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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

Being in the “normal” range has nothing to do with it, plus three adrenal videos to see

Note: though this page was originally written in 2012, it has been updated to the current date and time. Enjoy!

The famous psychiatrist Carl Jung used to say “To be normal is the ideal aim of the unsuccessful”. 

And nothing is ever so unsuccessful when it comes to thinking that a lab result within the so-called “normal” range is ideal.

It’s not.

And unfortunately, when I do phone coaching sessions with thyroid patients, or watch comments made in discussion groups, I hear or see all too many say “My doctor/Nurse Practitioner/Physician’s Assistant/Naturopath says I’m normal”.

And I have to immediately back the conversation up and say “Can you share that lab result and range with me?”

Because as patients have learned:  “Optimal” and “problem-free” has nothing to do with just being anywhere is a range.  It has to do with “where” in the range one’s result is.  

B12:  This may not be true for all international ranges, but when it definitely came to the US range or those similarly broad, we found out that ‘mid-range’ still produces symptoms of low B12, and we can confuse them with hypothyroidism, including fatigue and pain.  We look for our result to be in the upper quarter, if not near the top.  Because there, we found out, is where our symptoms related to low B12 abated.

Vitamin D:  Several leaders and I had a private discussion about all the conflicting information on the net as what an ideal Vit. D result was. We decided to follow the Vitamin D Council, which states that 60-80 is the goal.  I then add that progressive doctors like to see 80-100, which can especially be cancer-protective.

Cortisol Saliva Results:  When you look at the results of someone with no symptoms of an adrenal problem, here’s what you note: 8 am, at the top of the range; Noon, about a quarter from the top; Afternoon, mid-range; Bedtime, at the very bottom.

Iron: Of the four labs we generally like to see as thyroid patients, we note that a good Serum iron level is closer to 110 (with men being higher and in the upper 130’s or 140’s); a good % Saturation is close to 35% for women and 40-45% for men; a good Ferritin will end up being 70-90 (though this can come last as one improves the others), and a good TIBC, if the range is 250 – 450, ends up being in the low 300’s, we noted, when the others are where they should be.

To read more about what patients have learned about lab results, go to the LAB VALUES page. Learn to understand your own lab results!! 

Three good videos about better adrenal function

I often feel I can’t rave enough about what Paul Robinson of the UK revealed to us about promoting better adrenal function without the use of adrenal meds. It’s a quite unique method of using T3-only (or natural desiccated thyroid) in the early morning hours when the adrenals need it the most. You can see several testimonies—some with more updates coming—on the STTM T3 Circadian page here: //www.stopthethyroidmadness.com/t3-circadian-method.

Has everyone succeeded with the CT3M? No, say some. It wasn’t enough to raise their low afternoon, but definitely helped their low morning!! Others absolutely love it. So it’s up to you.

Granted, if you have Addisons, hypopituitary, or untreated diabetes or blood sugar issues, and saliva reveals quite low cortisol, you may still need HC or adrenal cortex. Chapter 6 in the revised STTM book is your go-to chapter. But for some, this is a very workable solution.

Robinson has created three videos to explain it all, which he also links to from his recent blog:

Part 1: http://www.youtube.com/watch?v=97SOyEYwh54 

Part 2: http://www.youtube.com/watch?v=7t2wg9rr6F4

Part 3: http://www.youtube.com/watch?v=dhkhcLPGCww

If your doctor prescribes synthetic T4 with synthetic T3

Progress appears to be one step at a time. And we are seeing more and more doctors prescribing T3 to their patients on T4. That’s good!! Doctors are FAMILIAR with the synthetics. So that’s what they will prescribe!

But many, many patients who have tried both synthetics, and who have tried natural desiccated thyroid, report even better results with the latter. So THIS IS WHERE YOU COME IN. Teach your doctor!! Why just be on synthetic T4 and synthetic T3 when you might do even better with all five hormones from desiccated thyroid—i.e. the same five your own thyroid would be giving you! Consider sending the Revised STTM book to your doctor: //www.laughinggrapepublishing.com/ Or, there’s a STTM II book totally written by physicians (his colleagues) and one chapter is specifically about NDT: https://laughinggrapepublishing.com/stop-thyroid-madness-ii-book/

JanieSignature SEIZE THE WISDOM

 

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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!

