• +Audience
• Doctors
• Reverse T3
• adrenal fatigue
• cortisol
• desiccated thyroid
• erfa
• hypothyroidism
• uk

It’s a con­ti­nuing tra­vesty, and you see it in patient groups.

i.e. many patients still find them­sel­ves sick and disa­bled, stum­bling mise­rably from one unin­for­med doc­tor to another…in spite of the won­ders of natu­ral desic­ca­ted thy­roid, the tes­ti­mony of chan­ged lives, the edu­ca­tion of patients thanks to the STTM web­site & book, and a small but gro­wing body of wise doc­tors who seem to be “get­ting it”,

So what’s the pro­blem?? It lays with our doc­tors and the entire medi­cal pro­fes­sion.

1. Heavy-handed con­trol over your medi­ca­tion: You go to pick up your presc­rip­tion, and find your medi­ca­tion has been lowe­red by your doc­tor without your agree­ment or know­ledge, as hap­pe­ned to Terry here (scroll down to find her post).
2. Igno­rance about adre­nal fati­gue and treat­ment: You clearly have an adre­nal pro­blem, and one doc­tor dis­mis­ses its exis­tence, another doc­tor poo-poos the saliva test, another doc­tor tells you cor­ti­sol sup­ple­men­ta­tion is dan­ge­rous, another doc­tor thrusts all his her­bal sup­ple­ments at you, another doc­tor thinks that 5 or 10 mg cor­ti­sol is enough…and on and on and on.
3. Dis­mis­sing the Ferri­tin test: You want to know what your ferri­tin is, but the doctor’s nurse unders­co­res that they’ve already chec­ked your iron levels, so there’s no need for more testing.
4. Dis­mis­sing you: You are wise thanks to rea­ding, researching and living in your own body, yet your doc­tor calls you a pro­ble­ma­tic patient on your charts, dis­mis­ses you, or gets angry.
5. RT3 huh? You have strong sus­pi­cions that your Reverse T3 is too high thanks to adre­nal fati­gue, low ferri­tin, undiag­no­sed glu­ten issues, or other rea­sons, yet this doc­tor refu­ses to test you, that doc­tor says an RT3 excess is rare.
6. Look at me! Look at me! You make an appoint­ment with that great doc who has a fabu­lous website/book and who shouts that he uses desic­ca­ted thy­roid with a big smile…yet any or all of the above and below occurs with him/her or his “trai­ned” associates.
7. Con­ti­nued worship of the TSH lab test:  Too many doc­tors still think the TSH lab test is from God Almighty. So when you finally start to feel well on desic­ca­ted thy­roid with a TSH at zero or below…WHAM…you must lower your meds because you are somehow “hyper” in spite of no symp­toms to match.
8. Phar­ma­ceu­ti­cal addicts: You men­tion your lin­ge­ring hypothy­roid symp­toms, and you are ban­dai­ded with anti-depressants, anti-anxietal meds, sta­tins, BP pills, pain tablets, acid reflux pills, cal­cium for your thin­ning bones…instead of unders­tand that these are ALL side effects of poor treat­ment or undis­co­ve­red issues.
9. The country you live in: The des­pe­ra­tion of UK thy­roid patients is deep thanks to a thy­roid asso­cia­tion and a College of Phy­si­cians which tigh­tens the screws if a doc­tor dares to presc­ribe a life chan­ging medi­ca­tion with T3 in it.  Or just as frus­tra­ting, having a govern­ment which for­bids desic­ca­ted thy­roid to arrive to you in the mail.
10. Refor­mu­la­tions and Big Pharma apathy: Forest Labs tur­ned one of the most popu­lar and effec­tive desic­ca­ted thy­roid brand, Armour, into a pill with too much cellu­lose and too little suc­rose , cau­sing a mas­sive return of symp­toms in many, soo­ner or later. RLC also refor­mu­la­ted their Natu­reth­roid, and though some patients still do well on it, others do mise­rably, and we are left won­de­ring WHAT to take. (Thank God for Erfa’s Cana­dian “Thy­roid”, but will we be able to con­ti­nue with this fabu­lous desic­ca­ted thy­roid product?)

