• Around the world
• Patients

It would make an inc­re­di­ble horror movie. The plot: stun­ningly con­vince at least hun­dreds of millions of indi­vi­duals world­wide that what has always been obvious, isn’t. That lea­ves only look green because of alien fil­ters in your eyes. That ripe apples fall because water pulls them down. That fire doesn’t really burn your skin; it’s just your imagination.

And about hun­dred more schi­zoph­re­nic ying yangs. Because if those in autho­rity say so, it must be so.

But the horror movie is a rea­lity, and I see it EVERY TIME I come into con­tact with peo­ple and the sub­ject of my thy­roid advo­cacy comes up.

Like today. A cou­ple saw my book and struck up a con­ver­sa­tion. She was on Synth­roid; he was on Levoxyl. They had each been on their T4-only treat­ment for 12 and 14 years res­pec­ti­vely, felt their hypo was per­fectly trea­ted, belie­ved their doctors…and were now dea­ling with other pro­blems: his rising cho­les­te­rol, her depres­sion, his fati­gue, and her weight gain. BUT OF COURSE, THOSE HAVE NOTHING TO DO WITH THEIR T4-ONLY TREATED HYPOTHYROID AND SOME OF IT IS THEIR OWN FAULT…leaves aren’t really green, water makes ripe apples fall, and fire doesn’t really burn.

It just struck me. And it’s struck me before. There’s just a LOT of SILENT SUCKERS wal­king around. I was one; my mother was one; and there are obviously millions out there, still wal­king around trying to live with the side effects of a treat­ment that their doc­tors say are NOT cau­sed by their thyroid.

Sad.

(Has your cho­les­te­rol and other lipids impro­ved since you switched to Armour and rai­sed without using the TSH? Your story of suc­cess is wel­come on the blog post below!)

Have you ever had someone say something in JUST a way that it hits you bet­ween the eyes?? That’s what Diane did to me. She’s a thy­roid and adre­nal patient, and we were dis­cus­sing the way a huge medi­cal web­site still gives out back­wards and harm­ful thy­roid treat­ment infor­ma­tion, telling patients to “raise their Synth­roid” to coun­ter their con­ti­nuing hypothy­roid symp­toms (which doesn’t work), or pro­noun­cing that because their TSH is “nor­mal”, those symp­toms are not rela­ted to hypothy­roid (they are.) This huge web­site has kept patients sick for YEARS, and is one of the main rea­sons I crea­ted STTM!

And Diane said to me “Somehow the true mes­sage needs to get into the main stream.”

Boink! That just hit me squa­rely bet­ween the eyes! Sure, I’ve been saying the same in a dif­fe­rent way for years – that our mes­sage needs to get out. But when Diane men­tio­ned the “mains­tream”, it hit me.

Here we are, vic­tims of a medi­cal scan­dal which has been going on for 50 years, and which has effec­ted HUNDREDS OF MILLIONS all that time. Some of those vic­tims are dead; and many more are still alive, with new vic­tims hap­pe­ning DAILY. Yet, the “mains­tream media” has never taken the time or inte­rest to report on this. HUHHH??

Wiki­pe­dia defi­nes the mains­tream media as the sec­tion of the media spe­ci­fi­cally envi­sio­ned and desig­ned to reach a very large audience, and that might inc­lude tele­vi­sion, radio, news­pa­pers and maga­zi­nes. Yet, what do you see on any of those mediums? You see the regur­gi­ta­tion of the old-boy, Poll­yanna methods of hypothy­roid diag­no­sis and treat­ment – the use of the TSH and total T4, plus T4-only meds like Synth­roid, Levoxyl, Levothy­ro­xine, et al. And if there is men­tion of desic­ca­ted thy­roid, it’s bare. YAWN.

Some pun­dants feel that there is a form of lite­rary cen­sorship going on in the main media…i.e. if it’s not sen­sa­tio­nal, for­get it. Others will cite bias and mani­pu­la­tion by those that report, espe­cially in the poli­ti­cal arena.

But what I lean to believe is that there’s a monkey-see, monkey-do men­ta­lity in the media. Namely, the mains­tream media lazily con­forms itself to the lou­dest, lon­gest or most financially-influential voice. And who’s had that voice in the thy­roid treat­ment arena?? The money-grubbing phar­ma­ceu­ti­cals, who thrust billions of dollars into medi­cal schools, besi­des their bright-eyed reps, to even­tually con­vince every doc­tor since the early 1960’s that the lousy T4-only medi­ca­tions (Synth­roid, Levoxyl, et al), and the dubious TSH lab tests, are from God Almighty.

