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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!™

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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.

 

69 replies

Thyroid Patients sending a big KISS to this British Doctor!

kiss2

I recently discovered a very humorous and appropo medical blog on the net, written by a United Kingdom General Practitioner who wisely stays incognito. His blog is called The Jobbing Doctor.

And his most recent and humorously brilliant post is titled Hairy legs are better than blood tests! He describes his occasional confusion when blood tests don’t agree with the patients symptoms.

Says the UK doc: “The textbooks teach that the level of circulating thyroid hormones (which are called T3 and T4) are inversely related to the Thyroid Stimulating Hormone (TSH). If your T3 and T4 are low, your TSH will be high: this suggests an underactive thyroid gland. If the T3 and T4 are high and the TSH is low, then you have an overactive thyroid gland. That’s easy, huh!”

But his confusion sprang forth when a patient’s labs showed “a highish TSH, T4, and a normal T3.” Yet apparently her symptoms didn’t imply there was any problem, so he chose to do nothing as far as changing her treatment.

A month later at her next appointment, this patient expressed her approval that he didn’t change anything…because her leg hair and eyebrows were coming back.

And his conclusion? “Pah! Who needs blood tests!”

Jobbing Doctor, you are discovering what thyroid patients have been learning over and over for years: it’s SYMPTOMS (or lack up) which need to pull the cart, NOT labwork. Sure, we love our labwork. They can give clues to areas where our bodies are screaming for help. But they definitely do NOT tell the whole story.

Look at the ignoramus TSH lab test. Countless patients have walked into their doctors offices with clear and obvious hypothyroid symptoms–and desperate for a diagnosis–yet the ink spot on the office piece of paper called the TSH lab result proclaims they are “normal”. And that dubious “normal” diagnosis can go on for years before it rises high enough to reveal what was already there by SYMPTOMS.

Or, while on thyroid medication, patients will have a lamebrain “normal” TSH lab result, yet will continue to have their own brand and degree of continuing hypothyroid symptoms which the clueless doctor dismisses as an hysteric female interpretation, motherhood, stress, a need for psychological help….or just “something else”. Uh huh.

In fact, Jobber Doctor, patients have learned that when they are optimal (on desiccated thyroid), along with optimal ferritin and cortisol), they will generally have a free T3 in the upper part of the range, and a SUPPRESSED TSH, with no symptoms of hyperthyroidism. That is general, and there can be some exceptions, but overall, it has spoken volumes to patients on how inadequate thyroid lab tests can be. i.e. being in the “normal” range—anywhere in the normal range–can be mean squat.

Thanks for a great post, UK Jobber Doc. And P.S. Desiccated thyroid is an even better treatment than thyroxine. 🙂

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

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UK celebrities with thyroid cancer or disease

clareblading1Thyroid problems have become rampant.

And it’s not just in the US with individuals like Oprah, fitness guru Jillian Michaels, Sex and the City’s Kim Cattrall, George and Barbara Bush, Kelly Osbourne and others. A recent article in the Daily Mail-UK highlights the saga of Clare Balding, the BBC TV sports presenter in the UK whose thyroid was gladly removed due to a malignant tumor.

Even the gal who wrote the well-written article about Clare, Pippa Jolly, reports having gone through the same removal 13 years previous due to an extreme case of Hashimotos and a nodule pressing against her trachea.

But within the informative and hopeful tone of the article are a few Rodney Dangerfield thuds of the continuing SCANDAL and idiocy of a particular thyroid treatment which even the most innocent of article writers can be fooled.

Thud #1: The very first sentence of the article says: Some good news for Clare Balding, the BBC TV sports presenter, is that her recent operation to remove her cancerous thyroid gland – a thyroidectomy – should be the end of the matter.

End of the matter? Only if she had been put on desiccated thyroid like Naturethroid, et al. Because it appears she’s on the delightfully enchanting synthetic “thyroxine“, the darling of most UK doctors and which serves to leave almost everyone with their own brand and intensity of continuing hypothyroid symptoms. You can listen to my audio here about T4.

Thud #2: Diagnostic rates are on the increase, says Professor Monson, as thyroid tests are now done routinely at GP surgeries. ‘As a result there is a higher detection rate and the disease can be tackled earlier and if necessary followed up by surgery.

Right. Those increasing diagnostic rates, some which are based on the lousy TSH lab test, are overridingly catching someone’s hypothyroid state years after it started, which leaves a certain percentage with the misery of adrenal insufficiency and host of other problems from being undiagnosed so long. And if one is treated after surgery based on the same holy TSH, you will only continue to have your brand of continuing symptoms. You can listen to my audio on the TSH here.

Thud #3: If the thyroid is removed or not functioning properly, thyroxine will need to be taken in drug form for life.

You and millions of others have been hoodwinked into thinking it’s thyroxine you will need the rest of your life, aka Eltroxine, Synthroid, or levothyroxine, et al. But those T4 meds force you to depend on conversion alone, a process not well done in many, and you miss out on what natural desiccated thyroid would be giving you as a much wiser treatment–exactly what your own thyroid gives: direct T4, T3, T2, T1 and calcitonin. Or even at the VERY least, giving yourself synthetic T4 with synthetic T3.

Thud #4: Now I have to have my hormone levels checked every three months and make sure I take my medication, but otherwise I feel fine.

I completely believe Pippa when she says she feels fine. But I want to warn her: some CAN feel fine on a T4-only medication, but eventually and especially as she ages, she’s going to have to watch out for those pesky little demons of being on an inferior, inadequate medication, which can include rising cholesterol, chronic low-grade depression, rising high blood pressure, or a host of other symptoms which are individual to each person on thyroxine.

Here’s hoping Clare and Pippa join the growing body of patients all over the world whose lives are being changed thanks to natural desiccated thyroid.

*Want to be informed of these blog posts? Curious what I’m ranting about now? Use the Notifications on the lower left of the links.

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