And there are more rea­sons you might want to bring up in the Com­ments part of this post.

So you see, it’s no won­der so MANY patients feel for­ced to self-treat, yet they are also con­dem­ned for doing so. I refuse to con­demn them for exactly the rea­sons above.  Petty. All I ask is that we all try to find a good doc, but it may be quite hard when you con­si­der all the above.

All-in-all, we still have  a way to go, baby, and espe­cially with the doc­tors we try so hard to get help from…but can’t.

P.S. Are you brave? Walk into your doctor’s office with the STTM shirt.

(Side note: I feel so stu­pid. If you have sig­ned up to receive noti­fi­ca­tion of STTM’s blog posts (see sig­nup on left below links), I have inad­ver­tently fai­led to check a par­ti­cu­lar box for the emails to go out. I won’t make that mis­take again. See the two posts below, which you weren’t noti­fied about when they came out. )

I recently chat­ted with Sheila Tur­ner, a thy­roid patient advo­cate in the UK who runs the web­site Thy­roid Patient Advo­cacy – Uni­ted Kingdom.

And she has become abso­lu­tely dis­gus­ted at what is hap­pe­ning in the UK – dis­gus­ted enough to stop being polite and to ask direct and poin­ted ques­tions on the home page of her TPA-UK website.

What spu­rred her tough new stand?  Says Sheila, “The RCP (Royal College of Phy­si­cians), BTA (Bri­tish Thy­roid Asso­cia­tion) et al are doing everything they can to boy­cott all T3 con­tai­ning pro­ducts and their latest ‘Sta­te­ment’ on the diag­no­sis and mana­ge­ment of pri­mary hypothy­roi­dism is ban­ning gene­ral prac­ti­tio­ners from presc­ri­bing T3 at all.”.

And, explains Sheila, it’s got­ten to the point where most any Gene­ral Prac­ti­tio­ner is com­ple­tely afraid to presc­ribe T3 or any T3-containing pro­duct like natu­ral desic­ca­ted thy­roid for fear of being repor­ted. “The ONLY peo­ple allo­wed to recom­mend that T3 be presc­ri­bed are “acc­re­di­ted endoc­ri­no­lo­gists”, says Sheila. (And how many patients have expe­rien­ced how close min­ded Endo’s can be towards desic­ca­ted thyroid.)

And here are her bri­lliant, in-your-face ques­tions with links, which are per­ti­nent for ALL of us, whether in the UK or not:

1. WHY do the GMC, the RCP, the BTA et al. deli­be­ra­tely choose to ignore the scien­ti­fic evi­dence that has been avai­la­ble for over 40 years ?
2. WHY are medi­cal asso­cia­tions igno­ring the 13% fai­lure rate of T4-only the­rapy for the past 50 years? Why are patient’s com­plaints dis­mis­sed?
3. WHY has there been no correc­tion to the RCP sta­te­ment when there are patients who are coun­te­re­xam­ples to the vali­dity of T4-only therapy?
4. WHY is the con­fu­sion of two defi­ni­tions for ‘hypothy­roi­dism allo­wed to continue?
5. WHY are gui­de­line authorship and con­cise gui­dance to good prac­tice pro­to­cols ignored?
6. WHY are indi­vi­dual symp­toms of hypothy­roi­dism sta­ted to be “non-specific” when Bai­sier found groups of these symp­toms may be quite spe­ci­fic?
7. WHAT further inves­ti­ga­tions for non-thyroidal cau­ses are recom­men­ded as rele­vant to the symp­toms of hypothy­roi­dism when pitui­tary and thy­roid GLAND func­tion tests are bioche­mi­cally nor­mal –  Levels of fT3, rT3 and adre­nal levels?
8. WHY are the stu­dies by Das (2007) and Lewis (2008), which found that patients could be suc­cess­fully trea­ted with thy­roid extract being ignored?
9. WHY is medi­cine igno­ring false nega­tive test results?
10. WHY do doc­tors refuse to explain and/or jus­tify their deci­sions, the­reby withhol­ding infor­ma­tion neces­sary for valid con­sent to treatment?
11. WHY does the NHS refuse to take steps to pro­tect human rights when suf­fe­rers are put at risk through a dis­re­gard of the demand that patients should be trea­ted with fair­ness, res­pect, equa­lity, dig­nity and autonomy?
12. WHY are labo­ra­tory disc­re­pan­cies in serum tes­ting being ignored?

