I think back about my mother.

At age twenty-one in 1939, she had most of her thyroid removed due to Graves disease and hyperthyroidism. Because a small part remained, hyper set in once again by 1960 complete with bugged eyes. So Radioactive Iodine I-131 was the next step to once-and-for-all annihilate the thyroid.  Not long after, as her thyroid hormone levels fell, she was one of the early victims of the “new and modern” T4-only medication called Synthroid.

And all hell broke loose. Depression enveloped her everyday life—one of her worst lingering symptoms of hypothyroidism due to the shoddy treatment of a T4-only med as well as the TSH lab test.  I remember her moods, her frequent anger and lack of patience, and her constant counseling appointments.

By 1963, and right before President Kennedy was shot, she submitted herself to Electric Shock Treatment in a futile effort to control her depression.  What a crock.  She was never again the bright and quick-witted woman I remembered as a younger child. Her brain was fried and she had a new dull flat reaction to life. And for the rest of her life, she lived on her antidepressant/anti-anxiety med Elavil and had daily constant naps, weight gain, rising cholesterol, dry hair, heart surgery, stiff joints, brain fog and inability to stand on her feet long–her own manifestation of lingering symptoms while on the lousy thyroxine.

And she did the T4-horror show…all…by…herself. No internet,  no patient groups and forums, no Stop the Thyroid Madness website, blog or book,  no good doc, no thyroid Facebook or Twitter groups, no other good thyroid books or websites. Nada. I came along as a Thyroid Patient Activist too late for my mother, who died in 2003.

It makes me shudder thinking of that lonely hell. But then again, it’s not just in the far past: it happened to her only daughter, me, for nearly 20 years. Complete lonely hell of my own with intense and disabling Dysautonomia induced by my continued hypo state while on Synthroid and later Levoxyl.

And today, because the mass media or any media personality refuses to speak the truth of the 55 year scandal of T4-only meds like Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, or the cuckoo’s nest of the TSH lab test and range, HUNDREDS OF MILLIONS of individuals still suffer. How stupid can they get.  This is a scandal that has effected a huge mass of individuals globally, past and present,  including those today who STILL linger with undiagnosed hypothyroidism thanks to the worthless TSH lab test or lingering hypo on the lousy T4-only medications. And all the above when we, as patients, have learned a far better way to treat our thyroid problems

Did you have relatives like my own Mom (who died in 2003) who lived the T4-only scandal alone?  Use the Comment form to tell us about them.  Have YOU suffered from a T4 med? Report it to the FDA here.

Also below, read about Jane Pauley and the health issues that make you wonder, since they can all be connected to a thyroid problem, either undiagnosed or untreated.  Below that, you’ll see posts about Oprah, Reverse T3, the problem of cellulose in our meds, the desiccated thyroid shortages, and more.

*HO HO HO! Have a STTM book sent to someone  you care about as a CHRISTMAS or HOLIDAY present. A card will be included, and the book will be in an envelope with a red bow!! Save money the more you buy!

But you gotta wonder if they will be wearing noise reduction headsets and ear plugs…or not…when it comes to the scandal of synthetic T4-only medications.  Will they?

Just today, the U.S. Department of Health and Human Services and the Food and Drug Administration (FDA) announced the Safe Use Initiative, “a program aimed at reducing the likelihood of preventable harm from medication use”.

Statements I gleaned from this initiative include:

1. Today, tens of millions of people in the United States depend on prescription and over‐the‐counter (OTC) medications to sustain their health—as many as 3 billion prescriptions are written annually. Too many people, however, suffer unnecessary injuries, even death, as a result of preventable medication errors or misuse.

2. Although FDA and many other stakeholders have been working to improve how the healthcare system manages medication risks in the United States, it is widely recognized that more needs to be done to protect the public from preventable harm from medication use.

3. Medications offer great benefit, but they come with risks. Whenever medications are not used optimally, risks of harm can increase significantly.

4. FDA proposes to identify, using a transparent and collaborative process, specific candidate cases (e.g., drugs, drug classes, and/or therapeutic situations) that are associated with significant amounts of preventable harm.

This initiative is actually far broader than what I gleaned above, and also involves self-abuse, exposure of dangerous medications to children, dire side effects, and more. Five areas are also specifically targeted:  Consumer medication information (CMI), Medication dosing devices, Acetaminophen toxicity, Alcohol-based surgical preps, and Medications in vials. You can read more in the fact sheet.

But if the FDA is going to do their job with this initiative, or do their job overall, you have to wonder if they will listen to and include the problems associated with being treated with a T4-only medication as experienced by millions of patients worldwide. Continuing symptoms of hypothyroidism while on this inadequate treatment is widespread and damaging for many, causing hands reaching deep in pockets to pay for numerous doctors appointments, besides antidepressants, anti-anxiety meds, blood pressure meds, statins, cortisol meds for adrenal fatigue, and other medications which we would have never needed, and would have been preventable, if we had been on natural desiccated thyroid like Naturethroid or Westhroid in the first place.

