Doctors tags

Wish you could talk to others about rele­vant facts con­cer­ning the current shor­tage, the FDA’s actions with Time Caps Labs, DESI and the New Drug Appli­ca­tion, cli­ni­cal trials, and rela­ted con­cerns? Have impor­tant infor­ma­tion to share?

A new group has just been crea­ted to work along­side other groups, inc­lu­ding save natu­ral thy­roid. Smartly called the Coa­li­tion for Natu­ral Desic­ca­ted Thy­roid, it  repre­sents unity of con­cern and is crea­ted for patients, advo­ca­tes, medi­cal pro­fes­sio­nals, repre­sen­ta­ti­ves of phar­ma­ceu­ti­cals who manu­fac­ture desic­ca­ted thy­roid, or anyone with an inte­rest in the four aims of this group:

1) Sha­ring of fac­tual infor­ma­tion con­cer­ning natu­ral desic­ca­ted thy­roid
2) Dis­cus­sion of current issues rela­ted to desic­ca­ted thy­roid
3) Unity among all con­cer­ned
4) Coor­di­na­tion of grass­roots action where needed.

The dis­cus­sion, sup­port and action of this group does not limit itself to any one group, advo­cate, web­site or forum, and wel­co­mes any men­tion of infor­ma­tion from web­si­tes, advo­ca­tes, medi­cal pro­fes­sio­nals or etc. which/who post about or have the same con­cerns as the aims above.

Join the group here: http://health.groups.yahoo.com/group/CoalitionForDesiccatedThyroid

With the recent blog post by health wri­ter Mary Sho­mon con­cer­ning Dr. Sid­ney Wolfe’s new 4-year term with the FDA’s Drug Safety and Risk Mana­ge­ment Advi­sory Com­mit­tee, there has been much brooha and fear-mongering on thy­roid patient groups.

Why? Well look at it this way. This is a man of sta­ture. He is an MD, an Adjunct Pro­fes­sor of Medi­cine, the direc­tor of Public Citizen’s health research group which pro­mo­tes drug safety and public health, and edi­tor of the news­let­ter Worst Pills, Best Pills, and since August of  ’08, a mem­ber of the Drug Safety Com­mit­tee.  He also has a resume a mile long.

Yet in spite of his see­mingly caring acti­vism for our health and well-being, and his immense expe­rience and edu­ca­tion, he is clearly and com­ple­tely off-base about Armour and other desic­ca­ted thy­roid presc­rip­tion drugs. 

For exam­ple, as as edi­tor of the Worst Pills, Best Pills news­let­ter,  Wolfe dec­la­red Armour desic­ca­ted thy­roid as a “Do Not Use” pro­duct because it is not ade­qua­tely gua­ran­teed to pro­vide appro­priate blood levels of thy­roid hor­mone and relia­ble alter­na­ti­ves are avai­la­ble”. (Gee, funny how our expe­rien­ces are com­ple­tely other­wise.…)

Then in the May 2003 issue (of which you have to have a paid presc­rip­tion to read), he wrote an article tit­led  “Do Not Use! Natu­ral or Desic­ca­ted Thy­roid (ARMOUR THYROID) For Thy­roid Hor­mone Repla­ce­ment The­rapy.” In that article, the clue­less Wolfe sta­ted that he sup­por­ted The Ame­ri­can Thy­roid Association’s sta­te­ment “There is no evi­dence that desic­ca­ted thy­roid, a bio­lo­gi­cal pre­pa­ra­tion, has any advan­tage over synthe­tic thy­ro­xine.” (I guess millions of us and our impro­ved hear­trate, sta­mina, cho­les­te­rol, depres­sion and more…aren’t evi­dence?)

He then pro­po­ses that Armour is mostly presc­ri­bed for weight loss, is a niche mar­ket for the unsc­ru­pu­lous, and conc­lu­des with “if you are offe­red natu­ral thy­roid hor­mone repla­ce­ment treat­ment for any rea­son, this is a red flag and you should get a second opi­nion.” In a let­ter to con­su­mers, Wolfe and Public Citi­zen state that that T3 is only nee­ded from con­ver­sion and is pre­dic­tably found from con­ver­sion, that the T2 and T1 also found in desic­ca­ted thy­roid has essen­tially no acti­vity, that desic­ca­ted thy­roid is an unpre­dic­ta­ble mix­ture, that is has no pre­dic­ta­ble bio­lo­gi­cal acti­vity…plus so many more com­plete and total inac­cu­ra­cies based on “inte­llec­tual head chat­ter” not on obser­va­tion and experience.

