t3 tags

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 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.  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 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 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?

Well Charles, most any thyroid patient who decides to respond to this will tell you unequivacably 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.

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 on the lower left of the links.

*Scroll down to the June 2nd post and report your experience on the newly formulated Armour. It’s not a happy picture.

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.

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Thyroid 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.

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With the recent blog post by health writer Mary Shomon concerning Dr. Sidney Wolfe’s new 4-year term with the FDA’s Drug Safety and Risk Management Advisory Committee, there has been much brooha and fear-mongering on thyroid patient groups.

Why? Well look at it this way. This is a man of stature. He is an MD, an Adjunct Professor of Medicine, the director of Public Citizen’s health research group which promotes drug safety and public health, and editor of the newsletter Worst Pills, Best Pills, and since August of  ‘08, a member of the Drug Safety Committee.  He also has a resume a mile long.

Yet in spite of his seemingly caring activism for our health and well-being, and his immense experience and education, he is clearly and completely off-base about Armour and other desiccated thyroid prescription drugs.

For example, as as editor of the Worst Pills, Best Pills newsletter,  Wolfe declared Armour desiccated thyroid as a “Do Not Use” product because it is not adequately guaranteed to provide appropriate blood levels of thyroid hormone and reliable alternatives are available”. (Gee, funny how our experiences are completely otherwise….)

Then in the May 2003 issue (of which you have to have a paid prescription to read), he wrote an article titled  “Do Not Use! Natural or Desiccated Thyroid (ARMOUR THYROID) For Thyroid Hormone Replacement Therapy.”   In that article, the clueless Wolfe stated that he supported The American Thyroid Association’s statement “There is no evidence that desiccated thyroid, a biological preparation, has any advantage over synthetic thyroxine.” (I guess millions of us and our improved heartrate, stamina, cholesterol, depression and more…aren’t evidence?)

He then proposes that Armour is mostly prescribed for weight loss, is a niche market for the unscrupulous, and concludes with “if you are offered natural thyroid hormone replacement treatment for any reason, this is a red flag and you should get a second opinion.”   In a letter to consumers, Wolfe and Public Citizen state that that T3 is only needed from conversion and is predictably found from conversion, that the T2 and T1 also found in desiccated thyroid has essentially no activity, that desiccated thyroid is an unpredictable mixture, that is has no predictable biological activity…plus so many more complete and total inaccuracies based on “intellectual head chatter” not on observation and experience.

Thud.

Mary Shomon, in 2003, did a bang-up job trying to communicate with Wolfe, Worst Pills, Best Pills, and Public Citizen about the inaccuracies of their beliefs and statements…basically to no avail. The TRUTH is here, and in more detail in Chapters 1 and 2 in the STTM book which are enlightening those reading it all!

So we are left wondering, six years later, what his four-year appointment to this committee will mean. But let’s make a few things quite clear to contrast some of the fears going on and expressed on thyroid groups:

1) Armour is not being banned.
2) Wolfe is one of a current 9 members of this committee. Wolfe is not “the committee”.
3) Wolfe and seven others currently have voting rights. He is the only “Consumer Representative”.
4) There are still six more vacancies.
5) The committee is NOT the power. They simply make recommendations. And historically, the FDA can be slow to act on their recommendations, or doesn’t follow them at all (which is a GOOD thing when it comes to a SAFE and EFFECTIVE medication like desiccated thyroid).

So what can you do? I challenge you to follow and act on the below, which puts our energies into communication, not feeding the ego and power of a misguided man with our overtly expressed fears as if they have actually come to pass :

1) Remember 1-5 above. Armour is fully available. Keep the facts straight, and fear-mongering down.

2) STTM has a powerful and growing page of testimonies of those who switched to desiccated thyroid.  Are you in there? If not, you need to be. This website currently has a huge audience. It’s noticed by doctors all over the world, as is the STTM book, which is YOUR book of YOUR experiences,  which is also being ordered by doctors. Use the Contact Me form at the bottom of that page.

3) Tell your experience with Synthroid or other thyroxine medications at the following websites:  www.rateadrug.com,  www.drugs.com,  www.askapatient.com They don’t include any of the desiccated thyroid meds yet, but you can tell of the negative experiences with all the T4-only drugs, including adrenal fatigue if you fell into that, and all your lingering thyroid symptoms.  The above links will take you to their Synthroid page–you can search for the other T4 meds.  Remember to mention Armour or other desiccated thyroid meds and how they have helped you!! Update: thyroid patient Gina found the drugs.com Armour page: http://www.drugs.com/comments/thyroid-desiccated/armour-thyroid.html

4) Report your T4-only experience to MedWatch, the FDA’s  program for reporting problems.  You will see an Online Reporting Form to download. Don’t fail to mention which problems were removed or greatly improved when you switched to Armour, or the fact that you now have to deal with adrenal fatigue thanks to the inadequacy of T4-only treatment. You can also call 1-800-FDA-1088, but remember: your call is not to draw attention to Wolfe’s opinions! It’s to draw attention to how lousy a treatment T4 is as compared to how much better Armour has been.

