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Confessions of an Undercover Thyroid Advocate

The following guest blog post is written by Amy McMullen, who had undiagnosed & symptomatic hypothyroidism for 20 years due to the sole use of the TSH, resulting in multiple health problems. She is now treating per the guidelines on STTM including T3 for thyroid hormone resistance, adrenal support, and desiccated thyroid.

I found her story below as an undercover advocate fascinating,  and think Amy is caring and committed,  in spite of severe restrictions! Bless you, Amy.

I spend an inordinate amount of time these days contributing to a well-known online thyroid disorders forum I’ll call “Thyroid Health Forum” (not its real name).

It’s a tricky forum with draconian rules: they don’t allow you to post any links to resources, talk about where you get your online labs done, include quotes from studies, or post any names of thyroid advocates. You can’t use a username you’ve used on any other forums and you can’t mention using their personal messaging system.

I’ve received a few “infractions” from the ever-vigilant board “administrators” and “moderators” (never could color inside the lines, I guess) and have been warned to never, under any circumstances, use the words “Stop the Thyroid Madness” or any references to this website or book in my posts.

At more than one point I was ready to walk away and just give up on it.  How can you share your experiences when there were so many rules that seemed designed to inhibit a free flow of information, to the point of not being allowed to mention the title of a good book by name or type in the word Google?

But I would read the following posts submitted by desperate people and this would keep me coming back to try, somehow, to help:

  • “Hi, my doctor says my labs are all normal but I’ve got so many symptoms, I can hardly function…”
  • “My doctor says that free T3 and free T4 testing is not useful, that my TSH is normal and that unless my TSH is high he won’t order any antibody tests…”
  • “My doctor says that my TSH is too low and wants me to cut back on my thyroid hormones, but I know I will start feeling bad if I do this… Help!”
  • “I am taking Synthroid but I feel terrible and my hair is falling out and now my doc wants me to take an antidepressant…”

You see, I was in this very same boat for far too many years. About 20 years back I started noticing symptoms:  fatigue, depression, menstrual irregularities, and dizzy spells. I went to see my doc who did the usual TSH test and when it came back “normal”, prescribed antidepressants. The antidepressants did help, but my menstrual problems intensified and other symptoms increased until I finally underwent a hysterectomy for dysfunctional uterine bleeding. Shortly thereafter, I collapsed with heart irregularities and autonomic nervous system dysfunction in the fall of 2006.

I went to over 10 different specialists spending thousands of dollars for medical bills with no real answers–just a lot of shrugged shoulders and a fibromyalgia diagnosis.

It wasn’t until my mother was hospitalized and routine blood testing came back with a TSH of over 6 that I looked again at my own thyroid. My TSH was never above 3. I had one free T4 test done following my initial collapse but, again, all tests were flagged “normal” and thyroid was passed over once again.

But a search about TSH lab ranges led me to Mary Shomon’s About.com articles, and while she seemed to be stuck on the idea that 3 was an acceptable number for the top of range for TSH, based entirely on the American Association of Clinical Endocrinologists recommendations, I finally found the Stop the Thyroid Madness site and learned otherwise.

It was here that I learned about other testing like free T3, free T4, thyroid antibodies, vitamin and ferritin levels and, very importantly, that the TSH should be the LAST test done for diagnosing hypothyroidism instead of the ONLY test. I finally caught on to how the medical establishment has failed miserably to adequately diagnose and treat hypothyroidism. I felt both incredibly empowered and very, very angry.

I quickly delved into the thyroid forums to share what I’d learned and to learn from others. The first forum I found was the aforementioned  “Thyroid Health Forum”, and since this is one of the best-known, it is where many of the newbies, like me, find themselves. There were both natural and synthetic hormone proponents on the board and the advice ranged from very good to quite bad. I soon found there were better forums like Realthyroidhelp and the natural thyroid hormone Yahoo groups that had really smart people who were happy to share resources and information that was truly useful. I spent a lot of time on these and learned a great deal.