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Dr. Skinner has been exonerated! Plus how to survive stress with adrenal fatigue!

IMPRESSIVE GOOD THYROID NEWS!  

After a grueling week by the United Kingdom’s General Medical Council (GMC) , it was decided that the UK’s most renowned thyroid practitioner, Dr. Gordon P. Skinner, should have all his restrictions lifted and his Fitness to Practice restored!

On November 11th, 2007, the GMC had decided that the beloved Dr Gordon Skinner was not fit to practice, simply because in 2005, he dared to listen to and dose by a patient’s clinically-presented thyroid symptoms rather than her TSH labwork–the latter which fell in the erroneous normal range.  Even more dastardly, felt the GMC, Skinner was going to treat the patient without a referral letter from her GP, and may have failed to contact the GP. Heaven Forbid!!

Says a recent statement from TPA-UK:

The GMC have agreed that Dr Skinner was not acting dangerously in initiating treatment with thyroid hormone replacement for those patients who had normal thyroid function tests but who suffered several symptoms and signs of hypothyroidism. They also agreed that for those patients who did not do well on levothyroxine-only therapy, the use of natural desiccated thyroid extract (i.e. Armour Thyroid) was a safe and effective thyroid hormone replacement that doctors could prescribe, even though it remains unlicensed. This is a precedent – and one that the British Thyroid Association are most definitely very unlikely to be happy with.

There’s something huge to learn from this!  It’s called PATIENT POWER, my thyroid friends, and what we must always practice in our fight to get far better treatment. Namely, what impressed the staff of the GMC was the sheer volume of the general public who attended the hearings in support of Dr. Skinner.  Additionally, there was a nicely bound volume of over 2000 patient citations in support of him.

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SURVIVING STRESSFUL EVENTS EVEN WITH ADRENAL FATIGUE

Having adrenal fatigue with its low cortisol can be a challenge, even while you are on Hydrocortisone for your treatment (HC). So thyroid and adrenal fatigue patient Robin had to learn the hard way how to do something very stressful and still survive, adrenally. After moving to a new house, she created these excellent tips for dealing with any stressful event and preventing an adrenal meltdown:

  1. REST REST REST as much as you possibly can! Just sit and stop moving, give yourself permission to stop “doing” and just BE! Let others do the work.
  2. Don’t be afraid to stress dose with your HC!  Remember that a healthy person’s adrenals can provide over 100mg per day when in very stressful circumstances! Of course this is not healthy long-term, but we do what we have to do to survive!
  3. Remember that if you stress dose, you’ll need to start a tapering down by 2.5 mg, holding for several days, then taking off another 2.5, etc until you work back down to your “regular” daily dose–the one that gave you stable Daily Average Temps.
  4. SALT! Drink lots of salt water (or juice–I prefer my salt in watered-down juice or other flavored drinks), salt your food heavily, and even eat lots of salty olives, if you like them! The adrenals thrive in salt, and this can also be important if your aldosterone levels are also sluggish.
  5. Eat lots of protein and fat and try to keep the carbs as low as you can!
  6. Give yourself permission to be a hermit for a while. People can wait for you to return their calls. Just enjoy some quiet and solitude for a while.
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PAYING FORWARD WHAT STTM HAS GIVEN YOU!

Janie began a contract with a top-notch publicist to help get the word out to millions about the problems with T4-only, or for those remaining undiagnosed or undertreated due to the TSH lab test (similar to what Dr. Skinner above tried to avoid for one of his patients). She already has interviews scheduled and more gigs are coming.

But this contract won’t last long–it’s just too expensive for Janie alone. So your help is needed to reach more people, and soon.

Go here and read all about it.

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8 replies