Below is my story as creator of this patient-to-patient informational site, created for you to take the information into your doctor’s office. I personally went from the depths of nearly 20 years of T4-only hell with a form of Dysautonomia and other hypothyroid problems, to having the energy and stamina of a teenager thanks to 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!
(More details on my story is in the Introduction of the STTM book)
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, and I had excruciating insomnia for hours with nauseating and overwhelming fatigue. When I would wake 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 17 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 after diagnosis after diagnosis
During these 17 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 painful neurological tests. I was told I had Chronic Fatigue Syndrome (CFID’S). 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 your 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 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, bit by bit, in a way that no doctor had ever given me. It became clear that my problem was my thyroid and being on an inferior medication called T4-only meds, aka thyroxine, and being held hostage to an inadequate lab called the TSH.
And I proved it. By switching to natural desiccated thyroid in July of 2002, my life changed 180 degrees! 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.
My calling: Stop the Thyroid Madness
In the Fall of 2002, I started a thyroid site on Yahoo to get the word out about Natural Desiccated Thyroid. We all grew together. And from that group along with repeated frustration and anger at the continuing POOR treatment and RIGID ideology towards thyroid patients, comes this site, Stop the Thyroid Madness, a labor of love fueled by disgust and anger, which first appeared in in infant form in December 2005. My intent was to educate patients who, in turn, could take that information into their doctors offices and push for change.
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 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 got lousy, lousy advice by a doctor.
Natural desiccated thyroid works.
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 in ‘invisible disease”, made invisible by a blind and robotic medical profession who proclaim you “normal” because an ink spot on a piece of paper says so, and bandaid 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. Namely, though all the above occurred just as you read it, I still raised three children, had my own jewelry line, kept up large houses, made each Christmas special, each birthday special, got a Master’s Degree, 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 thyroxine.
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). 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. And I am very lucky that being on natural desiccated thyroid has virtually taken it away.
**You can also read the stories of others HERE whose lives have been changed due to natural desiccated thyroid!
**Read my blog comments HERE, and respond to them.
**For MORE details to my story, you will enjoy reading the STTM book, the bible of correct thyroid treatment.
Want to order your own labwork, as I’ve done before?? STTM has created the right ones just for you to discuss with your doctor. Go here: https://sttm.mymedlab.com/
Need help interpreting your lab results? Go here: www.stopthethyroidmadness.com/lab-values/