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10 reasons many thyroid patients are still frustrated, angry, and sick

 

Screen Shot 2015-06-12 at 1.21.49 PMUpdated in 2015:

It’s a continuing travesty, and you see it in patient groups.

i.e. many patients still find themselves sick and disabled, stumbling miserably from one uninformed doctor to another…in spite of the wonders of natural desiccated thyroid, the testimony of changed lives, the education of patients thanks to the STTM website & book, and a small but growing body of wise doctors who seem to be “getting it”,

So what’s the problem?? It lays with our doctors and the entire medical profession.

  1. Heavy-handed control over your medication:

    You go to pick up your prescription, and find your medication has been lowered by your doctor without your agreement or knowledge, as happened to Terry here (scroll down to find her post).

  2. Ignorance about adrenal insufficiency and treatment:

    You clearly have an adrenal problem, and one doctor dismisses its existence, another doctor poo-poos the saliva test, another doctor tells you cortisol supplementation is dangerous, another doctor thrusts all his herbal supplements at you, another doctor thinks that 5 or 10 mg cortisol is enough…and on and on and on.

  3. Thinking that falling in the range is optimal:

    If a lab result within those numerical boundaries, which are based on a set of people a laboratory picked to come up with the range, says I’m normal, WHY do I still have issues??

  4. Dismissing you:

    You are wise thanks to reading, researching and living in your own body, yet your doctor calls you a problematic patient on your charts, dismisses you, or gets angry.

  5. RT3 huh?

    You have strong suspicions that your Reverse T3 is too high thanks to low cortisol or low iron or Lyme or undiagnosed gluten issues, etc, yet this doctor refuses to test you, that doctor says an RT3 excess is rare.

  6. Look at me! Look at me!

    You make an appointment with that great doc who has a fabulous website/book and who shouts that he uses desiccated thyroid with a big smile…yet some or all of the above and below occurs with him/her or his “trained” associates.

  7. Continued worship of the TSH lab test:

    Too many doctors still think the TSH lab test is from God Almighty. So when you finally start to feel well on desiccated thyroid with a TSH at zero or below…WHAM…you must lower your meds because you are somehow “hyper” in spite of no symptoms to match whatsoever and improvement in our bone density and heart health.

  8. Pharmaceutical addicts:

    You mention your lingering hypothyroid symptoms, and you are bandaided with anti-depressants, anti-anxietal meds, statins, BP pills, pain tablets, acid reflux pills, calcium for your thinning bones…instead of understanding from your doctor that these are ALL side effects of poor thyroid treatment.

  9. The country you live in:

    The desperation of UK thyroid patients is deep thanks to a thyroid association and a College of Physicians which tightens the screws if a doctor dares to prescribe a life changing medication with T3 in it.  Or just as frustrating, having a government which forbids desiccated thyroid to arrive to you in the mail, or like Denmark, refuses to dispense it.

  10. Reformulations and Big Pharma apathy:

    In 2009, then Forest Labs turned one of the most popular and effective desiccated thyroid brand, Armour, into a pill with too much cellulose and too little sucrose, causing a massive return of symptoms in many.  RLC also reformulated their Naturethroid to some degree, and though some patients still do well on it, others did not anymore. Erfa made some kind of change in 2014 which they denied, yet certain patients all over the world reported new problems they had never had before. You are left wondering WHAT is going to happen next!!

And there are more reasons you might want to bring up in the Comments part of this post.

So you see, it’s no wonder so MANY patients feel forced to self-treat, yet they are also condemned for doing so.

All-in-all, we still have a way to go, baby, and especially with the doctors we try so hard to get help from…but can’t.

P.S. Are you brave? Walk into your doctor’s office with the STTM shirt. And here’s how to find a potentially better doc. 

 

28 replies

Sock it to ’em, Sheila of TPA-UK! She has asked some STRONG questions!

(Side note: I feel so stupid. If you have signed up to receive notification of STTM’s blog posts (see signup on left below links), I have inadvertently failed to check a particular box for the emails to go out. I won’t make that mistake again. See the two posts below, which you weren’t notified about when they came out. )

I recently chatted with Sheila Turner, a thyroid patient advocate in the UK who runs the website Thyroid Patient Advocacy–United Kingdom.