But for some reason I couldn’t seem to leave the “Thyroid Health Forum”. The people who stumbled on there seemed so lost and I felt compelled to impart what I had learned to them. I would offer alternatives to the synthetics and explain why natural desiccated thyroid (NDT) was a superior treatment option and, more importantly, that they did have an option for their treatment, despite what their doctor told them. I’d relay what I had learned from other boards about access to NDT during the shortages.

When I figured out I had adrenal fatigue and later thyroid hormone resistance as a result of being undiagnosed for so long, I started relaying information about these issues to the many who were having difficulties getting optimized on their hormone replacement therapy. I found it to be both rewarding and enormously educating for myself as I would spend time researching questions that were asked about supplements, lab tests, and studies. I was not allowed to post links so had to summarize things I had learned and this taught me even more. The main messages I pushed were (and are):  get the right labs done, learn how to interpret them correctly, be your own advocate, know your treatment options, and don’t implicitly trust doctors.

I will continue to contribute what I’ve learned to the “Thyroid Health Forum”. So far I’ve managed to fly under the radar and play, however grudgingly, by their rules. I figure if I can get just one or two people to question the present thyroid clinical guidelines, as written by our friends at big pharma, I’ll be more than satisfied. I actually believe that by getting good information out there to as many sufferers as possible, we may create a groundswell of people who will no longer accept being dismissed as depressed complainers by their healthcare providers. And this is one more way we can help enact real change to the currently abysmal medical practice of thyroid diagnosis and treatment. Well worth it in my book!

*******************************

Latest news from RLC: Shipments of Naturethroid are beginning Monday, January 4th and the first two weeks with backorders going out ASAP.  Medco should have some by the end of January. Their Patient Information Line: Naturethroid/Westhroid: 877-600-4752

Thyroid  patient guest posts can be read about here: /writing-a-guest-blog-post-on-sttm/

Want to honor someone who has helped you?? See the blog post below and thank someone.

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  • Hip hip!! STTM has new products to help spread the word, here. Great BUMPER STICKERS, too, here. Spread the word--YOU may make a difference in someone’s life.
  • Check out the NEW REVISED patient-to-patient book with even more detail (and which doctors seem to respect more than websites).
  • Need to understand all your best options for thy­roid treat­ment? Go here.
  • Want to keep track of these "fringe website" blog posts? ;-) Curious what’s on Janie’s mind? Use the Blog Notification on the lower left of the links. or use an RSS Feed.

Suffering on Synthroid: imagine how horrific it was before the internet

Elizabeth Alexander 1959

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!


  • Hip hip!! STTM has new products to help spread the word, here. Great BUMPER STICKERS, too, here. Spread the word--YOU may make a difference in someone’s life.
  • Check out the NEW REVISED patient-to-patient book with even more detail (and which doctors seem to respect more than websites).
  • Need to understand all your best options for thy­roid treat­ment? Go here.
  • Want to keep track of these "fringe website" blog posts? ;-) Curious what’s on Janie’s mind? Use the Blog Notification on the lower left of the links. or use an RSS Feed.

Jane Pauley: hives, depression & bipolar may be more connected to a poorly diagnosed and treated thyroid condition?

JanePauleyYou might have already known about her, but it was only a few days ago when I found out that the effervescent Jane Pauley, former host of the The Today Show and Dateline NBC, has had certain medical struggles in her lifetime. They have included hives (treated with steroids), depression (treated with an anti-depressant), a bip0lar disorder (treated with lithium), and the autoimmune thyroid disease called Hashimotos (treated with Levoxyl).

Hives are sudden small raised bumps which can mass into patches, and are often itchy and miserable.  Bipolar, also called Manic Depressive Disorder, involves swings between extreme mania (excited, energetic) followed by depression (extreme sadness or lowered response to life).