Thud.

Mary Sho­mon, in 2003, did a bang-up job trying to com­mu­ni­cate with Wolfe, Worst Pills, Best Pills, and Public Citi­zen about the inac­cu­ra­cies of their beliefs and statements…basically to no avail. The TRUTH is here, and in more detail in Chap­ters 1 and 2 in the STTM book which are enligh­te­ning those rea­ding it all!

So we are left won­de­ring, six years later, what his four-year appoint­ment to this com­mit­tee will mean. But let’s make a few things quite clear to con­trast some of the fears going on and expres­sed on thy­roid groups:

1) Armour is not being ban­ned.
2) Wolfe is one of a current 9 mem­bers of this com­mit­tee. Wolfe is not “the com­mit­tee”.
3) Wolfe and seven others currently have voting rights. He is the only “Con­su­mer Repre­sen­ta­tive”.
4) There are still six more vacan­cies.
5) The com­mit­tee is NOT the power. They simply make recom­men­da­tions. And his­to­ri­cally, the FDA can be slow to act on their recom­men­da­tions, or doesn’t follow them at all (which is a GOOD thing when it comes to a SAFE and EFFECTIVE medi­ca­tion like desic­ca­ted thyroid).

So what can you do? I cha­llenge you to follow and act on the below, which puts our ener­gies into com­mu­ni­ca­tion, not fee­ding the ego and power of a mis­gui­ded man with our overtly expres­sed fears as if they have actually come to pass :

1) Remem­ber 1 – 5 above. Armour is fully avai­la­ble. Keep the facts straight, and fear-mongering down.

2) STTM has a power­ful and gro­wing page of tes­ti­mo­nies of those who switched to desic­ca­ted thy­roid.  Are you in there? If not, you need to be. This web­site currently has a huge audience. It’s noti­ced by doc­tors all over the world, as is the STTM book, which is YOUR book of YOUR expe­rien­ces,  which is also being orde­red by doc­tors. Use the Con­tact Me form at the bot­tom of that page.

3) Tell your expe­rience with Synth­roid or other thy­ro­xine medi­ca­tions at the follo­wing web­si­tes:  www.rateadrug.com,  www.drugs.com,  www.askapatient.com They don’t inc­lude any of the desic­ca­ted thy­roid meds yet, but you can tell of the nega­tive expe­rien­ces with all the T4-only drugs, inc­lu­ding adre­nal fati­gue if you fell into that, and all your lin­ge­ring thy­roid symp­toms.  The above links will take you to their Synth­roid page – you can search for the other T4 meds.  Remem­ber to men­tion Armour or other desic­ca­ted thy­roid meds and how they have hel­ped you!! Update: thy­roid patient Gina found the drugs.com Armour page: http://www.drugs.com/comments/thyroid-desiccated/armour-thyroid.html

4) Report your T4-only expe­rience to Med­Watch, the FDA’s  pro­gram for repor­ting pro­blems.  You will see an Online Repor­ting Form to down­load. Don’t fail to men­tion which pro­blems were remo­ved or greatly impro­ved when you switched to Armour, or the fact that you now have to deal with adre­nal fati­gue thanks to the ina­de­quacy of T4-only treat­ment. You can also call 1 – 800-FDA-1088, but remem­ber: your call is not to draw atten­tion to Wolfe’s opi­nions! It’s to draw atten­tion to how lousy a treat­ment T4 is as com­pa­red to how much bet­ter Armour has been.

5) Go to my article tit­led Synth­roid Sucks: the Rall­ying Cry of Thy­roid Patients vs. Clue­less Doc­tors and com­ment on this article, inc­lu­ding men­tio­ning what Armour, Natu­reth­roid or other desic­ca­ted thy­roid did for you. Rate it as well. Both keep this article in the media and in the eyes of others.