So, that lie keeps being repea­ted, ad nau­seum, and the TRUTH, which comes from every­day patients all around the world, gets igno­red by the mains­tream media. Thus, millions out there still sit, mise­ra­ble or com­pro­mi­sed in their day-to-day lives, and on a myriad of other pills to coun­ter the lin­ge­ring symptoms…because their main con­tact with the world – the mains­tream media – is deaf and dumb – and they have not yet found Stop the Thy­roid Mad­ness, and may not for years!

So.…what can YOU do?? Con­tact the mains­tream media. SCREAM at the mains­tream media. DOG the mains­tream media. I have wor­ked hard to put YOUR truth up here and in the book. You can help by sprea­ding that word, one by one, like the Lilli­pu­tians who moved the giant.

*To con­tact ABC, go here.
*To con­tact MSNBC, go here or email Health@MSNBC.com
*To con­tact CBS, go here. Use the drop down menu to click on a news pro­gram
*To con­tact Fox News, go here.
*To con­tact CNN, go here.
*The top 20 Women’s maga­zi­nes are here.

Want to add more emails or web­site URL’s for con­tact? Just add a com­ment to this post below.

**Patients are repor­ting that the STTM book is even bet­ter than the web­site! Yeehaw! To order your copy, go to the publishing web­site here. There are also options to order one for your doc­tor, and one for Oprah!

Some­ti­mes I pon­der: the current move­ment away from Synth­roid & Levoxyl and all other T4-only meds to desic­ca­ted thy­roid like Armour (as well as the unders­tan­ding of the high pre­va­lence of adre­nal fati­gue with thy­roid patients), has been going on for ALL of the 21^st cen­tury. In other words, patients were star­ting to talk about desic­ca­ted thy­roid like Armour by the year 1999, and Yahoo’s Natu­ral Thy­roid Hor­mo­nes group was star­ted in 2002. Other patient groups sprung up around the same time. The lat­ter group is also where the know­ledge about adre­nal fati­gue in thy­roid patients grew, which was further added to on STTM. So.…has there there been any chan­ges in the way thy­roid patients are trea­ted for their hypothy­roid and rela­ted conditions?

The YES

Some­ti­mes I can say a resoun­ding yes! There are many doc­tors around the world who are loo­king at Stop the Thy­roid Mad­ness (STTM) and lis­te­ning to what is says. STTM is about the real life chan­ging expe­rience of patients! Some doc­tors tell me outright, either via the Con­tact Me form or by res­pon­ding to my blog posts here, that they are rea­ding it and appro­ving the infor­ma­tion. Or, I find out about other doc­tors second hand by patients who tell me their doc­tor TOLD THE PATIENT to read STTM. The lat­ter defi­ni­tely makes me chuc­kle when so many doc­tors tell patients that infor­ma­tion on the inter­net is DANGEROUS!

I can also say yes when I read the com­ments of patients on various thy­roid patient groups on the inter­net. Because of the infor­ma­tion patients have lear­ned from STTM, which is in turn pas­sed into the groups, patients all over the world are making demands in their doctor’s offi­ces, and some pro­gress is being made all over the world.

And a final yes can be utte­red by me when I see a few but gro­wing num­ber of web­si­tes pro­mote desic­ca­ted thyroid.

The NO

But there are so many situa­tions where I have to say no. 1) When doc­tors on inter­net forums TO THIS DAY con­ti­nue to give lousy advice to thy­roid patients, it’s dishear­te­ning. 2) When patients on thy­roid patient groups TO THIS DAY con­ti­nue to have doc­tors state each and every ridi­cu­lous give me a break com­ment, it’s sad. 3) When a famous female talk show host con­ti­nues to ignore each and every email sent to her for years about the deplo­ra­ble situa­tion across the world with thy­roid patients, as well as seem to misun­ders­tand her OWN thy­roid and poten­tial adre­nal pro­blem, it’s mad­de­ning. 4) And when I can run into patients DAILY when I go to the gro­cery store, or to the gas sta­tion, or to any public place, who are still on Synth­roid or Levoxyl and coping with innu­me­ra­ble symp­toms of a poor treat­ment, not exc­lu­ding adre­nal fati­gue, it’s scandalous.

