My Story

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, 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. So have many others and so can YOU! (More 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 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.

A miracle

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 life 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/