5) Go to my article titled Synthroid Sucks: the Rallying Cry of Thyroid Patients vs. Clueless Doctors and comment on this article, including mentioning what Armour, Naturethroid or other desiccated thyroid did for you. Rate it as well. Both keep this article in the media and in the eyes of others.

6) Go to www.medications.com where patients ask questions and YOU can answer, mentioning YOUR experience and how much better desiccated thyroid has been. Clicking on that will take you to the Synthroid patient questions. Answer them. Be careful with links–they may not catch them at first, but will remove them if they do.  You can mention website names, tho, like Stop the Thyroid Madness.

7) Send people here to follow all these steps. Power is in numbers!

8 ) Use the following website to email or write your senators and representatives: http://www.visi.com/juan/congress/ THEY DO READ THEM. And they will remember this!  Here’s a template letter you can use:  www.stopthethyroidmadness.com/template-letter-to-your-senator-or-representive/

If you have other ideas and places to write or call, add your comment to this post. Remember,  put your power in communication! LOTS of communication.

P.S. Did you know that the American Thyroid Association, in cooperation with the American Association of Endocrinologists, together support January as “Thyroid Awareness Month”…which is supported through an unrestricted grant from Abbott Laboratories, the makers of Synthroid?? Major UGH.

And right on the heels of my post below, I want to inform everyone of a REAL LIFE HORROR STORY that is happening to Sheila Turner of the UK right now. Sheila is a thyroid patient advocate who created the UK Thyroid Patient Advocacy website here.

Sheila will tell anyone who asks that she was very ill while taking levothyroxine (125 mcgs) only therapy, being wracked with back pain so severe she was unable to get out of her armchair, bed or car after sitting/laying down for a while.  She also suffered from debilitating ‘brain fog’ and short term memory, along with the usual lingering hypothyroid symptoms while on thyroxine.

Sheila states: I couldn’t tolerate levothyroxine alone because it was found I was not converting this mainly inactive hormone to the active hormone T3.  As my muscles and tissues were not getting the T3 required, my muscles in my back were going into spasm, causing the severe pain.

She then saw a private hormone specialist who started her on natural thyroid extract (Armour Thyroid, USP) and she regained her full health! It was so profound that she started the TPA-UK in 2004 to campaign for a better diagnostic and treatment protocol within the National Health System (NHS). (UK has socialized medicine.)

Fast foward to 2009.  As I wrote about below in my Feb. 14th blog post,  the UK Royal College of Physicians along with several supporting organizations recently brought out their pathetic and narrrow-minded new guidelines on the diagnosing and treatment of primary hypothyroidism.  And lo and behold, Sheila, along with about 15 other patients on Armour via the same medical consultant,  have had their Armour removed.

Says Sheila:  He and every NHS endocrinologist has been sent a letter from the President of the Royal College of Physicians, telling them they should use thyroxine ONLY as a treatment for primary hypothyroidism and that they should not recommend or prescribe Armour Thyroid and that only accredited endocrinologists should ever recommend T3 as this was rarely indicated.

Sheila has been forced to return to the synthetic treatment of levothyroxine (100 mcgs) and to it has been added 20 mcg liothyronine (T3) split twice a day. But there’s no guarantee she will be able to stay on the T3. Additionally, don’t be fooled into thinking that a combo of synthetic T4 and synthetic T3 is as good as Armour. Patients all around the world who have tried it, then switched to Armour, report far better results with the latter.

Says Sheila in a completely shocked state:  I cannot believe this is happening - I tried to question him as to the reason all the NHS endocrinologists didn’t demand the BTA produce MEDICAL EVIDENCE to show that hypothyroid sufferers ONLY ever needed T4 - he said he knew they should have produced evidence, but it seems because it has come from the RCP, his and everybody else’s’ hands were tied - they have to be seen to be doing what they are told. I got the distinct impression that if anybody rocked the boat, they would be next doctor arraigned before the GMC.

