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The story of one little bumper sticker about depression and a life potentially changed!

Reading and responding to my daily emails is a huge job that takes a lot of time. My 92 year old mother-in-law thinks I’m obsessed with my computer. ha!  If only she knew.  But some of those emails stand out in my mind.

As a recent example, one gal wrote to tell me she had suffered from depression for so many years due to her poorly diagnosed and inadequately treated thyroid condition. And because her use of desiccated thyroid had hugely improved her mood, she was inspired by and had purchased the STTM bumper sticker about depression. You can see it here.

And unbeknown to her innocent husband, the bumper sticker went on HIS car.

And just two days later, she explains what happened:  My husband was coming from his cardiac rehab exercises to the shopping center locally, and when he got out of his car,  another car pulled behind him, blocking the lane.

Turns out that the other driver, a man, jumped out and wanted to know what the bumper sticker means.

She continued: My husband figured the guy meant his Marine Corps stickers but no, he meant the thyroid sticker. So my husband says, bewildered ‘What Thyroid sticker’?

After realizing it was there, the other man explains how his wife has been diagnosed with thyroid disease and her dr. wants her on antidepressants.

She said: “My poor hubby only knew that I feel so much better on Natural hormones and I am not as depressed as I was before. All he could tell him was “she got it off the internet”.

I’ll bet he saw the URL on the sticker, and his wife is going to get some life-changing information from Stop the Thyroid Madness.  So we can never underestimate how little things we say, or show, or do are going to make a difference in someone’s life.

I hope each and every one of you are being “thyroid patient advocates” and spreading the word to others. If you like using bumper stickers or t-shirts, go here.

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ABOUT PROBLEMS WITH THE STTM SITE: There have been numerous problems with folks getting on STTM the last few weeks. The first problem was due to a software installed by my web designer to prevent attacks by spam bots. That was fixed. But if you visited during that time and use IE, just clear your caches. Others may need to use a different browser.  You then may be able to go back to your original browser.

But since then, more problems have creeped up. It’s called GROWING PAINS. i.e. STTM has become so popular that more problems pop up. And since we have limited resources, we just have to deal with them, one at a time. So please announce on all your groups that STTM has not gone away, that we are working to fix problems related to growing pains,  and to try again if they at first can’t get on. If you want to contribute to the hosting fees, go here:  http://www.dreamhost.com/donate.cgi?id=8074

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TWO SITES YOU NEED TO REGISTER WITH:

1)  http://www.tpa-uk.org.uk/register_of_counterexamples.php A Register of Counterexamples to levothyroxine-only-therapy, set up by Sheila of TPA-UK.  “Counterexamples” means all those symptoms which proved that T4-only meds do NOT work.  She will be using this to get the attention of doctors and authorities in order to re-examine the use of T4-only for all forms and degrees of hypothyroidism.

PLEASE NOTE: This questionnaire is only for those prescribed levothyroxine (T4-only) and who failed to get relief for the elimination of their symptoms, and who then started using a T3 containing hormone (either synthetic or natural). It’s also for those who were denied a diagnosis and treatment, and tried a T3 hormone containing product and found your symptoms became less.

2) http://www.worldthyroidregister.com/ A site established by Dr Gorder Skinner to gather as many signatures as possible to establish a Worldwide standard treatment for thyroid sufferers.

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!

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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.

NOTE: if you were receiving email notifications about these posts,  the company doing them is out of business. Instead, use an RSS Feed.

The dirty-yellow brick road to ADRENAL FATIGUE…are you headed there??

 

STTM YELLOW BRICK ROAD(This page was first written in 2008 and has been updated to the present day and time. Enjoy!)

Do you ever feel like you want to strangle your doctor with your bare hands?

Of course, we don’t mean it literally, but there is heightened frustration about the lack of knowledge displayed by our doctors! 

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/adrenal insufficiency, 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 Natural Desiccated Thyroid for a year and a “normal” TSH.

But suddenly, she felt the need to return to her groups and seek feedback. Because 2 grains was not an optimal dose for Belinda. 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/adrenal insufficiency–a needless condition of over-stressed and now under-functioning adrenals i.e. low cortisol. As a result, T3 in natural desiccated thyroid starts to pool in the blood, or raises the inactive Reverse T3, either causing anxiety, insomnia, and all sorts of low cortisol symptoms.

In Belinda’s case, the problem was that 2 grains was not an optimal dose for Brenda, even if her TSH looked oh-so-normal! Because it’s never about the TSH. It’s about where our free T3 falls and more.

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. 
  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, then to fall into the abyss of low cortisol.
  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, dedicated or wonderful, 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/insufficiency are higher 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.

JanieSignature SEIZE THE WISDOM

 

 WANT TO UNDERSTAND MORE ABOUT HOW WE FALL INTO HAVING LOW CORTISOL?  

Order the STTM II book and read Chapter 15. It’s brilliantly written by an MD who gives a most excellent explanation of how we get there!

 

 

 

STTM graphic How cortisol can cause problems when raising NDT