And she has become absolutely disgusted at what is happening in the UK–disgusted enough to stop being polite and to ask direct and pointed questions on the home page of her TPA-UK website.

What spurred her tough new stand?  Says Sheila, “The RCP (Royal College of Physicians), BTA (British Thyroid Association) et al are doing everything they can to boycott all T3 containing products and their latest ‘Statement’ on the diagnosis and management of primary hypothyroidism is banning general practitioners from prescribing T3 at all.“.

And, explains Sheila, it’s gotten to the point where most any General Practitioner is completely afraid to prescribe T3 or any T3-containing product like natural desiccated thyroid for fear of being reported. “The ONLY people allowed to recommend that T3 be prescribed are “accredited endocrinologists”, says Sheila. (And how many patients have experienced how close minded Endo’s can be towards desiccated thyroid.)

And here are her brilliant, in-your-face questions with links, which are pertinent for ALL of us, whether in the UK or not:

  1. WHY do the GMC, the RCP, the BTA et al. deliberately choose to ignore the scientific evidence that has been available for over 40 years ?
  2. WHY are medical associations ignoring the 13% failure rate of T4-only therapy for the past 50 years? Why are patient’s complaints dismissed?
  3. WHY has there been no correction to the RCP statement when there are patients who are counterexamples to the validity of T4-only therapy?
  4. WHY is the confusion of two definitions for ‘hypothyroidism allowed to continue?
  5. WHY are guideline authorship and concise guidance to good practice protocols ignored?
  6. WHY are individual symptoms of hypothyroidism stated to be “non-specific” when Baisier found groups of these symptoms may be quite specific?
  7. WHAT further investigations for non-thyroidal causes are recommended as relevant to the symptoms of hypothyroidism when pituitary and thyroid GLAND function tests are biochemically normal — Levels of fT3, rT3 and adrenal levels?
  8. WHY are the studies by Das (2007) and Lewis (2008), which found that patients could be successfully treated with thyroid extract being ignored?
  9. WHY is medicine ignoring false negative test results?
  10. WHY do doctors refuse to explain and/or justify their decisions, thereby withholding information necessary for valid consent to treatment?
  11. WHY does the NHS refuse to take steps to protect human rights when sufferers are put at risk through a disregard of the demand that patients should be treated with fairness, respect, equality, dignity and autonomy?
  12. WHY are laboratory discrepancies in serum testing being ignored?

I appreciate the tough stand Sheila is taking. We HAVE to take a strong stand in light of the worldwide ignorance about 60 years of patient suffering on T4 meds like Synthroid, Eltroxin et al, about better treatment with natural desiccated thyroid and T3 products, and about the lousy TSH lab test!

In fact, in light of practically NO mass media attention to this huge worldwide thyroid treatment scandal, we have to shout it wherever we can and hope that some WISE reporter or media personality gets this and will shine a media light at the idiocy going on out there towards thyroid patients. Stop the Thyroid Madness!â„¢

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Gee golly bazooka: guess who started a conversation with me?

SumoWrestlersYesterday, I was meandering through a small biking/river runners store, exchanging a vest I got my son for Christmas that turned out to be too large, and looking intently for a replacement gift he’d like.

The only other shopper left—a tall, dark and handsome young man. And almost as quickly, he re-entered,  approached me, and asked if that was my car out there.

“My car?” I replied. “Yes, why?”

“I’m curious about the sticker you have on your back window,” he stated with a friendly but curious smile.

The sticker is of Calvin peeing on the word of a particular T4-only medication.  I give these away free if someone requests it with their current order of the STTM book.  And this was not the first time I’ve been asked about that attention-getting sticker.

So I proceeded to tell him that I’m a Thyroid Patient Activist, owner of Stop the Thyroid Madness, about the history of T4, how lousy many patients have reported doing on it for nearly 60 years with their own variety and intensity of lingering hypo symptoms, and how much better natural desiccated thyroid has been for patients all over the world.

I then innocently asked: “Are you on Synthroid?” I just knew I had one more victim of this treatment who needed enlightenment.