Making this real life horror story even more shocking, her medical consultant explained that the only way to find the truth as to whether Armour was a better medication or not was through clinical trials using Armour versus levothyroxine.  (i.e. patient experience all over the world revealing it works isn’t enough evidence. Give me a break). But when she pressed him into starting this, he said they would need the backing of their thyroid association - yes, the British Thyroid Association (BTA), the very group that has said that a TSH of 10 is borderline hypo. (See my Nov. 7th post)

Sheila continues: I told him they would never agree to this, and he agreed also. I told him that we did NOT NEED the British Thyroid Association to get ethical approval - and surely he could get a group of like-minded practitioners around him and do this themselves - but it would cost a great deal of money - and, again, if you are a member of BTA (and I believe most endocrinologists are) then they daren’t do a thing without their approval.

At the moment, Sheila will tell you with sadness and shock that it all seems rather surreal at the moment. She is scared for every sufferer of this disease to be forced into taking only one thyroid hormone - a synthetic storage hormone. She is  scared for herself, too.

Sheila expounds: I just sincerely hope that I can cope with the change-over to synthetics and that Armour has made my body strong enough to do this. I will make absolutely sure that my adrenals can cope with this. I feel SO VERY sorry for all of those sufferers who are being left in the care of a head in the sand endoprat , who will refuse to even give them the correct thyroid hormone their body needs.  Once again - THE NHS IS KILLING US!

This is profoundly sickening and shocking.

If you are so moved,  send this blog post (www.stopthethyroidmadness.com/blog) to anyone and everyone.  Send it to your newspaper, your radio,  talk shows, your friends, relatives, anywhere.   This should NOT go unheard of by others. We need to tell the world about this travesty.  Speak your mind about this by adding a comment.

Update: you can read Sheila’s and UK-TPA’s response here: http://www.stopthethyroidmadness.com/uk-tpas-response-to-the-rcp/

More from Sheila that gives UK patients hope: http://www.stopthethyroidmadness.com/relationship-between-the-RCP-and-MHRA/

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Just as I was finishing up the post below about a short summary on the Endocrinology Today website, I saw a link at the bottom of the page that interested me.  It took me to a blog post on the same site from December 10th titled “Why can’t it be my thyroid?”.

And a slew of thyroid patients around the world, as well as a growing body of doctors,  would completely disagree with this post.

Namely, a DO explains the problem of patients arriving in doctors offices with “innumerable possible symptoms of hypothyroidism” including “fatigue, cold intolerance, decreased energy, weight gain, depression, hair loss, low libido, menstrual irregularity and others.”

Yet, he bemoans, these patients have a “normal TSH” which is “well within the normal laboratory reference range.” He also refers to their normal free T3 and free T4, and states there is no history to suggest pituitary dysfunction or that the TSH is unreliable.”

He then proceeds to pat himself on the back because he 1) will treat some patients with a high-normal TSH and other clinical features,  2) he will treat to a low-normal TSH of less than 2.0, but like the good-boy-doctor, “still within the normal laboratory reference range” and 3) he will not induce iatrogenic hyperthyroidism, even if symptoms persist. (yikes)

“Iatrogenic hyperthyroidism”??  Since “iatrogenesis” refers to harmful medical procedures, he’s probably referring to a TSH below the range, which in his mind, equates to hyperthyroidism.

***Then comes the observation that has made many thyroid patients shiver, since so many doctors have said it: because he feels that adding T3 to T4 has more negative results than positive, he explains to his patients “that there may be causes of their symptoms besides the thyroid.”

THUD.

So here is my 6-point response to any doctor who might share these beliefs:

1) There’s hardly a thyroid patient around who hasn’t had a so-called “normal” TSH in spite of clear and obvious hypothyroidism.  The TSH lab test frequently lags behind what is reality in the body, and has been doing so since it’s creation in the early 1970’s (see Chapter 4 in the Stop the Thyroid Madness book for history).

2) Having a “normal” free T3 and free T4 means nothing. It’s “where” the result falls in that range that means something. i.e. patients all around the world are noticing that having a free T3 mid-range or lower in the presence of hypothyroid symptoms is usually a BINGO lab result pointing to hypothyroidism.

3) Exactly because doctors tend to dismiss clear hypothyroid symptoms as “something else” thanks to a lousy TSH reference range, a burgeoning number of thyroid patients are falling into adrenal fatigue with its low cortisol, which serves to mess them up even more.

4) A huge body of thyroid patients who are on desiccated thyroid hormones (aka Armour, Naturethroid, etc), and who finally have a complete removal of symptoms with a normal temperature and heartrate, also have a suppressed TSH lab result, and not one iota of “iatrogenic hyperthyroidism.”