6) Go to www.medications.com where patients ask ques­tions and YOU can ans­wer, men­tio­ning YOUR expe­rience and how much bet­ter desic­ca­ted thy­roid has been. Clic­king on that will take you to the Synth­roid patient ques­tions. Ans­wer them. Be care­ful with links – they may not catch them at first, but will remove them if they do.  You can men­tion web­site names, tho, like Stop the Thy­roid Madness.

7) Send peo­ple here to follow all these steps. Power is in numbers!

8 ) Use the follo­wing web­site to email or write your sena­tors and repre­sen­ta­ti­ves: http://www.visi.com/juan/congress/ THEY DO READ THEM. And they will remem­ber this!  Here’s a tem­plate let­ter you can use:  www.stopthethyroidmadness.com/template-letter-to-your-senator-or-representive/

If you have other ideas and pla­ces to write or call, add your com­ment to this post. Remem­ber,  put your power in com­mu­ni­ca­tion! LOTS of communication.

P.S. Did you know that the Ame­ri­can Thy­roid Asso­cia­tion, in coo­pe­ra­tion with the Ame­ri­can Asso­cia­tion of Endoc­ri­no­lo­gists, together sup­port January as “Thy­roid Awa­re­ness Month”…which is sup­por­ted through an unres­tric­ted grant from Abbott Labo­ra­to­ries, the makers of Synth­roid?? Major UGH.

When I  was ten years old, my mother had elec­tric shock treatment.

The memory stands out in my mind like a bea­con. And when my Dad brought her home, he took me aside and explai­ned that my mama was not going to remem­ber where things are for awhile, and we’d have to help her. That was espe­cially true with the 4-legged sewing basket.

She even­tually regai­ned her memory. But she was never again the same bright and quick wit­ted mother I used to have when I was younger.

Why was shock treat­ment done?  To coun­ter her mys­te­rious ongoing and disa­bling depres­sion.  And this was her last option.

It didn’t work.

She lived on anti-depressants, spe­ci­fi­cally a high dose of Ela­vil, the rest of her com­pro­mi­sed life.

And more than 40 years later, about a year after her death, a change in my own life with Armour hel­ped me rea­lize why she had to be depen­dent on an anti-depressant for so many years:  Synth­roid.  My mother was on Synth­roid almost her entire adult life — a medi­ca­tion, along with Levoxyl, Levothy­ro­xine, Unith­roid, Eltro­xin, Leva­xin, Nor­ton, Eutro­sig  and Oro­xine, which lea­ves nearly all patients with lin­ge­ring hypothy­roid symp­toms, inc­lu­ding one of the most com­mon one:  chro­nic on-going depression.

And a large body of doc­tors all around the world just don’t get it.

What brought this memory of my mother up in my mind? Because two days ago, I chat­ted with a gal on Synth­roid.   By all appea­ran­ces, she see­med to be doing well, as some will make you think.  She said she had enough energy, wasn’t losing her hair, and felt okay. But when I pro­bed dee­per, she admit­ted that her blood pres­sure was going too high (as hap­pe­ned to my mother on a T4-only med) and she had a pro­blem with depres­sion and was on Well­bu­trin.  Bingo.

See http://biopsychiatry.com/hypothyroidism.htm which is also here: http://www.theannals.com/cgi/content/abstract/34/10/1142

Want to be infor­med of these blog posts?? Curious what’s on Janie’s mind? Use the Noti­fi­ca­tion fea­ture on the bot­tom left of the links. 

(Want to be noti­fied of my blog posts? Curious what’s on my mind? Use Noti­fi­xious to be infor­med. Look on the bot­tom left of the links where you can sign up. )

Recently, after we watched a semi-scary movie about being suc­ke­red, a friend brought up my blog post of last July where I desc­ri­bed a terrifyingly-real horror movie. 

The plot: stun­ningly con­vince hun­dreds of millions of indi­vi­duals world­wide that what is obvious, isn’t. i.e. it’s all in your head, you are ade­qua­tely trea­ted on Synth­roid, Levoxyl, Eltro­xin, Nor­ton, et al,  and not only that, we’ll ban­daid your con­ti­nuing pro­blems with more medi­ca­tions.