I appre­ciate the tough stand Sheila is taking. We HAVE to take a strong stand in light of the world­wide igno­rance about 60 years of patient suf­fe­ring on T4 meds like Synth­roid, Eltro­xin et al, about bet­ter treat­ment with natu­ral desic­ca­ted thy­roid and T3 pro­ducts, and about the lousy TSH lab test!

In fact, in light of prac­ti­cally NO mass media atten­tion to this huge world­wide thy­roid treat­ment scan­dal, we have to shout it whe­re­ver we can and hope that some WISE repor­ter or media per­so­na­lity gets this and will shine a media light at the idiocy going on out there towards thy­roid patients. Stop the Thy­roid Mad­ness!™

In case you are inte­res­ted, the follo­wing repre­sents Phase 3 of the FDA Trans­pa­rency Ini­tia­tive, which could end up bene­fi­ting thy­roid patients as we deal with the upco­ming cli­ni­cal trials for natu­ral desic­ca­ted thy­roid. The links at the bot­tom give more unders­tan­ding, as well.

For Imme­diate Release: March 12, 2010

FDA Task Force Seeks Public Com­ments on Inc­rea­sing Trans­pa­rency With Regu­la­ted Industry

As part of the final phase of its trans­pa­rency ini­tia­tive, the U.S. Food and Drug Admi­nis­tra­tion is see­king com­ment from the public and other inte­res­ted sta­kehol­ders on how the agency can inc­rease trans­pa­rency in its inte­rac­tions with regu­la­ted industry.

Pos­ted in the March 12, 2010, Fede­ral Regis­ter, the request for elec­tro­nic or writ­ten com­ments has a dead­line of April 12, 2010.

The FDA regu­la­tes pro­ducts res­pon­si­ble for about 25 per­cent of the gross natio­nal pro­duct of the Uni­ted Sta­tes and the indus­tries res­pon­si­ble for these pro­ducts. Pro­ducts regu­la­ted by the agency – bio­lo­gics and blood pro­ducts, human drugs, foods, medi­cal devi­ces, radiation-emitting devi­ces, and vete­ri­nary medi­ci­nes – are inte­gral to public health and to the U.S. economy.

The agency for­med an inter­nal Trans­pa­rency Task Force in res­ponse to the Obama Administration’s com­mit­ment to achieve “an unpre­ce­den­ted level of open­ness in Govern­ment.” The Task Force is deve­lo­ping recom­men­da­tions for making infor­ma­tion about FDA acti­vi­ties and deci­sions more use­ful, unders­tan­da­ble, and rea­dily avai­la­ble, while appro­pria­tely pro­tec­ting con­fi­den­tial information.

The Task Force held public mee­tings in June 2009 and Novem­ber 2009. Based upon input recei­ved thus far, the Trans­pa­rency Ini­tia­tive has been divi­ded into three pha­ses. The first phase, crea­ting a Web-based resource called “FDA Basics” to pro­vide infor­ma­tion on com­monly misun­ders­tood aspects of the agency, has been com­ple­ted. The second phase, impro­ving FDA’s disc­lo­sure of infor­ma­tion to the public, is under­way and the agency intends to issue draft pro­po­sals for public com­ment soon.