5) When it appears that adding T3 to T4 is having negative effects, the problem is most likely adrenal fatigue that needs correction, and/or low ferritin, NOT deciding that the symptoms must be from another cause or T3 doesn’t work.

6) “Fatigue, cold intolerance, decreased energy, weight gain, depression, hair loss, low libido, menstrual irregularity and others” may be shared in other conditions, but you are most likely missing CLEAR symptoms of hypothyroidism, both in the undiagnosed patient with a so-called normal TSH, or with a patient treated with the lousy thyroxine, which leaves most everyone with continuing hypothyroid symptoms.

“I’m sorry. It IS your thyroid” is exactly what patients need to hear.

With recent news of Oprah’s continuous weight gain (currently partially due to her failure to properly treat her hypothyroidism and probably Hashimotos (see post below this), it can make us all shudder as we deal with the holidays and all that great food!

I admit it: At Christmastime, I LOVE the easy Gingerbread Boy Cookies recipe I used when the boys were little, the Microwave Fudge recipe to die for, my world famous Chocolate Chip Meringue Cookies which I color red and green, my mother’s wonderful Pralines which I occasionally try to make myself,  and Grandma’s Fruit Cake–yeah an actual fruit cake I LOVE, which I order EVERY SINGLE YEAR at this time.

And it’s hard not to gain weight! Is that you, too?? So let’s go over 6 HOLIDAY FACTS about thyroid treatment with desiccated thyroid:

1) Armour, Naturethyroid, Westhroid, or any other desiccated thyroid medication is not meant to be a Christmas weight loss pill. Desiccated thyroid medications consist of thyroid hormones: T4, T3, T2, T1 and calcitonin. They simply give you back what your own thyroid is not giving you…the same five hormones which give you back a stronger immune system, a normal body temperature & improved metabolism, better energy, healthier hair and skin, less aches & pains, emotional happiness, better lipid profiles like cholesterol, stronger bones…and on and on.  But even with all that benefit, and even though it does improve your metabolism, desiccated thyroid is not meant to be a weight loss pill.

2) Armour et. al. can only do its holiday job if you have strong adrenals or adequate cortisol treatment. Because cortisol is needed for thyroid hormones to move from your blood to your cells, you can only benefit optimally from desiccated thyroid during the holidays if you are lucky enough to have strong adrenals, or if you are giving yourself back the cortisol you need based on stable temps, blood pressure, and removal of most low cortisol symptoms.  So don’t forget that cortisol right now, and definitely consider adding a stress dose of cortisol if things get rough with the in-laws. (See Chapter 6 in the STTM book for even more details about stable temps, blood pressure, and stress dosing)

3) Don’t drink that Armour down with Egg Nog! Calcium is a known binder of thyroid hormones in your stomach, keeping you from benefiting from some of those health-giving thyroid hormones.  So if you swallow your desiccated thyroid, get the water.  Or even better, do it sublingually.

4) Don’t expect Armour to keep you from looking like Santa Claus: you still gotta exercise & watch what you eat! It’s true: the optimal use of desiccated thyroid does raise your metabolism and eats those extra calories up like PacMan.  But if you’re like me, you can still have a tendency to put on those love handle butter pounds if you eat your fill of holiday foods.  ho ho ho. To curtail the gain, add exercise to your holiday regime, or increase what you already do. I try to aerobically walk a LOT during the holidays. And when I’ve eaten a Christmas stocking full of goodies, my next meal will be nothing but high protein, like  turkey, cheeses and nuts. Or, you can also balance your intake by choosing one meal a day to be low glycemic to somewhat balance out the high glycemics you know you are going to eat later. For example, I make my breakfasts only eggs and nitrate-free bacon, or plain yogurt with berries, nuts, and Stevia.

5) Building a holiday snowman outside?  Consider an extra 1/4 grain of Armour. It’s a fact that prolonged exposure to cold increases your demand for energy, which in turn can increase your demand for more thyroid hormones. As a result, many patients find that adding an extra 1/4 grain of desiccated thyroid to one’s daily amount helps meet the demands of Frosty the Snowman or that holiday sprinkling of lights all over your house in the cold air.  Talk to your doctor.

6) Give a gift of the STTM book to a loved one. There are other good thyroid books on the market, but unlike all of them, this is the bible of patient experience on successful thyroid treatment. You’ll find volumes of information that patients all around the world have learned. A true patient-to-patient guide to feeling wonderful again.  Go here to order.  And the publishing company is extending the time you can order a book to be sent DIRECTLY to your loved one.

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.

How many doctors can I strangle with my bare hands?? Grrrrrrrrrrr.

