I am a hypothyroid patient (who later acquired Hashimoto’s). I personally went from the depths of nearly 20 years of T4-only hell and being told I was “normal” in spite of debilitating symptoms…to having the energy and stamina of a teenager thanks to having T3 in my treatment (which at the time was a working natural desiccated thyroid) and dosing NOT by the TSH, but according to the complete elimination of symptoms and the free T3, plus correcting other issues related to being poorly treated for so long. So have many others and so can YOU! Janie, hypothyroid patient and site creator
(More details on my story is in the Introduction of the STTM book)
More about me
My name is Janie. I am the daughter of a hyperthyroid mother who had her thyroid removed at age 22. I thought nothing of it when it came to me. I was young, healthy and invincible!
But looking back, something fishy was going on after the birth of my second child when I was 27 years old. When nursing, I had 8 illnesses in nine months culminating with pneumonia. The same chronic illness scenario occurred 2 years later after the birth of my third child.
Additionally, I was weak. My arms were incapable of holding my babies or toddlers for more than a few minutes, and I had to continually pass them over to my husband. It was disheartening not to hold my babies, but we simply thought I was worn out, being the mother of two, then three children under age five!
When my real terror began
I was 30 and starting a career as a fitness instructor. After each and every afternoon one-hour class, I would not only fail to recover, my heartbeat would stay high, and I would become progressively more and more tired with each passing hour. By 8 pm, I was a basket case of debilitating and profound fatigue. When I would collapse in bed, my heart would POUND in my chest and my arms were like dead weights. I would sweat profusely; I was extremely hot; I had excruciating insomnia for hours with nauseating and overwhelming fatigue. When I would get up the next morning, I felt like I had been run over by an 18-wheeler and smashed against a concrete wall. I can’t begin to describe how awful I felt. And this scenario happened every single time after I taught a class.
Needless to say, by the time I was 31, a dubious diagnosis of “borderline hypothyroid” was discovered with a TSH of 5. I was put on Synthroid, my TSH dropped into the “normal” range, and I was told I was now “adequately treated”. But to my extreme disappointment, the above debilitating scenario continued exactly as it had before I got on Synthroid. I was forced to end my beloved career as a fitness instructor after only 2 1/2 years.
And more misery
The “adequately treated” hell was to continue for many more years while on Synthroid and later Levoxyl, no matter how much I took. Not only did the above scenario continue any and every time I tried to do an activity…
- I was unable to do any outdoor activities with my children without paying a price.
- I was unable to spend time shopping or long walking with friends due to my lack of stamina.
- I was limited in my abilities on vacations with my family due to my poor stamina and extreme reactions to exercise or the sun.
- I was unable to play Volleyball on a local neighborhood team due to paralyzing weakness in my arms just 15 minutes into the game.
- I had to choose jobs carefully to avoid long-term standing and movement.
- I had to deal with chronic low-grade depression, even though I was “adequately treated”.
- I had to take frequent naps to get by.
- If I tried to do any activity away from home, I was forced to take a day and more off to “recover’ from the debilitating results described above.
I spent thousands upon thousands of dollars and gas trying to find out what was wrong and to no avail. I was always “adequately treated” with a T4-only medication with a “target” TSH.
Doctor after doctor, diagnosis after diagnosis
During these T4-only treated years, I saw a broad slew of doctors and was tested for every condition imaginable. I did tests for hypoglycemia; I had a painful muscle biopsy; I did the ACTH Stim test; I had blood drawn for every imaginable hormone problem; I did a treadmill test; I took beta blockers; I wore a heart monitor; I did bizarre and extremely painful neurological tests. I was told I had Chronic Fatigue Syndrome (CFS/ME). I was told I had an unusual “energy metabolism disorder.” I was tested for Glycogen Storage Disease. I was told I have a “mitochondrial disorder”–a prognosis which would only get worse. And on my own, I saw similarities to what I had to Dysautonomia–an overreaction by the autonomic nervous system. But never, ever was there any conclusive diagnosis as to what I had, and it was never my ‘thyroid’.
I had to give up
By 2002, my problems became so severe that I was finally ready to begin the process to apply for Social Security Disability. I couldn’t stand for more than 30 minutes without the above bizarre and debilitating dysautonomic over-reaction. I would even be debilitated simply from sanding a small wood project in my hands while sitting in a chair! It was miserable, and I would sit on my front deck and cry.
But 2002 was to hold another surprise for my life. Since I could do nothing more than sit at my computer, I researched days on end. And finally, I was adding things up on my own, bit by bit, in a way that no doctor had ever given me. It became clear that my problem was in fact my thyroid and being on an inferior medication called T4-only meds, aka thyroxine or levothyroxine, and being held hostage to an inadequate lab called the TSH.
