B complex, B12, Vit. C, Vit. D and a good multi mineral. He goes into detail in his book.
  4. This protocol would not work if someone has Addison’s Disease, Hypopituitary or Diabetes…and may not work if you have pre-Diabetes blood sugar issues. It’s blood sugar in the cells that reacts positively with T3.

There is much more detail than the above. And Paul makes it clear that this treatment for adrenal fatigue and proven low cortisol should only be done in your relationship with your doctor. You can read more here on STTM.

UPDATE: many patients have reported that though the CT3M did wonders bringing up the morning cortisol, it didn’t help afternoon cortisol at all, and for some, didn’t help noon’s low cortisol. Yes, there are some who feel it’s helped all day, but also a large body who said it only helped morning. So we concluded that though it’s great for that low morning, you may have to use other supports for other low cortisol times. Also, the CT3M is excellent to help get off HC! Many are off in a month or less!

SELENIUM, EVEN WITH HIGH RT3, IS A MINERAL YOU NEED!

Check out what thyroid patient Cheryl Alvey has put together about selenium. This is a masterful page!

WHY THYROID PATIENTS NEED HEALTHY LIVER FUNCTION

What happens if your liver isn’t healthy?  Transportation is less optimal, and the deiodination type 1 will change to type 3, meaning T4 will convert to excess RT3! And guess what can make your liver unhealthy? Continued hypothyroidism, which happens to all too many who are on T4-only medications, or those left undiagnosed due to the TSH. Hypothyroidism is worsened with adrenal problems, and low iron.  And liver function can become unhealthy or stressed if you eat poorly  You can read more about all this here.

In the meantime, what can one do to promote better liver function? Milk thistle is one highly recommended way by many (use Milk Thistle supps from the seeds to avoid estrogenic affect). Also look into dandelion root /leaf, Sassafras, Burdock, Goldenseal and Yellow Doc root, Red Clover and Echinacea root. Ask someone knowledgeable at your local health food store.

PATIENT YOU-TUBE STTM VIDEOS

See thyroid patient Sam Aliyev’s latest YouTube video.  If you do one about the message of STTM, let me know and I’ll post about it.

**Has STTM benefitted you?? Want to Pay It Forward? Go here.

**Come over to the STTM Facebook page and “Like” it for daily inspiration and information!

23 replies