Many patients on thyroxine, T4-only medications will also report actual hospital visits due to the side effects of a poor treatment.

In other words, thyroxine aka levothyroxine aka T4 treatment has been an unsafe and harmful treatment, causing millions to suffer unnecessary injuries and side effects for over 50 years of its useless and popular use.  It fits the Safe Use Initiative. Or at the very least, it calls for the FDA to listen to patient experience with this lousy choice to treat hypothyroidism.

Listen to us, FDA. Listen and be wise.

P.S. See the blog post below about a genetic reason why so many do lousy on T4.

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.

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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http://www.youtube.com/watch?v=bFzS0wgwyW4&annotation_id=annotation_179773&feature=iv

Janie

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

*See below on how being on T4 meds can affect your liver. And below that–why I’m handing my promise ring back to Forest Pharmaceuticals.

The memory stands out in my mind like a beacon. And when my Dad brought her home, he took me aside and explained that my mama was not going to remember where things are for awhile, and we’d have to help her. That was especially true with the 4-legged sewing basket.

She eventually regained her memory. But she was never again the same bright and quick witted mother I used to have when I was younger.

Why was shock treatment done?  To counter her mysterious ongoing and disabling depression.  And this was her last option.

It didn’t work.

She lived on anti-depressants, specifically a high dose of Elavil, the rest of her compromised life.

And more than 40 years later, about a year after her death, a change in my own life with Armour helped me realize why she had to be dependent on an anti-depressant for so many years:  Synthroid.  My mother was on Synthroid almost her entire adult life—a medication, along with Levoxyl, Levothyroxine, Unithroid, Eltroxin, Levaxin, Norton, Eutrosig  and Oroxine, which leaves nearly all patients with lingering hypothyroid symptoms, including one of the most common one:  chronic on-going depression.

And a large body of doctors all around the world just don’t get it.

What brought this memory of my mother up in my mind? Because two days ago, I chatted with a gal on Synthroid.   By all appearances, she seemed to be doing well, as some will make you think.  She said she had enough energy, wasn’t losing her hair, and felt okay. But when I probed deeper, she admitted that her blood pressure was going too high (as happened to my mother on a T4-only med) and she had a problem with depression and was on Wellbutrin.  Bingo.

See http://biopsychiatry.com/hypothyroidism.htm which is also here: http://www.theannals.com/cgi/content/abstract/34/10/1142

Want to be informed of these blog posts?? Curious what’s on Janie’s mind? Use the Notification feature on the bottom left of the links.

Namely, they express deep concern that that since hypothyroid symptoms can mimic other conditions, patients may be getting an incorrect diagnosis which could expose some patients to the harmful effects of excess thyroid hormones, while other serious conditions may go undiagnosed.

And they add: In other patients, adequate replacement with levothyroxine does not resolve symptoms, which are attributed to hypothyroidism rather than other conditions that may coexist, such as depression.

The article continues with:  Normalisation of thyroid stimulating hormone means a return to normal health in most patients with primary hypothyroidism.

In other words, what you have above are the Three Stooges of the stated beliefs of the British Thyroid Association.

Stooge stated-belief #1: “Incorrect diagnosis allow other conditions go undiagnosed” What is inferred is that there are a host of diagnoses of hypothyroidism that are incorrect. Why? Because a wise physician dared to listen to clear symptoms of hypothyroidism or use the free T3, in spite of a so-called “normal” TSH–a lab test which measures a pituitary hormone, not the cells ability to receive enough thyroid hormones.

Stooge stated-belief #2: “If adequate doses of levothyroxine do not resolve symptoms, those symptoms are due to something else.” That is akin to saying if eating 100 calories a day results in malnutrition and starvation, your malnutrition and starvation is due to something else. And one particular symptom they are referring to is depression–a classic symptom of undiagnosed and undertreated hypothyroidism in MILLIONS of individuals around the world.  And isn’t it just odd how that depression resolves itself when the patient is put on Armour and allowed to dose by the elimination of symptoms.

Stooge stated-belief #3: “A normal TSH lab result equals normal health in those treated for hypothyroidism”. Gee, funny how millions of thyroid patients around the world have had a so-called “normal” TSH lab result along with a diverse blend of continuing and CLEAR hypothyroid symptoms.  Additionally, we have a large and growing body of patients who, when they switched to Armour desiccated thyroid or other fine desiccated thyroid prescription meds,  had those symptoms resolved when they were dosed according to the free T3, improved blood pressure, strong heart beat, lowered cholesterol, and complete elimination of symptoms. Patients have learned what works!

When you understand the British Thyroid Association’s hell-bent and rigid stands against Armour desiccated thyroid, their promotion of one of the worst labs ever created to diagnose and dose by, their love affair with the most inadequate thyroid medication ever thrust onto the market by money-grubbing pharmaceuticals (levothyroxine), and their complete failure to listen to patients and recognize continuing symptoms of hypothyroidism while on synthetic T4, you come to realize how meaningful any article on hypothyroidism will be by the British Thyroid Association.