Today, I am once again appalled and saddened by the endless body of thyroid patients who continue to plummet into the abyss of adrenal fatigue, day after day after day. And it just never needs to happen if doctors would simply pay attention and be informed.

Belinda is the perfect example. She didn’t participate in thyroid patient groups anymore, living her life happily, because she thought her post-RAI thyroid treatment was under control, being on 2 grains of Armour for a year. But suddenly, she felt the need to return to her groups and seek feedback. Because she has become more irritable and moody, has a hard time falling asleep, and feels frequently anxietal. Labs are redone, and she finds herself with a slightly over-range free T3 and a very suppressed TSH. Her doctor decides to lower her thyroid meds, which in turn improves her insomnia and anxiety, but weight starts piling on. She’s confused and wonders how she can find her balance between being on too little with unwelcome weight gain and being on too much with uncomfortable anxiety and insomnia.

What Belinda didn’t get, and what her doctor didn’t get, is that Belinda had now joined the dubious camaraderie of those with adrenal fatigue, a needless condition of over-stressed and under-functioning adrenals. As a result, T3 in Armour starts to pool in the blood, causing anxiety, insomnia, and all sorts of low cortisol symptoms. Thyroid patients just like Belinda have to first discover what is going on, then face the complicated balancing act of treating adrenal fatigue AND hypothyroidism. And it’s a path that never needed to happen.

WHAT IS POTENTIALLY TAKING YOU DOWN THE DIRTY-YELLOW BRICK ROAD TO ADRENAL FATIGUE??

1) Being undiagnosed, or being dosed by, the faulty TSH lab test and its dubious “normal” range, which will leave you with lingering hypothyroid symptoms. (Belinda’s 2 grains tells me she was being dosed by the TSH)
2) Being treated by T4-only medications like Synthroid, Levoxyl, Eltroxin, et al, which end up teasing your adrenals to work harder to take up the slack of an inadequate treatment.
3) Lowering your expectations of what “normal” is. No, it’s not normal to have less stamina than others, to be on an anti-depressant to bandaid your hypo depression, to feel colder than others, to require frequent naps, to feel the need to avoid people, to be bothered by lights or noises, to be told by those you love that you are too defensive or over-reactive…and so on.

I hope anyone reading this comes to an understanding that you canNOT enter your doctor’s office as if you are entering the throne of a god. Your doctor, no matter how educated or dedicated, may not have a strong understanding of the role of adrenal function in relationship to bad treatment via T4-only meds or the TSH lab range. You may have to bring this knowledge to your doctor, or find another one who is either learned, or open-minded. Because your chances of having adrenal fatigue are huge if you are on T4, if the TSH is worshipped by your doctor whether on T4 or desiccated thyroid, or if you keep walking into the doctor’s office and hang your own knowledge on the hook outside his or her door.

(See Deborah’s story about ceasing to smoke with adrenal fatigue)

The topic of iodine supplementation for your overall health has been growing the past few years among patients, especially in light that many of us may be low in iodine, or just the fact that iodine has anti-cancer qualities. I became interested in the topic after reading Dr. David Derry’s book Breast Cancer and Iodine. I’ve also seen the testimony of several women with Fibrocystic Breast Disease who saw it disappear once they started iodine supplementation. Impressive!

And since thyroid hormones are primarily composed of iodine, thyroid patients are listening to and questioning the use of iodine supplementation. Yahoo Groups has an excellent iodine group now led by Stephanie, where you can ask questions and decide for yourself. Also, if you google “iodine”, you’ll find much to read.

But thyroid patient Mike Lawson came up with some very interesting facts this week about iodine in desiccated thyroid–just one more reason to consider using Armour, Naturethroid, Westhroid or other desiccated thyroid products! He figured out the below:

T3 = C15H12I3NO4 = molar mass of 650.9776
T4 = C15H11I4NO4 = molar mass of 776.87

So, each grain of Armour has 30.20325 mcg iodine. In other words, each
grain of Armour has 1/5 the RDA of iodine (150 mcg).

Very interesting facts, Mike! Sure, some thyroid patients feel they need more than what desiccated thyroid offers. But it’s a good start when so many individuals feel their own iodine levels are too low, and need help, especially those who have had to deal with thyroid or breast cancer, or have a family history of it.

Six years ago, when I got involved in thyroid patient advocacy by starting the Natural Thyroid Hormone Users group on Yahoo, I did it because I was amazed and shocked what switching to desiccated natural thyroid did for me! There I was, on the brink of applying for Social Security Disability after YEARS of misery & lack of answers, and simply changing to a different thyroid treatment completely turned my life around. I owe some of that change on what I found out on Mary Shomon’s Thyroid group in early 2002.

