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UK’s Royal College of Physicians continues to be deaf, blind and royally dumb.

throwingup1

Funny how things work. I had been won­de­ring what the heck was going on with thy­roid patients in the UK after the Royal College of Phy­si­cians (RCP) came out with their February 6th gui­de­line sta­ting that 1) thy­ro­xine was the only medi­ca­tion nee­ded for hypothy­roi­dism, 2) “natu­ral” medi­ca­tions were dan­ge­rous and 3) the only labs nee­ded are the TSH and T4.

All the above goes totally against the life-changing expe­rience of a gro­wing body of patients.

Equally a part of this B-grade horror movie is the stand taken by the Bri­tish Thy­roid Asso­cia­tion (BTA).  Read it. And UK-TPA thy­roid patient advo­cate Sheila Tur­ner began to go through her own hell when her Armour was taken away, which you can read about in the February 20th blog post here.

And sud­denly, I get an email from Sheila, infor­ming me that the RCP stand is as bad as it was three months ago for her and other thy­roid patients.

Sheila sta­tes: This is abso­lu­tely unbe­lie­va­ble that out of the hun­dreds of refe­ren­ces we sent to the Royal College of Phy­si­cians to show their gui­de­line to be fla­wed, they have taken no account of one sin­gle one of them. They are publishing their pre­vious gui­dance without one since change. The world has gone mad.

Dear Sheila, Further to my email of 6 April, the com­ments and mate­rials recei­ved by the College have been revie­wed. This posi­tion sta­te­ment or gui­dance (not a gui­de­line) was pro­du­ced on behalf of the Royal College of Phy­si­cians, in par­ti­cu­lar its Patient and Carer Net­work and the Joint Spe­cialty Com­mit­tee for Endoc­ri­no­logy and Dia­be­tes; the Asso­cia­tion for Cli­ni­cal Bioche­mistry; the Society for Endoc­ri­no­logy; the Bri­tish Thy­roid Asso­cia­tion; the Bri­tish Thy­roid Foun­da­tion Patient Sup­port Group and the Bri­tish Society of Pae­dia­tric Endoc­ri­no­logy and Dia­be­tes and is endor­sed by The Royal College of Gene­ral Prac­ti­tio­ners. The Pre­si­dent has asked me to let you know that this review has not resul­ted in any chan­ges to that sta­te­ment.  It should be noted that it is about the treat­ment of pri­mary hypothy­roi­dism and does not prec­lude other treat­ments for excep­tio­nal cases by spe­cia­list endoc­ri­no­lo­gists who can make clear to patients any asso­cia­ted risks. Refe­ren­ces sup­por­ting the sta­te­ment are lis­ted below. Yours sin­ce­rely, Catha­rine Perry Admi­nis­tra­tor •   Diag­no­sis and treat­ment of pri­mary hypothy­roi­dism. BMJ 2009;338:b725 •   Vaidya B, Pearce S. A Cli­ni­cal Review of the mana­ge­ment of hypothy­roi­dism in adults. BMJ 2008;337:a801. This con­tains refe­ren­ces for 35 artic­les and sta­tes that Armour thy­roid is of no pro­ved addi­tio­nal bene­fit to levothy­ro­xine. • The Lan­cet Volume 363, Issue 9411, Pages 793 — 803, 6 March 2004.  This covers the his­tory, epi­de­mio­logy, pathophy­sio­logy, and cli­ni­cal diag­no­sis and mana­ge­ment of hypothy­roi­dism and is writ­ten by Caro­line GP Roberts and Paul Laden­son of Johns Hop­kins Uni­ver­sity School of Medi­cine, Bal­ti­more, USA.  This review, which refe­ren­ces 164 cli­ni­cal artic­les, sta­tes that the treat­ment of choice for hypothy­roi­dism is levothy­ro­xine sodium (thy­ro­xine) and does not refer to Armour thy­roid. •  Baloch Z, Cara­yon P, Conte-Devolx B, et al. Labo­ra­tory medi­cine prac­tice gui­de­li­nes. Labo­ra­tory sup­port for the diag­no­sis and moni­to­ring of thy­roid disease.Thyroid 2003;13:3 – 126. •  Asso­cia­tion of Cli­ni­cal Bioche­mists BTA, Bri­tish Thy­roid Foun­da­tion. UK Gui­de­li­nes for the use of thy­roid func­tion tests. http://acb.org.uk/docs/tftguidelinefinal.pdf •  Surks MI. Ortiz E, Daniels GH, et al. Subc­li­ni­cal thy­roid disease: scien­ti­fic review and gui­de­li­nes for diag­no­sis and mana­ge­ment. 2004;291:228 – 238.

And as your peruse the six refe­ren­ces above which they use to defend their tunnel-visioned, moro­nic posi­tion, you rea­lize that you, your words, and your positive-outcome expe­rience on desic­ca­ted thy­roid, as well as the use of far bet­ter labs, is about as impor­tant within the UK’s latest medi­cal pro­noun­ce­ment as is dirt on the bot­tom of a rus­ted buc­ket in the middle of an empty field in nowhere. Yup.