P.S.  Do ya wonder if the British Broadcasting Corporation (BBC) has the smarts to report the other side of the story??

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“Oh, I take thyroid meds, too.  Synthroid” she explained as she was writing on the papers with her pencil.

Now when I hear something like that, being who I am, I’m like a bear in a china cabinet who suddenly smells honey.  So as not to overwhelm,  I casually say “Oh, I used be on Synthroid.” And after a long pause while we are going over the paperwork, I say “Did you know there’s a worldwide patient revolution going on against medications like Synthroid?”

At the point, she raises her head in curiosity.

I then stick my paw in the honey: “You and I and millions have been put on meds like Synthroid and then told we are “normal” because the TSH says so. But all of us have continuing symptoms of hypothyroidism.  It’s a lousy medication. “

And when I laid out what those continuing symptoms were, her eyes got as big as saucers and she was shaking her head up and down in recognition. “Depression, rising cholesterol and blood pressure, easy weight gain, fatigue, less stamina than others, dry hair and skin, feeling cold, etc”, I told her.

And the most profound aspect of Michelle? She lives her life like the Energizer Bunny, going and going and going. She told me she often doesn’t get home until 6 pm doing her job, and she clearly has a lot of professional responsibilities.

But does an active Michelle mean that Synthroid works and is just as good a thyroid treatment as desiccated thyroid? You know the answer. She revealed that she’s quite tired when she comes home, wishes she had more energy, and still has issues with her weight, even though she lost some when she got on Synthroid.

And reading between the lines, it was clear that Michelle is probably on an anti-depressant, a statin, and a blood pressure medication.  And…she clearly has an adrenal problem that’s only going to get worse. She has a terrible time falling asleep at night (high cortisol), and is very sensitive to light and noise (high or low cortisol).

Suddenly it dawned on me. I am sitting across hundreds of millions of women, and some men. I am listening to how millions live their lives–making a living, maintaining a home, loving their spouses and children, interacting with people.  But underneath it all, it’s not a pretty picture. They cope, and they cope again.  And they dish out their money for more medications to treat the very symptoms caused by an inferior medication. And as they age, they’ll pay each of their millions of prices, just as my mother did, and as I was headed.  Energizer bunnies with faulty batteries.

P.S. Barack Obama has a health care reform plan. Will it change the lives of those 50 million with thyroid disease in the US, or will it only continue this T4-only travesty and health care scandal?  Are we headed in the same insane direction as the UK when it comes to T4-only?  Express your opinion.

Recently, after we watched a semi-scary movie about being suckered, a friend brought up my blog post of last July where I described a terrifyingly-real horror movie.

The plot: stunningly convince hundreds of millions of individuals worldwide that what is obvious, isn’t. i.e. it’s all in your head, you are adequately treated on Synthroid, Levoxyl, Eltroxin, Norton, et al,  and not only that, we’ll bandaid your continuing problems with more medications.

A second plot: also completely hoodwink those with top notch higher medical educations and experience by churning out the the exact same poppycock, and reward their stupidity with gifts.

The central villian: Big Pharma, followed by the doctors who bought the lie

Exactly a year ago this month, Science Daily came out with an article, citing two York University researchers who estimated that the U.S. pharmaceutical industry spends almost twice as much on promotion as it does on research and development, contrary to the industry’s claim. In other words, the researchers estimated that $57.5 billion in US dollars was spent on pharmaceutical promotion in 2004–the year they were studying. Yes, I said BILLION.

Breaking that down, Big Pharma spent approximately $61,000 per physician in promotion of their products.  And they concluded that both figures were UNDERestimates.  In other words, they concluded that the US pharmaceutical industry is marketing-driven rather than “life-saving”.

And adding fuel to the fire: most doctors believe every thrust of that marketing. I recently participated in comments with other wonderful patients in response to a DO/Endocrinologist, Dr. Thomas Repas, who has clearly bought the Big Pharma marketing when it comes to levothyroxine. You can read his posts and our comments here, here, and here.   Dr. Repas is exactly the kind of doctor who has  starred in our horror movie, and the kind of doctor that patients have lamented about for years.  Read the  Give Me a Break list of comments made by doctors, as well as further comments on the January 1st blog.

But Dr. Repas is in good company. Doctors have believed the Big Pharma lie about T4-only medications, and against desiccated thyroid like Armour, Naturethroid, etc. for 50 years.  In the patient-to-patient  Stop the Thyroid Madness book, you can read about the first tableting of Synthroid in 1955 and the strategic and successful promotion of T4-only, in spite of the fact that T4 was known to be unstable for decades.

And today, more than 50 years later, very few of us have been untouched by the Big Pharma push for levothyroxine T4-only treatment.  My own mother was suckered, and I was suckered.  And until patients started to make a huge push for desiccated thyroid treatment the last few years, nearly every single doctor around the world had been suckered.

We still have a way to go. But we’ll get there, bit by bit.

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.