And it dawned on me: if desiccated thyroid with its T4, T3, T2, T1 and calcitonin did this for ME, what could it do for others?!I  A group was NEEDED with a direct focus on desiccated natural thyroid.

And over time, as NTH grew and other fine internet patient groups evolved and grew, other patients were just as amazed at what it was doing for them, as well.  This wasn’t coming across at ALL as a treatment only for “some”. It was coming across as a treatment that might just benefit quite a large body on individuals! We also learned by the seat of our collective pants about low ferritin, low cortisol, low B-12, Celiac and gluten intolerance–you name it.

From all the above came the STTM movement: a patient-to-patient compilation of all we have learned–and then the book with even more information.  The STTM movement was created because “internet groups” were NOT enough to get the word out about the efficacy of desiccated thyroid, nor were they enough to change the huge and rigid medical establishment. Change had to come from the bottom up–in other words, educate patients, who in turn can take the new information into their doctor’s offices.

But sadly, with the success of patient information about the amazing results of desiccated thyroid treatment has come veiled criticism and overblown misconceptions within our own ranks. And it’s a sad thing to behold!

Namely, we can now read a September 10th internet blog “conversation” by so-called thyroid patient advocates who imply that it is “dogma and narrow-minded” if anyone dares state there just might be a thyroid treatment which JUST MIGHT BE better for most all thyroid patients. IMAGINE the audacity!! I guess it was just as “dogmatic and narrow-minded” when it was first suggested there were better ways to deal with certain health conditions than bloodletting. I can hear it now: “To deny bloodletting is just boxing people in!” “Offering bloodletting as a choice is helping people expand.”

And contrary to the self-righteous tone, condescending misrepresentations, and veiled criticisms towards certain patient groups, this patient movement is not a one size fits all movement.  Instead, it’s a “one size JUST MIGHT BE a better alternative” than the other available alternatives, and we strongly encourage that each patient consider finding a doctor to help them give it a try.  And, if something about desiccated thyroid isn’t working, we strongly encourage patients to look at particular reasons that can underlie problems.

If you think T4 is working for you, go for it! The same goes for the use of T3 only, or synthetic T4/T3, or certain ratios of T4 and T3.  Choice is a blessing we can all respect.  Just keep an eye out for depression, rising cholesterol, less stamina than others, adrenal issues and/or a myriad of other continuing hypo symptoms that just might creep up on you as you age on these treatments.  Or, consider that we’ve seen many people on these treatments, who, when they switched to desiccated thyroid like Armour, Naturethroid, Westhroid, etc, they reported even better results. (The use of T3-only for high RT3 is a different issue and is where T3-only may be absolutely needed and good. We also respect those who have ethical issues with animal products.)

Finally, I encourage others who consider themselves thyroid patient advocates to TAKE A BIG BREATH and TAKE THE TIME to be in open-minded dialogue with all patients, including me and all of us over here, instead of openly ignoring our existence or deciding what we promote is simply narrow-minded dogma.  You might find that direct communication and kindness is a far better method to help thyroid patients instead of the underhanded veiled bashings and misrepresentations within this recent blog conversation.

Look at my blog post below and you’ll see the latest duhhh entry–i.e Endocrinologists finally reported that T3 was an effective treatment in place of T4. Finally!! Of course, patients know that desiccated thyroid is an even BETTER treatment, and that has been underscored by those that tried T3 with their T4 (without having a reverse T3 issue), then switched to desiccated thyroid like Armour, and noted they felt much better. But it’s still an announcement in the right direction.

But we now have another duhhh entry: The Journal of Clinical Endocrinology & Metabolism has reported that long-term levothyroxine replacement therapy in young adults is associated with cardiovascular abnormalities. Another finally. We as patients have already known that for years! We’ve experienced what Synthroid, Levoxyl and all other T4-only medications have done to our hearts! I watched my own mother have to have an angioplasty because of her long-term use of Synthroid…and we have NO heart disease or problems like this in our family history!

So yes, you will see the announcement that a new page is going to be created here on STTM which will highlight journal entries and medical announcements which only support what patients have been experiencing and trying to tell their doctors for a longgggg time. lol. And your contributions to this new page will be welcomed.

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The new page is here: www.stopthethyroidmadness.com/medical-research Check this page often, either to send me new research which supports what we already know, or to find meat to give your rigid doctor.

***You can order the STTM book here, which is a complete patient-to-patient book on far better thyroid treatment. It’s YOUR book!

