There once was a gnarly, bottom-scratching and tuna-breathed man who terro­ri­zed a neigh­borhood as if he was above the law. He inti­mi­da­ted peo­ple, used threats to stop others from telling the truth about his actions, and he moo­ned his hairy but­ta­mous to anyone he didn’t like. He brought other cri­mi­nals into his large house, took bri­bes to do some of their own dirty work, and stole every sin­gle vege­ta­ble and fruit from all his neigh­bors gardens.

Finally, all the fear­ful, frus­tra­ted and hungry neigh­bors got angry, sick and tired of it all. So they sent him emails, let­ters and phone calls, asking him to stop what he was doing, and explai­ning how he was hur­ting their lives and well-being,  and spe­cu­la­ted how he was going to do this or that.

And do you think he stop­ped doing what he always did?

Finally, the neigh­bors got wise. They reached out to the police, to local radio and TV sta­tions, to the news­pa­per, and even to local poli­ti­cal lea­ders.  They sta­ted the facts as they knew them, how spe­ci­fic actions affec­ted their lives, how they had spe­cu­la­tions that they couldn’t prove but were quite uncomfortable…and they made sure ever­yone knew what was going on to get the help and sup­port they nee­ded. 

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For over 100 years, thy­roid patient lives have made a huge and posi­tive turn-around on natu­ral por­cine desic­ca­ted thy­roid, a supe­rior, safe, and effec­tive medi­ca­tion as expres­sed by all our lives for over a cen­tury.  But today, we face a crisis.

The most popu­lar desic­ca­ted thy­roid brand, Armour, was refor­mu­la­ted by 2009  and most patients repor­ted a return of their hypothy­roid symp­toms. Then, the only other major phar­ma­ceu­ti­cal, RLC Labs, has their qua­lity Natu­reth­roid and Westh­roid on bac­kor­der in August of 2009. The only North Ame­ri­can makers of the desic­ca­ted pow­der, Ame­ri­can Labo­ra­to­ries, is out.

And finally, the remai­ning two gene­ric makers, Time Caps Labs and Major Phar­ma­ceu­ti­cals, are told to cease pro­duc­tion by the FDA.

We are now without desic­ca­ted thy­roid other than the remai­ning 10 tablets there, or 5 tablets here. They will all be gone soon.

The facts we know are this: because of the 1962 “Drug Effi­cacy Amend­ment”, the FDA is sud­denly deman­ding phar­ma­ceu­ti­cal drug manu­fac­tu­rers (with medi­ca­tions which have been used suc­cess­fully for 80 – 110 years) pro­vide proof of the effec­ti­ve­ness and safety of their drugs before they can receive true FDA appro­val, aka poten­tial cli­ni­cal trials and the data that results. i.e. 110 years of patient suc­cess, and a web­site like Stop the Thy­roid Mad­ness, and tes­ti­mo­nies all over the net and in patient groups with desic­ca­ted thyroid…is somehow…just…not…enough.  What is obvious, is not enough.

In other words, they want proof of effi­cacy and safety of desic­ca­ted thy­roid — a medi­ca­tion which has a safe and effec­tive track record in a huge body of patients for 110 years…in the same way they give an FDA-stamp-of-approval on a whole variety of drugs which, in 2004, killed 783,936 indi­vi­duals per year (accor­ding to the article Death by Medi­cine, co-authored by By Gary Null, PhD; Carolyn Dean MD, ND; Mar­tin Feld­man, MD; Debora Rasio, MD; and Dorothy Smith, PhD).

Does THAT make any sense to you?

And now, because there is hint that they may require RLC Labs to apply for a New Drug Application…and because we won­der if that will mean expen­sive and drawn out cli­ni­cal tes­ting to pro­vide data…and because we won­der if they will allow RLC to con­ti­nue manu­fac­tu­ring our only good supply of desic­ca­ted thy­roid which saves our lives in a com­ple­tely healthy way…we are left with a lot of uncom­for­ta­ble and unans­we­red questions.

Of course, we can admit that all the above is pure spe­cu­la­tion. We don’t know what will hap­pen until it hap­pens. But we are strongly uncom­for­ta­ble with the unk­nowns, frus­tra­ted by the pos­si­bi­li­ties, and sca­red to death we might lose the only medi­ca­tion which has remo­ved our lin­ge­ring and debi­li­ta­ting symp­toms while we were once on synthe­tic T4 – aka Synth­roid, Levoxyl, levothy­ro­xine, etc.

And by the way, synthe­tic T4 is an FDA-approved medi­ca­tion which has left most of us sick or with lin­ge­ring symp­toms to our own degree and inten­sity for YEARS. Perhaps THAT is what you need to write the FDA about.

So do we email the FDA about this situa­tion?? I am of the belief that writing/emailing the FDA is no dif­fe­rent than asking the neigh­borhood ogre to change.  I could be wrong, but it is my deep sus­pi­cion. In fact, I am sus­pi­cious that the ons­laught of com­mu­ni­ca­tion with the FDA is going to do more harm than good…if it hasn’t already…just as wri­ting and emai­ling the neigh­borhood ogre would pro­bably cause him to laugh and do even MORE harm.

So what seems the best and most logi­cal action to take with our current situa­tion? Write/email your sena­tors. Write/email your repre­sen­ta­ti­ves. Write/email news­cas­ters, talk show hosts, radio per­so­na­li­ties, news­pa­pers of merit, and anyone who has the power to spread the word. In my mind, we can­not expect to face what may be with power unless we inform the world of our plight ahead of time.

How to say what we need to say? I think, for our inte­grity in the eyes of whom we speak/email/write to, it’s impor­tant to state facts first and fore­most. For me, if I need to men­tion spe­cu­la­tion, I turn them into ques­tions: Will RLC be able to afford cli­ni­cal trials? Will the FDA stop all desic­ca­ted thy­roid? You may not agree but that’s what seems wise for me.

I have com­pi­led a list of par­ti­cu­lar con­gress­per­sons who just last year, made a reso­lu­tion against the FDA. You will see a list of those sup­por­ters at the bot­tom of the page with their con­tact info. Email them.  You will also find links to con­tact each and every other poli­ti­cal office. If I have mis­sed something, let me know and I’ll add it.

I have also com­pi­led a sim­ple tem­plate let­ter you can use, or change exactly as you need it chan­ged, for these emails.  It will not fit every sin­gle indi­vi­dual who uses it, so change it as you may. But keep it short and suc­cinct. Too much to read will turn off the reader.

I have tried hard in this post to com­mu­ni­cate my thoughts and intui­tion. I also still have some strong hope and faith that this IS going to work out, one way or the other. I’m just not into fear-mongering based on spe­cu­la­tion.  Some of you may not agree with my sen­ti­ment, but that’s okay. And some of you may agree that it’s time to strongly com­mu­ni­cate with our con­gress­per­sons, and I will hope you follow through. All of us need to follow through. I need to follow through. You need to follow through.

NEED OPTIONS FOR THYROID TREATMENT during this hard time? Go here. You’ll also find seve­ral Cana­dian Phar­ma­cies to use with a presc­rip­tion, as well, that is much easier than orde­ring directly from Erfa.

NEED A GOOD DOCTOR? Go here.

NEW TO DESICCATED THYROID? Here’s everything patients have lear­ned.

*Want to be infor­med of this blog posts? Curious what’s on Janie’s mind? Use the noti­fi­ca­tions on the left below the links.

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