A second plot: also com­ple­tely hood­wink those with top notch higher medi­cal edu­ca­tions and expe­rience by chur­ning out the the exact same poppy­cock, and reward their stu­pi­dity with gifts.

The cen­tral villian: Big Pharma, follo­wed by the doc­tors who bought the lie

Exactly a year ago this month, Science Daily came out with an article, citing two York Uni­ver­sity researchers who esti­ma­ted that the U.S. phar­ma­ceu­ti­cal industry spends almost twice as much on pro­mo­tion as it does on research and deve­lop­ment, con­trary to the industry’s claim. In other words, the researchers esti­ma­ted that $57.5 billion in US dollars was spent on phar­ma­ceu­ti­cal pro­mo­tion in 2004 – the year they were stud­ying. Yes, I said BILLION.

Brea­king that down, Big Pharma spent appro­xi­ma­tely $61,000 per phy­si­cian in pro­mo­tion of their pro­ducts.  And they conc­lu­ded that both figu­res were UNDE­Res­ti­ma­tes.  In other words, they conc­lu­ded that the US phar­ma­ceu­ti­cal industry is marketing-driven rather than “life-saving”.

And adding fuel to the fire: most doc­tors believe every thrust of that mar­ke­ting. I recently par­ti­ci­pa­ted in com­ments with other won­der­ful patients in res­ponse to a DO/Endocrinologist, Dr. Tho­mas Repas, who has clearly bought the Big Pharma mar­ke­ting when it comes to levothy­ro­xine. You can read his posts and our com­ments here, here, and here.   Dr. Repas is exactly the kind of doc­tor who has  sta­rred in our horror movie, and the kind of doc­tor that patients have lamen­ted about for years.  Read the  Give Me a Break list of com­ments made by doc­tors, as well as further com­ments on the January 1^st blog.

But Dr. Repas is in good com­pany. Doc­tors have belie­ved the Big Pharma lie about T4-only medi­ca­tions, and against desic­ca­ted thy­roid like Armour, Natu­reth­roid, etc. for 50 years.  In the patient-to-patient  Stop the Thy­roid Mad­ness book, you can read about the first table­ting of Synth­roid in 1955 and the stra­te­gic and suc­cess­ful pro­mo­tion of T4-only, in spite of the fact that T4 was known to be uns­ta­ble for decades.

And today, more than 50 years later, very few of us have been untouched by the Big Pharma push for levothy­ro­xine T4-only treat­ment.  My own mother was suc­ke­red, and I was suc­ke­red.  And until patients star­ted to make a huge push for desic­ca­ted thy­roid treat­ment the last few years, nearly every sin­gle doc­tor around the world had been suckered.

We still have a way to go. But we’ll get there, bit by bit.

In honor of 2009,  a year we hope to see bold chan­ges in the medi­cal sys­tem, Stop the Thy­roid Mad­ness pre­sents the Fif­teen Most Anno­ying Phra­ses From the Mouths of Doc­tors. (Note that the word “Armour” has been used for sim­pli­city sake; any prescription-grade desic­ca­ted thy­roid pro­duct can be inser­ted there.)

Here’s rai­sing our New Year’s stem­med glas­ses to change!

15) I’ll see you in eight weeks.
14) Here’s a script for [insert any non-thyroid medi­ca­tion to ban­daid con­ti­nuing hypo symp­tom]
13) The free T3 lab test is not neces­sary.
12) Your symp­toms do not warrant a thy­roid medi­ca­tion.
11) You’re tired because you are [insert any label like “a mother” “meno­pau­sal”, etc]
10) That has nothing to do with your thy­roid.
9) I can find nothing wrong with you.
8 ) You need to eat less and exer­cise more.
7) Your TSH is too low.
6) The TSH test is [insert any posi­tive desc­rip­tion, like “a relia­ble mar­ker” or “sen­si­tive mea­sure”]
5) I do not believe in Armour.
4) Armour is [insert any nega­tive adjective/description like “uns­ta­ble” or “hard to regu­late”]
3) You’re depres­sed.
2) You are hyper.

.…and tah-dah, the #1 most anno­ying phrase that comes out of the mouth of a doctor:

1) You are normal.