And all the above four issues made me pause.  Consider the following:

1. Hives have not only been linked to hashimotos disease, they have both been successfully treated with the most brilliant medication for hypothyroidism ever created: natural desiccated thyroid. That healing connection was revealed by the beloved Dr. David Derry of Canada here.  Hives is also mentioned as a lingering hypothyroid symptom while on T4 meds which went away with desiccated thyroid.

2) Depression is all too common for those with undiagnosed hypothyroidism (thanks to the lousy TSH lab test) or undertreated thyroid disease (thanks to the lousy T4-only meds like Levoxyl which promotes depression and other lingering symptoms). Many patients report a resolution of their depression with desiccated thyroid.

3) Bi-polar can often be a misdiagnosis for Hashimotos disease, since the latter can cause the same swings. Even without Hashi’s, bipolar and other mental health issues can be a common manifestation of low cortisol aka adrenal fatigue, also caused by undiagnosed hypo because of the TSH, or undertreated hypothyroidism with T4.  At the very least, bipolar can be a common manifestation of a hypothalamus-pituitary–adrenals (HPA) axis dysregulation, again common with those undiagnosed or undertreated hypothyroidism.

4) Lithium, ironically, is a known cause of hypothyroidism, only making one’s thyroid situation worse, as well as promoting potential adrenal fatigue and low cortisol.

Now granted, Jane’s big four of hives, depression, bipolar, and thyroid disease could be coincidental.  But there’s so much connection in one way or another between them that you are left wondering if she’s been a victim of misdiagnosis and undertreatment just like hundreds of millions of us thanks to labs and medications which do not work. And she may need a good doctor to be reevaluated, besides put on desiccated thyroid and discover what patients have learned about better treatment.

And on another note: I fear it’s going to take someone just as powerful, and as stricken with health issues which could be related,  as Jane Pauley is, to FINALLY break open the profound and destructive media silence about this scandal of thyroid treatment diagnosis and treatment which has left hundreds of millions SICK with profound stories,  and is the very reason Stop the Thyroid Madness exists. Do we dare hope? We’ll see.

Do you have a similar story of mental health issues that ended up being connected to your thyroid and/or adrenal state? Use the Comment form and let’s talk. Who knows–maybe Jane will see this, ponder, and become far better educated like we’ve had to become!

*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!


  • Hip hip!! STTM has new products to help spread the word, here. Great BUMPER STICKERS, too, here. Spread the word--YOU may make a difference in someone’s life.
  • Check out the NEW REVISED patient-to-patient book with even more detail (and which doctors seem to respect more than websites).
  • Need to understand all your best options for thy­roid treat­ment? Go here.
  • Want to keep track of these "fringe website" blog posts? ;-) Curious what’s on Janie’s mind? Use the Blog Notification on the lower left of the links. or use an RSS Feed.

The intrusion of reality about levothyroxine and depression

depressiont4I’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.


  • Hip hip!! STTM has new products to help spread the word, here. Great BUMPER STICKERS, too, here. Spread the word--YOU may make a difference in someone’s life.
  • Check out the NEW REVISED patient-to-patient book with even more detail (and which doctors seem to respect more than websites).
  • Need to understand all your best options for thy­roid treat­ment? Go here.
  • Want to keep track of these "fringe website" blog posts? ;-) Curious what’s on Janie’s mind? Use the Blog Notification on the lower left of the links. or use an RSS Feed.

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.


  • Hip hip!! STTM has new products to help spread the word, here. Great BUMPER STICKERS, too, here. Spread the word--YOU may make a difference in someone’s life.
  • Check out the NEW REVISED patient-to-patient book with even more detail (and which doctors seem to respect more than websites).
  • Need to understand all your best options for thy­roid treat­ment? Go here.
  • Want to keep track of these "fringe website" blog posts? ;-) Curious what’s on Janie’s mind? Use the Blog Notification on the lower left of the links. or use an RSS Feed.