desiccated thyroid tags

(Mon­day April 5^th Postsc­ript to my blog post below: One of the patients inter­vie­wed by this repor­ter sta­tes the follo­wing: The report left the impres­sion that we (desic­ca­ted thy­roid users) are a teeny little group on the frin­ges of medi­cine, rather than a ground swell of well researched patients trying to improve our health (and every aspect of our lives) with ratio­nal, com­mon sense alter­na­ti­ves. We are still voi­ces crying in the wil­der­ness, and igno­red by the mains­tream medi­cal pro­fes­sio­nals. C’est la vie.)

Finally.

After years of near-complete silence by the mass media about the pro­found 60-year medi­cal scan­dal of T4-only treat­ment like Synth­roid, as well as lives chan­ged due to natu­ral desic­ca­ted thy­roid, we have some pro­gress.

A few weeks ago, I was con­tac­ted by health repor­ter Pau­line Dakin of CBC (Cana­dian Broad­cas­ting Cor­po­ra­tion) Radio. She was pre­pa­ring a report on thy­roid treat­ment and desic­ca­ted thy­roid, asking for names of Cana­dian patients and doc­tors who might speak of their own expe­rien­ces. Among others, I got her in touch with Cana­dian thy­roid patient The­resa Roberts, who has remin­ded me of this report.

And, Pau­line Dakin’s report on desic­ca­ted thy­roid will be pre­sen­ted TODAY, Eas­ter Sun­day, on CBC Radio One on “The World This Wee­kend” at 6:00 pm Eas­tern Time (5 pm Cen­tral, 4 pm Moun­tain and 3 pm Paci­fic). It’s a com­prehen­sive 1/2 hour news pro­gram that airs natio­nally on wee­kend eve­nings and takes an in-depth look at current issues.

And even if you aren’t in Canada, you can lis­ten to this pro­gram on CBC Radio One live at http://www.cbc.ca/worldthisweekend/ , or you can down­load the pod­cast (which may require free subscription).

HIGH FIVE to Pau­line Dakin and the Cana­dian Broad­cas­ting Corporation.

The 60-year use of T4-only medi­ca­tions like Synth­roid, Levoxyl, Eltro­xin and other brands has NOT wor­ked for hun­dreds of millions world­wide, resul­ting in each patient’s amount and degree of lin­ge­ring symp­toms of hypothy­roi­dism as well as the added misery of adre­nal fatigue.

We have also been ban­dai­ded with anti-depressants, sta­tins, pain meds, high blood pres­sure meds and more, all the while being told by our clue­less doc­tors that we are schi­zoph­re­ni­cally ’”nor­mal” because the also-lousy TSH test says so.

Or, like my own mother, we have been sub­jec­ted to Elec­tric Shock The­rapy because of depres­sion cau­sed by T4 meds and their ina­de­quate treat­ment.  You can read about my mother here.

Stop the Thy­roid Madness™!

P.S. Sign up for the “news­let­ter noti­fi­ca­tion” of this blog – see right below the links to the left. Or you can use your RSS feed page.

(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!™

Good or inte­res­ting news is kinda slack right now.

But last week, the ombuds­man of the FDA’s  Cen­ter for Drug Eva­lua­tion and Research (CDER), came out with their 2009 report that I found inte­res­ting. The Ombuds­man are those who receive and impar­tially look at any com­mu­ni­ca­tions from patients to the FDA about medications.

On the fourth page, you find this under the hea­ding Drug Shor­ta­ges: Desic­ca­ted Natu­ral Thy­roid does not have FDA appro­val and it’s avai­la­bi­lity became quite limi­ted in 2009. Many con­su­mers com­plai­ned to the ombuds­man because of their pre­fe­rence of desic­ca­ted natu­ral thy­roid as thy­roid repla­ce­ment medi­ca­tion over the FDA appro­ved synthe­tic versions.

Of course, the above gives a poten­tially false impres­sion that the shor­ta­ges were due to the lack of FDA appro­val – and rea­sons for this stu­pi­dity con­cer­ning “FDA-approval” are explai­ned here.

To the con­trary, last years shor­ta­ges may be explai­ned by pro­duc­tion issues with the North Ame­ri­can pro­du­cer of desic­ca­ted thy­roid pow­der, as well as demand being grea­ter than supply thanks to patients fin­ding out about the supe­rio­rity of desic­ca­ted thy­roid over T4-only meds like Synth­roid.  The STTM web­site and book is wor­king, as are nume­rous good patient groups and forums!

But the above reveals that they are hea­ring thy­roid patients speak.

So with this being a somewhat silent period, wai­ting to see when the FDA will require RLC (Natu­reth­roid) to do ridi­cu­lously expen­sive cli­ni­cal trials to prove what patients have already known for 110 years–that desic­ca­ted thy­roid is safe and effec­tive–it can be a GOOD time to con­ti­nue com­mu­ni­ca­tion with the FDA. How? By repor­ting YOUR EXPERIENCE AND PROBLEMS with T4 for their 2010 report next year. i.e. it will serve to cement why so many did call to state their pre­fe­rence. Here’s how:

• Call or fax them and report what hap­pe­ned to you on T4: 1 – 800-332‑1088
• Fill out their form: http://www.fda.gov/downloads/Safety/MedWatch/DownloadForms/UCM082725.pdf and fax or mail to Med­Watch; 5600 Fishers Lane; Rock­vi­lle, MD 20852 – 9787
• Con­tact the FDA rep for your state: http://www.fda.gov/Safety/ReportaProblem/ConsumerComplaintCoordinators/default.htm

If you had depres­sion or other psycho­lo­gi­cal issues while on T4, report it.

If you have rising cho­les­te­rol, low ferri­tin, and/or low B12 because of T4, report it.

If you had dry skin or hair, diges­tive issues, or aches and pains, report them.

If the qua­lity of your life was lowe­red on T4, report it, out­line it, detail it.

If you got adre­nal stress because of being on T4, unders­core that lousy truth to them.

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.