The request for com­ment for the third phase follows a series of lis­te­ning ses­sions with mem­bers of regu­la­ted industry in January 2010. Transc­ripts and sum­ma­ries of those lis­te­ning ses­sions are avai­la­ble at http://www.fda.gov/transparency and at http://www.regulations.gov.

For this final phase, the FDA is par­ti­cu­larly inte­res­ted in com­ments from all inte­res­ted par­ties on how the agency can make impro­ve­ments in the follo­wing areas:

• Trai­ning and edu­ca­tion for regu­la­ted industry about the FDA regu­la­tory pro­cess in gene­ral and/or about spe­ci­fic new requirements
• The gui­dance deve­lop­ment process
• Main­tai­ning open chan­nels of com­mu­ni­ca­tion with industry rou­ti­nely and during crises
• Pro­vi­ding use­ful and timely ans­wers to industry ques­tions about spe­ci­fic regu­la­tory issues

Elec­tro­nic com­ments may be sub­mit­ted to http://www.regulations.gov.  Sub­mit writ­ten com­ments to the Divi­sion of Doc­kets Mana­ge­ment (HFA – 305), Food and Drug Admi­nis­tra­tion, 5630 Fishers Lane, Room 1061, Rock­vi­lle, Md., 20852. All com­ments should be iden­ti­fied with doc­ket num­ber FDA – 2009 – N – 0247.

For more information:

• March 12, 2010 Fede­ral Regis­ter Notice
• FDA Trans­pa­rency Task Force Web Page
• FDA Basics Web Page
• FDA Trans­pa­rency blog: http://fdatransparencyblog.fda.gov/2010/03/final-phase-of-the-transparency-initiative-we-want-your-ideas.html
• How did we get to where we are with the FDA’s actions towards desic­ca­ted thy­roid today? Go here.

Now let me start this post by saying that Sena­tor John McCain and Sena­tor Byron Dorgan’s anti-supplement bill…yes, a dim-wit ANTI-supplement bill…was squashed for now because he bac­ked down thanks to plenty of public protest.

And thank God, because it would have espe­cially affec­ted thy­roid patients who have suf­fe­red thanks to Synth­roid or other T4-only meds, and are wor­king dili­gently to regain their health with their free­dom in choice of impor­tant sup­ple­ments, besi­des natu­ral desic­ca­ted thy­roid and T3.  Think sele­nium, iron, B-vitamins, Vit.  D, iodine, Grape Seed Extract, Iso­cort, St. Johns Wort, and a slew of other sup­ple­ments we freely and wisely take to undo the damage done to us by our TSH–and-T4-worshipping medi­cal establishment.

In case you didn’t know, McCain spon­so­red a bill called the The Die­tary Sup­ple­ment Safety Act (DSSA). It would have nulli­fied the pro­tec­tion of sup­ple­ments from the 1994 Die­tary Sup­ple­ment Health and Edu­ca­tion Act (DSHEA). Those pro­tec­ted sup­ple­ments are either those found in food without any che­mi­cal alte­ra­tion, or those sold prior to 1994…i.e. it would somewhat stop the FDA from either ban­ning those kind of sup­ple­ments or rec­las­sif­ying them as “drugs”.  And with the FDA being in a finan­cial bed with Big Pharma, you betcha we would have seen those bans and reclassifications.

And what else might have hap­pe­ned? We would have lost our lower cost, safer, and more effec­tive alter­na­tive to side-effect drugs. I have hel­ped my hus­band lower his high cho­les­te­rol, high LDL and high trigly­ce­ri­des WITHOUT the nasty sta­tins and WITH supplements.

I like how Dr. John C. Lowe put it in his latest news­let­ter:

We appear to have won this time around. But a price we must pay for con­ti­nuing free­dom in our health care choi­ces is to keep our noses in the air. Before long, the stench of Big Pharma’s greed will waft down upon us again in the form of some legislator’s bill. When it does, we must pay another price to keep our free­dom: that is to orga­nize once again and deli­ver a resoun­ding “No!” to Congress.