Shock and amazement.

At the 90th annual meeting of the Endocrine Society, it was announced that T3 can be an effective substitute for T4. And…the target TSH was .5 - 1.5.

DUHHHHHHH.

But it’s GOOD news.

OK, so…

1) it’s light years behind what patients had already figured out for a longgggg time
2) it’s not as effective as being on desiccated thyroid (which has exactly what your thyroid would be giving you: T4, T3, T2, T1 and calcitonin)
3) the TSH needs be even LOWER when you are adequately treated.
4) NO THYROID TREATMENT SHOULD BE BY THE LOUSY TSH AT ALL….

….but it’s a GOOD STEP in the right direction!!

http://www.endocrinetoday.com/view.aspx?rid=28931

p.s. Maybe if some of those Endo’s would open their minds to what PATIENTS HAVE LEARNED on this site and the book, they might finally make the next great step!! TAKE THIS INFORMATION INTO YOUR DOCTOR’S OFFICE!! It’s the power YOU have to change this mess!

Have you ever had someone say something in JUST a way that it hits you between the eyes?? That’s what Diane did to me. She’s a thyroid and adrenal patient, and we were discussing the way a huge medical website still gives out backwards and harmful thyroid treatment information, telling patients to “raise their Synthroid” to counter their continuing hypothyroid symptoms (which doesn’t work), or pronouncing that because their TSH is “normal”, those symptoms are not related to hypothyroid (they are.) This huge website has kept patients sick for YEARS, and is one of the main reasons I created STTM!

And Diane said to me “Somehow the true message needs to get into the main stream.”

Boink! That just hit me squarely between the eyes! Sure, I’ve been saying the same in a different way for years–that our message needs to get out. But when Diane mentioned the “mainstream”, it hit me.

Here we are, victims of a medical scandal which has been going on for 50 years, and which has effected HUNDREDS OF MILLIONS all that time. Some of those victims are dead; and many more are still alive, with new victims happening DAILY. Yet, the “mainstream media” has never taken the time or interest to report on this. HUHHH??

Wikipedia defines the mainstream media as the section of the media specifically envisioned and designed to reach a very large audience, and that might include television, radio, newspapers and magazines. Yet, what do you see on any of those mediums? You see the regurgitation of the old-boy, Pollyanna methods of hypothyroid diagnosis and treatment–the use of the TSH and total T4, plus T4-only meds like Synthroid, Levoxyl, Levothyroxine, et al. And if there is mention of desiccated thyroid, it’s bare. YAWN.

Some pundants feel that there is a form of literary censorship going on in the main media…i.e. if it’s not sensational, forget it. Others will cite bias and manipulation by those that report, especially in the political arena.

But what I lean to believe is that there’s a monkey-see, monkey-do mentality in the media. Namely, the mainstream media lazily conforms itself to the loudest, longest or most financially-influential voice. And who’s had that voice in the thyroid treatment arena?? The money-grubbing pharmaceuticals, who thrust billions of dollars into medical schools, besides their bright-eyed reps, to eventually convince every doctor since the early 1960’s that the lousy T4-only medications (Synthroid, Levoxyl, et al), and the dubious TSH lab tests, are from God Almighty.

So, that lie keeps being repeated, ad nauseum, and the TRUTH, which comes from everyday patients all around the world, gets ignored by the mainstream media. Thus, millions out there still sit, miserable or compromised in their day-to-day lives, and on a myriad of other pills to counter the lingering symptoms…because their main contact with the world–the mainstream media–is deaf and dumb–and they have not yet found Stop the Thyroid Madness, and may not for years!

So….what can YOU do?? Contact the mainstream media. SCREAM at the mainstream media. DOG the mainstream media. I have worked hard to put YOUR truth up here and in the book. You can help by spreading that word, one by one, like the Lilliputians who moved the giant.

*To contact ABC, go here.
*To contact MSNBC, go here or email Health@MSNBC.com
*To contact CBS, go here. Use the drop down menu to click on a news program
*To contact Fox News, go here.
*To contact CNN, go here.
*The top 20 Women’s magazines are here.

Want to add more emails or website URL’s for contact? Just add a comment to this post below.

**Patients are reporting that the STTM book is even better than the website! Yeehaw! To order your copy, go to the publishing website here. There are also options to order one for your doctor, and one for Oprah!

I have a 40-something relative who I’ve been getting to know better lately. When she found out I had written the STTM book, she got a copy and read it. Her eyes were apparently wide as to what she was reading, especially the Thyroid Stimulating Hooey chapter. Turns out she has had fatigue problems for at least 14 years, right after her daughter was born. And it shows in her eyes and demeanor. But that’s not all. She’s continually gained weight all these years, even though she eats like a bird, and enough depression to warrant an anti-depressant. She was also getting worried about her cholesterol. Typical hypothyroid symptoms.