So the com­plete ans­wer? Yes and no. The ball has defi­ni­tely been rolling for bet­ter treat­ment. Some doc­tors out there are truly lis­te­ning. Many patients out there are lear­ning and deman­ding change. It’s hap­pe­ning. But baby, we have a LONG WAY TO GO. And the power will be in the hand of patients who ques­tion their treat­ment, find ans­wers via STTM and other web­si­tes and patient forums, and con­ti­nue to demand change from their doc­tors and the entire medi­cal esta­blish­ment. I just hope to see more change soo­ner than later, don’t you?!

p.s. Want to spread the word?? Go HERE to order a t-shirt or bum­per stic­kers. You CAN make a difference!

A friend of mine, Kerry, recently con­fes­sed to me and a few friends that it was time to find a new doc­tor. Her nor­mal one had been a disap­point­ment for her far too many times. Time to move on.

And how she is moving on TOTALLY impres­ses me, and I think all of you rea­ding this should con­si­der this posi­ti­vely asser­tive and self-advocating strategy.

First, she scou­red through her list of doc­tors on her insu­rance plan, and found one that loo­ked pro­mi­sing. She called and spoke to his nurse on the phone. She then told us the follo­wing: I explai­ned that I use Armour and refuse to change meds; I am VERY invol­ved in my health; I watch my Frees care­fully and don’t rely on the TSH at all since the feed­back loop is inte­rrup­ted by meds..etc. With that said, the nurse sta­ted she would check with the doctor.

In other words, my friend Kerry refu­sed to do what all of us have done most of our lives – approach the doc­tor pas­si­vely. She clearly out­li­ned who she is, where her inte­lli­gence is about her body, and that she expects a part­nership, not a demi-god, one-sided dic­ta­torship of what is right and what isn’t right for her health care.

She also sta­ted that if this doc­tor didn’t come through, her next stra­tegy was to write a let­ter about her health needs and how she wants to be very invol­ved in her treat­ment, then fax it to every avai­la­ble doc­tor on her insu­rance list in her area and see if she gets someone calling.

MAJOR, HAND-CLAPPING BRAVO, Kerry!!

THAT, friends, is the way each and every thy­roid patient should approach their health care: can­did as to your beliefs about your treat­ment, and what you want from the doc­tor. And even­tually, your asser­tive approach will pro­duce a doc­tor who is going to be a gem for you! Remem­ber: it’s YOUR body and YOU live in it.

p.s. Without an insu­rance plan? Pull out the Yellow pages! And don’t hesi­tate to use parts of this Dear Doc­tor tem­plate let­ter to help you flesh out and com­pose your words or letter.

***WANT TO MAKE A FASHION STATEMENT ABOUT YOUR THYROID TREATMENT? Go HERE for a thy­roid advo­cacy t-shirt. I dare you to wear it to your doc­tors appoint­ment. (But if you don’t, wear it everywhere else. It does attract questions.)

For 2008, as a hypothy­roid patient: I will:

1) expect that the rela­tionship with my doc­tor will be a TEAM approach to my health care: not just his medi­cal school/continuing education/experience, but also my own impor­tant know­ledge and wis­dom that I have gai­ned (from rea­ding sites like this), plus my sub­jec­tive expe­rience on my medi­ca­tion. My doc­tor does not live in my body or expe­rience my symp­toms; I do.

2) take the time to find a bet­ter doc­tor if my doc­tor refu­ses to res­pect the know­ledge I have gai­ned from rea­ding sites like this, and/or will not lis­ten to my sub­jec­tive expe­rience in my own body!

3) make my symp­toms far more impor­tant than ink spots on a piece of paper called lab results, and will not pas­si­vely allow a doc­tor to treat me ONLY accor­ding to those lab results.

4) give myself impor­tant sup­ple­ments, inc­lu­ding, but not limi­ted to: sele­nium and zinc (helps con­ver­sion of T4 to T3), other mine­rals which may inc­lude mag­ne­sium, etc., plenty of B-vitamins (which are nee­ded as I improve my thy­roid func­tion, besi­des sup­por­ting my adre­nals), Vita­min C (also sup­ports my adre­nals) and more that I feel are sui­ted for my needs.

5) be open to the fact that if Armour or other desic­ca­ted thy­roid pro­ducts don’t seem to be wor­king, I am making one of seve­ral mis­ta­kes in my use of it, and will iden­tify my mis­ta­kes and correct them.

Do you have others as a thy­roid patient? Just res­pond to this post.