Or as Harold Ship­man sta­ted about the RCP’s gui­de­li­nes: What a bri­lliant wheeze.

******************************************

See below on the poten­tial impor­tance of potas­sium in your health and well-being. And on the May 7th post about the party being over with Forest Phar­ma­ceu­ti­cals, com­ments con­ti­nue to come in about expe­rien­ces with the “new” Armour.


  • Want to keep track of these “fringe web­site” blog posts? ;-) Curious what’s on Janie’s mind? Use the noti­fi­ca­tion on the lower left of the links, called a News­let­ter, or an RSS Feed.
  • The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! Great BUMPER STICKERS, too. Spread the word – YOU may make a dif­fe­rence in someone’s life.
  • Check out the patient-to-patient book with even more detail (and which doc­tors seem to res­pect more than websites).
  • Need to unders­tand all your best options for thy­roid treat­ment? Go here.
  • Keep infor­med of each live Thy­roid Patient Com­mu­nity Call on Talkshoe by sig­ning up as a follo­wer.

Dr. Richard B. Gutler’s comment is disgusting!

shameonyou And again, on the heels of my post below about Sheila Tur­ner of the UK’s TPA (be sure and read it – good com­ments, too) comes a blog post by Dr. Richard B. Gut­ler of Cali­for­nia, an Endoc­ri­no­lo­gist (why are we not sur­pri­sed).  And his message?

1) That the NHS is correct to ban Armour

2) That Armour is a “second drug” that cau­ses harm.

3) That it’s only “fringe” patients who don’t do well on T4

4) That none of the above patients are hypothyroid

5) That they don’t feel well on T4 because of other reasons

6) The­rapy is not nee­ded if the TSH is below 10

You know what patients have a fan­tasy about, Dr. Gut­ler?? That folks like YOU become hypothy­roid and are put on T4. You’ll then have to eat dirt as you see your blood pres­sure rising, or your cho­les­te­rol doing the same, or depres­sion and fati­gue set­ting in, or your adre­nals over­wor­king, or weight gain and a host of other con­ti­nuing symp­toms of hypothy­roid while on T4. OH WAIT. Those are all due to something else. Gee, let’s put you on anti-depressants, sta­tins, blood pres­sure meds, pain meds, anti-anxiety meds since those “other” rea­sons never seem to be fixed.  OH WAIT. They DO get fixed when these same patients are switched to Armour or any other desic­ca­ted thy­roid, and have addres­sed their low cor­ti­sol or low ferri­tin thanks to years of undiag­no­sis or under­treat­ment with T4.

SHAME ON YOU.

p.s. It’s because of opi­nions like yours that the Stop the Thy­roid Mad­ness book has been sent to patients in over 16 coun­tries, so far. Peo­ple want to find out the TRUTH.

Update: you can read Sheila’s and UK-TPA’s res­ponse here: http://www.stopthethyroidmadness.com/uk-tpas-response-to-the-rcp/

See more from Sheila that gives UK patients hope: http://www.stopthethyroidmadness.com/relationship-between-the-RCP-and-MHRA/

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


  • Want to keep track of these “fringe web­site” blog posts? ;-) Curious what’s on Janie’s mind? Use the noti­fi­ca­tion on the lower left of the links, called a News­let­ter, or an RSS Feed.
  • The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! Great BUMPER STICKERS, too. Spread the word – YOU may make a dif­fe­rence in someone’s life.
  • Check out the patient-to-patient book with even more detail (and which doc­tors seem to res­pect more than websites).
  • Need to unders­tand all your best options for thy­roid treat­ment? Go here.
  • Keep infor­med of each live Thy­roid Patient Com­mu­nity Call on Talkshoe by sig­ning up as a follo­wer.

A real life horror movie: suckered by Big Pharma marketing. Part 2

(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 1st 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.


  • Want to keep track of these “fringe web­site” blog posts? ;-) Curious what’s on Janie’s mind? Use the noti­fi­ca­tion on the lower left of the links, called a News­let­ter, or an RSS Feed.
  • The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! Great BUMPER STICKERS, too. Spread the word – YOU may make a dif­fe­rence in someone’s life.
  • Check out the patient-to-patient book with even more detail (and which doc­tors seem to res­pect more than websites).
  • Need to unders­tand all your best options for thy­roid treat­ment? Go here.
  • Keep infor­med of each live Thy­roid Patient Com­mu­nity Call on Talkshoe by sig­ning up as a follo­wer.

Fifteen Most Annoying Phrases ever to come out of a doctor’s mouth

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.


  • Want to keep track of these “fringe web­site” blog posts? ;-) Curious what’s on Janie’s mind? Use the noti­fi­ca­tion on the lower left of the links, called a News­let­ter, or an RSS Feed.
  • The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! Great BUMPER STICKERS, too. Spread the word – YOU may make a dif­fe­rence in someone’s life.
  • Check out the patient-to-patient book with even more detail (and which doc­tors seem to res­pect more than websites).
  • Need to unders­tand all your best options for thy­roid treat­ment? Go here.
  • Keep infor­med of each live Thy­roid Patient Com­mu­nity Call on Talkshoe by sig­ning up as a follo­wer.