Want to read more about this?? Just goo­gle “mccain’s sup­ple­ment bill” and get an eye-full.   And I hope to see you res­pond to this post with a list of IMPORTANT and LIFE CHANGING SUPPLEMENTS and how they are hel­ping you.

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Are you from Europe and would like to see your own NTH group?? I’ve just star­ted NTH EUROPE and if you live in Europe, you are invi­ted to join.  Note that new groups can be slow to build, so put your­self on Daily Digest or Indi­vi­dual Emails and watch its growth.  We will be loo­king for level-headed mode­ra­tors and your dona­tion of good Euro­pean infor­ma­tion in the Files and Links.

A large and gro­wing body of hypothy­roid patients have found out the hard way why they have felt like patooey crap for years…or at the very least, why they had pesky lin­ge­ring symp­toms of hypothy­roi­dism:  being on Synth­roid or any other T4-only med.

And the anger many have felt about mis­sed years of our lives because of such a lousy treat­ment has also trans­la­ted to ill fee­lings towards a par­ti­cu­lar phar­ma­ceu­ti­cal: Abbott Labo­ra­to­ries. Abbott Labs has put hun­dreds of millions of dollars in what patients deem “brain­washing” of doc­tors, espe­cially Endo­dri­no­lo­gists, about Synth­roid for years.

But I recently found a little news piece, in the form of the follo­wing video, which at least puts just a slight posi­tive note to the term “Abbott Labo­ra­to­ries”, even if the name con­jurs up a bit of nau­sea in the guts of infor­med thy­roid patients:   http://www.youtube.com/watch?v=O8o-e-iLsUM Hope you enjoy the irony of it the way I did.  lol. Her name was Grace Gro­ner, the sec­ret Millionaire.

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Get­ting older and beco­ming hypothy­roid: Below this post, you’ll see infor­ma­tion that can affect your parents, rela­ti­ves, spou­ses and friends and how they may face the same run-around we have all had to deal with — the lousy TSH lab test, being put on all sorts of band-aid drugs like sta­tins, anti-depressants, blood pres­sure meds and more, or being put on a T4 med like Synth­roid.  Go here.

FDA and shor­ta­ges: I also men­tion above about a recent sta­te­ment by the FDA:  Forest reports manu­fac­tu­ring issues invol­ving the raw mate­rial and RLC reports inc­rea­sed demand. FDA has not orde­red Forest or RLC to remove these thy­roid (desic­ca­ted) tablets from the mar­ket. A few patients are sus­pi­cious enough of the FDA to feel it means nothing.  Others, and I am one, have honestly felt like we simply had a shor­tage of desic­ca­ted thy­roid, not a cons­pi­racy by the FDA to remove it.  So I found that sta­te­ment con­fir­ming, even if there can be more to the story. But time will tell.

Natu­reth­roid: Here you can read infor­ma­tion about this med retur­ning to phar­ma­cies around the country, and what might have chan­ged in the tablets. Once again, phar­ma­ceu­ti­cals are not telling us what is going on ahead of time, and it’s aggra­va­ting when we dis­co­ver chan­ges in our medi­ca­tions. Thy­roid patients do not care to be trea­ted like buf­foons. I sus­pect that phar­ma­ceu­ti­cals are gui­ded to say so little because of legal advice. It’s still aggravating.

Why do I rarely men­tion Armour any­more? Because it doesn’t seem worth my time since it was refor­mu­la­ted. Too many patients con­ti­nue to report lin­ge­ring symp­toms, even occu­rring months after they thought they were doing great on it.  And too many report that after they switched to Erfa’s “Thy­roid”, Natu­reth­roid or com­poun­ded with aci­dolpho­lus as a filler,  they saw a reso­lu­tion of those lin­ge­ring symptoms.

Another rea­son to improve your Vit. D levels: Research shows that low levels of Vit. D in your blood can result in inc­rea­sed fat depo­sits around your waist and other areas.  From the Dia­be­tes Jour­nal.