And I proved it. By switching to having T3 in my treatment (with a working natural desiccated thyroid aka NDT) in July of 2002, my life changed 180 degrees! This would have also happened just by adding T3 to my T4, but using NDT made a lot of sense. I no longer had any of the dysautonomic reactions I had been suffering with for more than 20 years. Gone! Kaput! It was nothing short of a life-changing miracle. As I made my way up to my then optimal, symptom-free dose of 3 3/4 grains (which will be different for each individual), I saw my hair and skin soften, my chronic low-grade depression disappear, my constipation abate, my weak arms & legs and painful feet go away. And best of all, I regained the energy and stamina of a teenager. Later, my optimal dose was 4 grains due to estrogen dominance from peri-meno, and after meno, it was 3 1/2 grains.
My calling: the Stop the Thyroid Madness website, books, coaching calls and more.
In the Fall of 2002, and before Facebook even existed, I started the Natural Thyroid Hormone Users thyroid group on Yahoo to get the word out about Natural Desiccated Thyroid, and even T3. People started joining left and right. We shared information, viewed each other’s labs, discussed symptoms, read research papers and certain books. And many even became guinea pigs for certain experiments. And most of all, we simply listened to each other. It didn’t matter if we had Hashimoto’s, or no thyroid, or thyroid cancer, or just hypothyroid due to any cause…we worked together.
And what we were learning from each other was profound. Thus, I decided to start compiling all the patient-to-patient experiences and observations on a website which I called Stop the Thyroid Madness LLC. The name fit, as there was truly (and still is) complete madness in the medical community. It first went up in December 2005, and I have continually added to it as we continue to learn from reported patient experiences, observations, and wisdom. There are important and life changing books which you can read about here. Yes, there is some info in the books that is not on the website, and vice versa.
My intent has always been the same…to educate patients based on the experiences, observations and wisdom of other patients as they got well. In turn, that information could be taken into your doctor’s office to fight for a much better treatment.
This site is dedicated to the MILLIONS of thyroid patients all over the world, struggling to feel better…to live again…in the face of a well-meaning but ignorant medical treatment with T4 meds as well as the TSH lab test–both which keeps us all sick in our own unique degrees, whether right now, or as we age.
It is also dedicated to one gal who called herself Miserable Mom and who got lousy, lousy advice by a doctor on a website health forum. That was the final straw for me.
Natural desiccated thyroid works. Even adding T3 to your T4 is FAR better than forcing your body to live for conversion alone.
An “invisible disease”
In spite of my story above, would you be surprised to read that most folks who knew me during all those miserable years would be shocked that I went through all that??
It’s typical of an ‘invisible disease”, made invisible by a blind and robotic medical profession which proclaims you “normal” because an ink spot on a piece of paper says so, and bandaids your symptoms with other pharmaceutical medications. You may also live invisibly, and simply fake it the best you can out of embarrassment about a problem that you can’t get a diagnosis for or the right treatment. Namely, though all the above occurred just as you read it, I still raised three children, had my own jewelry line, kept up a large house, made each Christmas special, each birthday special, got a Master’s Degree, had a counseling business, taught continuing education self-help college classes, taught in public school a few years, participated in archaeological digs, and other life activities. But I paid horrific prices often and privately….and I adapted my life all over the place just to be able to do some of the above. Many, many of us are just like this when on T4-only.
An additional realization about being on T4
Turns out that my Dysautonomia may not have been “caused” by T4, since Dysautonomia is related to Mitral Valve Prolapse (which I have), a benign heart condition that means this valve is a bit floppy. But there comes the realization in hindsight that being on the inadequate treatment of T4 worsens any condition you may already have. That was especially true for me. I was disabled by my overreactive autonomic nervous system. And I am very lucky that being on natural desiccated thyroid has virtually taken it away.
For MORE details to my story, as well as information which can change your life, I strongly recommend the updated revised STTM book, totally based on repeated, worldwide patient experiences and the wisdom gained from it all.
And there’s Hashimoto’s: Taming the Beast--a companion book to the above and filled with patient experiences in putting Hashimoto’s into REMISSION! You will appreciate all the wisdom written in a concise way.
Additionally, there is the STTM II book—each chapter written by more enlightened medical professionals and enables you to get more detail from the mind of well-trained physicians.
- Check out the stories of others HERE whose lives have been changed due to a working natural desiccated thyroid or even T3!
- Read my blog comments HERE, and respond to them.
- Learn about Natural Desiccated Thyroid. Learn about T3. Learn why T4-only meds don’t work.
- Here’s why we learned that going by the TSH is the worst thing we can do.
- A summary of everything thyroid patients have learned.
- Read about the autoimmune version of thyroid issues called Hashimoto’s.
- Here are the books you will want.
- Here’s where to order your own saliva cortisol test.