Doctors still have a long way to go a.k.a. Those symptoms might just be the thyroid!

Just as I was finishing up the post below about a short sum­mary on the Endoc­ri­no­logy Today web­site, I saw a link at the bot­tom of the page that inte­res­ted me.  It took me to a blog post on the same site from Decem­ber 10th tit­led “Why can’t it be my thyroid?”.

And a slew of thy­roid patients around the world, as well as a gro­wing body of doc­tors,  would com­ple­tely disa­gree with this post.

Namely, a DO explains the pro­blem of patients arri­ving in doc­tors offi­ces with “innu­me­ra­ble pos­si­ble symp­toms of hypothy­roi­dism” inc­lu­ding “fati­gue, cold into­le­rance, dec­rea­sed energy, weight gain, depres­sion, hair loss, low libido, mens­trual irre­gu­la­rity and others.”

Yet, he bemoans, these patients have a “nor­mal TSH” which is “well within the nor­mal labo­ra­tory refe­rence range.” He also refers to their nor­mal free T3 and free T4, and sta­tes there is no his­tory to sug­gest pitui­tary dys­func­tion or that the TSH is unreliable.”

He then pro­ceeds to pat him­self on the back because he 1) will treat some patients with a high-normal TSH and other cli­ni­cal fea­tu­res,  2) he will treat to a low-normal TSH of less than 2.0, but like the good-boy-doctor, “still within the nor­mal labo­ra­tory refe­rence range” and 3) he will not induce iatro­ge­nic hyperthy­roi­dism, even if symp­toms per­sist. (yikes)

“Iatro­ge­nic hyperthy­roi­dism”??  Since “iatro­ge­ne­sis” refers to harm­ful medi­cal pro­ce­du­res, he’s pro­bably refe­rring to a TSH below the range, which in his mind, equa­tes to hyperthyroidism.

***Then comes the obser­va­tion that has made many thy­roid patients shi­ver, since so many doc­tors have said it: because he feels that adding T3 to T4 has more nega­tive results than posi­tive, he explains to his patients that there may be cau­ses of their symp­toms besi­des the thyroid.”

THUD.

So here is my 6-point res­ponse to any doc­tor who might share these beliefs:

1) There’s hardly a thy­roid patient around who hasn’t had a so-called “nor­mal” TSH in spite of clear and obvious hypothy­roi­dism.  The TSH lab test fre­quently lags behind what is rea­lity in the body, and has been doing so since it’s crea­tion in the early 1970’s (see Chap­ter 4 in the Stop the Thy­roid Mad­ness book for his­tory).

2) Having a “nor­mal” free T3 and free T4 means nothing. It’s “where” the result falls in that range that means something. i.e. patients all around the world are noti­cing that having a free T3 mid-range or lower in the pre­sence of hypothy­roid symp­toms is usually a BINGO lab result poin­ting to hypothyroidism.

3) Exactly because doc­tors tend to dis­miss clear hypothy­roid symp­toms as “something else” thanks to a lousy TSH refe­rence range, a bur­geo­ning num­ber of thy­roid patients are falling into adre­nal fati­gue with its low cor­ti­sol, which ser­ves to mess them up even more.

4) A huge body of thy­roid patients who are on desic­ca­ted thy­roid hor­mo­nes (aka Armour, Natu­reth­roid, etc), and who finally have a com­plete remo­val of symp­toms with a nor­mal tem­pe­ra­ture and hear­trate, also have a sup­pres­sed TSH lab result, and not one iota of “iatro­ge­nic hyperthyroidism.”

5) When it appears that adding T3 to T4 is having nega­tive effects, the pro­blem is most likely adre­nal fati­gue that needs correc­tion, and/or low ferri­tin, NOT deci­ding that the symp­toms must be from another cause or T3 doesn’t work.

6) “Fati­gue, cold into­le­rance, dec­rea­sed energy, weight gain, depres­sion, hair loss, low libido, mens­trual irre­gu­la­rity and others” may be sha­red in other con­di­tions, but you are most likely mis­sing CLEAR symp­toms of hypothy­roi­dism, both in the undiag­no­sed patient with a so-called nor­mal TSH, or with a patient trea­ted with the lousy thy­ro­xine, which lea­ves most ever­yone with con­ti­nuing hypothy­roid symp­toms.

“I’m sorry. It IS your thy­roid” is exactly what patients need to hear.


  • Want to keep track of these “fringe web­site” blog posts? ;-) Curious what’s on Janie’s mind? Use the noti­fi­ca­tion on the lower left of the links, called a News­let­ter, or an RSS Feed.
  • The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! Great BUMPER STICKERS, too. Spread the word – YOU may make a dif­fe­rence in someone’s life.
  • Check out the patient-to-patient book with even more detail (and which doc­tors seem to res­pect more than websites).
  • Need to unders­tand all your best options for thy­roid treat­ment? Go here.
  • Keep infor­med of each live Thy­roid Patient Com­mu­nity Call on Talkshoe by sig­ning up as a follo­wer.
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