And worse (anybody identify with this?), she’s been told she is NORMAL for 14 years!!! Why? Because the TSH lab result said so. Talking about it brings her to tears.

I sent her to a MUCH better and hopeful doctor.

In 2006, the World Health Organization defined health as a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. So…if you stuck “normal” in front of that definition of health, as ignorant doctors so routinely tell us we are, it means that we have the symptoms expected of one who is in complete physical, mental and social well-being. THEN WHY DON’T WE FEEL THAT WAY?????

Yessirree, somewhere along the medical perspective timeline, the ability to pay attention to CLINICAL PRESENTATION ran right down the sewer. And with that loss has come HUNDREDS OF MILLIONS of patients worldwide with the schizophrenic diagnosis of “normal” with raging symptoms thanks to ink spots on a piece of paper called the erroneous TSH range. Exactly why this website is necessary, as is the book and YOUR demands for better treatment.

I was schizophrenically normal for over 17 years. My relative has been for 14. How about YOU?

***UPDATE: BUMPER STICKERS ARE HERE! You will also note a way to pay immediately for either bumper stickers or t-shirts, using a new, growing and SECURE site that transfers money from your bank to the STTM account on the site. This is a preferred alternative to PayPal with much less hassle. NOTE: IF YOU USE IT, you will need to use Contact Me to let me know the information on the Order Form.

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A gal suggested I also have bumper stickers in addition to the t-shirts, and I think she’s right. I have a bumper sticker on my car of Calvin peeing on a particular brand of T4 (I can’t sell those since I name the brand–lol). But it definitely catches attention! Just the other day, as we had parked our car in front of a Walgreens, a gal came up with her camera to take a photo of the bumper sticker. She laughingly explained that she works in the pharmacy and wanted to show it to the pharmacist.

And I have to wonder how MANY view that bumper sticker when I am sitting in line behind a red light, or parked somewhere. It has to create thought. And that is exactly what we ALL want–to create thought in this T4-obsessed, TSH-worshipping society.

You will see four different kinds of bumper stickers on this site before March, and I will announce them here. Three use good ole tongue-in-cheek humor. WE CAN MAKE A DIFFERENCE. YOU CAN MAKE A DIFFERENCE. Stop the thyroid madness!

For 2008, as a hypothyroid patient: I will:

1) expect that the relationship with my doctor will be a TEAM approach to my health care: not just his medical school/continuing education/experience, but also my own important knowledge and wisdom that I have gained (from reading sites like this), plus my subjective experience on my medication. My doctor does not live in my body or experience my symptoms; I do.

2) take the time to find a better doctor if my doctor refuses to respect the knowledge I have gained from reading sites like this, and/or will not listen to my subjective experience in my own body!

3) make my symptoms far more important than ink spots on a piece of paper called lab results, and will not passively allow a doctor to treat me ONLY according to those lab results.

4) give myself important supplements, including, but not limited to: selenium and zinc (helps conversion of T4 to T3), other minerals which may include magnesium, etc., plenty of B-vitamins (which are needed as I improve my thyroid function, besides supporting my adrenals), Vitamin C (also supports my adrenals) and more that I feel are suited for my needs.

5) be open to the fact that if Armour or other desiccated thyroid products don’t seem to be working, I am making one of several mistakes in my use of it, and will identify my mistakes and correct them.

Do you have others as a thyroid patient? Just respond to this post.

I have had many folks email me about their concern that Oprah is not only failing to get the message about her thyroid issue, but thyroid advocates and interviews are not sending the message about what information is needed out there…and the media has STILL not caught on to this HUGE treatment scandal of the use of T4-only meds and the TSH lab. So, by request, I have created a letter template that you can use to be part of a massive letter-writing campaign to Oprah.

Yes, I’m sure she’s very distracted by the heartsick tragedy of her Leadership Academy for Girls in South Africa, but it may also worsen her thyroid condition, as well as create a potential adrenal problem. So THIS is the TIME to make a MOUNTAIN in her mail room. Go here: www.stopthethyroidmadness.com/letter-to-oprah-winfrey/

Please note that you can also use the above template letter to email her, but if we can ALSO send REAL LIVE letters as outlined in the above page, that can make a HUGE VISUAL difference as to what we are trying to tell her.

I’m sick. I’m tired. I feel awful. I’ll go the my doc’s office for help.