“Nope”,  he said with a confident and defiant air.  “I have until recently been a pharmaceutical rep with Abbott Labs.”

THWACK.   Standing before me stood a mighty well-trained Big Pharma champion for Synthroid who was going to reveal and defend his propaganda like a master. And that led to the most heated and piercing give-and-take I’ve ever experienced, right in front of the chagrined and wide-eyed sales person at the checkout desk. We were like sumo wrestlers butting our words against each other.

When I explained the slew of continuing symptoms reported by patients worldwide who have been on T4, and no matter how high they raised it…his response?  “Those symptoms can be the result of many issues other than hypothyroidism.”

I responded: “Well isn’t it odd that those who are hypo and on Synthroid, and who get on desiccated thyroid, find those symptoms completely removed.”

His reply?? “Heroin can do the same thing”.  Groan. I simply had to laugh at him. How many times have we heard the same kind of baloney.

He proceeded to tell me in great detail with each point he made that:

  1. He has worked with many patients and they do well on Synthroid (A rep has worked with many patients? And what in the world does “well” mean?)
  2. Clinical trials have proven that Synthroid works. (Ah! You mean those financed by Abbott Labs and which are contrary to the reported experience of millions of patients around the world? Those??)
  3. The TSH lab test gives proof about the efficacy of T4 (Funny how patients all over the world have proven by their continuing symptoms that the TSH lab test for the diagnosis and treatment of hypothyroidism belongs at the bottom of a trash heap)
  4. There are many differences in the efficacy of T4 brands to explain any issues in patients (Funny how not ONE brand of T4 has been exempt from leaving continuing symptoms according to the global rexperience of a huge body of patients) 
  5. Blaming T4 for the amount of adrenal fatigue that “supposedly” some T4-treated patients find themselves with is silly since there can be other reasons for it. (Another laugh on my part.  Clearly, when someone isn’t adequately treated on T4, something has to kick in to keep them going, and voila–it’s those trusty dusty adrenals which eventually just poop out thanks to T4 and the TSH.)

There were much more machine gun stances between us, but that would make this blog post far too long.

One truth we did agree on? That “some” patients do get benefit from using T4. He specifically referred to the elderly. And my quick response? Why accept “some” when patients all over the world report getting rid of that “some” with desiccated thyroid (and especially for certain ones who also treat their low cortisol, low ferritin, and other issues most likely related to an inferior treatment.)

Clearly, we were each deadlocked in our positions.  And he concluded, looking at the sales associate, that neither of us were wrong; we just represented two sides.

And I turned my head, looked him straight in the eye, and said:  Uhhh, no. YOU are completely and totally wrong.

P.S. After he left, the sales gal said she was totally in tune with what I was saying, and wrote down the name of this website. lol lol

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See the blog post below about favored Canadian pharmacies, plus many more comments by patients.

What the heck is going on with desiccated thyroid and current shortages? Read about it here.

28 replies

The Agonies of Being Thyroidless–4 reasons it sucks

Screen Shot 2016-01-12 at 9.34.29 AM

(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. 

 

175 replies

The unsung heroes of this thyroid patient movement

shakinghands1Let me tell you, there are a LOT of individuals–those I know and those I don’t–who give their blood, sweat and tears to help thyroid patients with feedback and information to help them feel better in their treatment, and with no notoriety that I or a few others get.   i.e they do what they do without a huge or far-reaching website like STTM, or a well-known blog, or a popular book, or other ways a few of us get well-known.

And in my mind, these individuals deserve praise and recognition. They are just as important in their direct one-on-one influence and helpfulness as those of us who gained public recognition.

There are many who voluntarily helped others in the last few years who aren’t as active anymore, but still deserve praise.

And there are many other individuals who own, moderate, or give helpful feedback to patients on forums and yahoo groups I could mention, but I don’t know their names or am just drawing a distracted holiday blank.  I also noticed several thyroid cancer groups.

So, if you want to recognize an individual who has helped you and others but is less publicly well known, use the Comments below and give 1) their name, 2) what group or forum if applicable, and 3) specifically how they helped you on your path in finding a much better thyroid treatment protocol and good health.

12 replies