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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.

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. )

The topic of iodine sup­ple­men­ta­tion for your ove­rall health has been gro­wing the past few years among patients, espe­cially in light that many of us may be low in iodine, or just the fact that iodine has anti-cancer qua­li­ties. I became inte­res­ted in the topic after rea­ding Dr. David Derry’s book Breast Can­cer and Iodine. I’ve also seen the tes­ti­mony of seve­ral women with Fibrocys­tic Breast Disease who saw it disap­pear once they star­ted iodine sup­ple­men­ta­tion. Impressive!

And since thy­roid hor­mo­nes are pri­ma­rily com­po­sed of iodine, thy­roid patients are lis­te­ning to and ques­tio­ning the use of iodine sup­ple­men­ta­tion. Yahoo Groups has an exce­llent iodine group now led by Stepha­nie, where you can ask ques­tions and decide for your­self. Also, if you goo­gle “iodine”, you’ll find much to read. 

But thy­roid patient Mike Law­son came up with some very inte­res­ting facts this week about iodine in desic­ca­ted thy­roid – just one more rea­son to con­si­der using Armour, Natu­reth­roid, Westh­roid or other desic­ca­ted thy­roid pro­ducts! He figu­red out the below: 

T3 = C15H12I3NO4 = molar mass of 650.9776
T4 = C15H11I4NO4 = molar mass of 776.87

So, each grain of Armour has 30.20325 mcg iodine. In other words, each
grain of Armour has 1/5 the RDA of iodine (150 mcg).

Very inte­res­ting facts, Mike! Sure, some thy­roid patients feel they need more than what desic­ca­ted thy­roid offers. But it’s a good start when so many indi­vi­duals feel their own iodine levels are too low, and need help, espe­cially those who have had to deal with thy­roid or breast can­cer, or have a family his­tory of it. 

On Thurs­day night, Nov. 2^nd, 2006, I was concerned. 

NBC News had a short seg­ment by Robert Bazell, their Chief Science and Health Corres­pon­dence. And Mr. Bazell and NBC news announ­ced that there’s a “mys­tery ill­ness that afflicts more than one million peo­ple in the Uni­ted Sta­tes, espe­cially women”. And they con­fir­med that the govern­ment (Cen­ters for the Disease Con­trol aka CDC) is telling doc­tors: it’s real. And it’s called Chro­nic Fati­gue Syn­drome.

It’s real?? Yes, I KNOW that unre­len­ting and debi­li­ting fati­gue is real. I know that those who live under the clas­si­fi­ca­tion of CFS have debi­li­ta­ting symp­toms which can inc­lude inca­pa­ci­ta­ting fati­gue. I know symp­toms can be varia­ble, indi­vi­dual, and fluc­tuate in seve­rity, and that friends and family may not really get how sick they are. I have also lived with chro­nic, debi­li­ta­ting fati­gue, as have millions of others whether they were clas­si­fied with it or not. But to say that it’s a mys­te­rious ill­ness highly con­cerns me.

Now gran­ted, I have had a proc­li­vity to give the bene­fit of the doubt for a LONG time. For years, I have lis­te­ned to the symp­toms of CFS with open­ness and great sym­pathy. I lis­te­ned when I read that small out­breaks of simi­lar fati­gue disor­ders have been desc­ri­bed in the medi­cal lite­ra­ture since the 1930s. I lis­te­ned when in the 1980’s, they asso­cia­ted it with Eps­tein Barr Virus, and later to a much wider cause and effect. I lis­te­ned when the term CFS was clas­si­fied in 1988 even without spe­ci­fic cause or mar­ker. I lis­te­ned when Mayo Cli­nic sta­ted that CFS was a “com­plex disor­der”. I have lis­te­ned when Geor­ge­town Uni­ver­sity Medi­cal Cen­ter sta­ted that “chro­nic fati­gue syn­drome (CFS) may be roo­ted in dis­tinct neu­ro­lo­gi­cal abnor­ma­li­ties that can be medi­cally tes­ted” and may be a “legi­ti­mate, neu­ro­lo­gi­cal disea­ses and that at least part of the patho­logy invol­ves the cen­tral ner­vous sys­tem.” I also lis­te­ned when CDC sta­ted that CFS was “unex­plai­ned fati­gue of grea­ter than or equal to six month’s duration.”

But there are also other facts that make the above infor­ma­tion suspect. 

1) Chro­nic Fati­gue Syn­drome as the label for a mys­te­rious disor­der see­med to make it’s appea­rance within the decade after the lousy but highly acc­lai­med TSH lab test was crea­ted in the mid-1970’s, and during a time when most all patients had been switched from the suc­cess­ful desic­ca­ted thy­roid to thyroxine-only treatment…both facts which patients now know have been huge fai­lu­res in the treat­ment of hypothyroid.

2) Most of the symp­toms lis­ted as belon­ging with CFS are the VERY same symp­toms repor­ted by patients who were on ina­de­quate T4-only medi­ca­tions and who were dosed by the TSH. Also, those are the same symp­toms that other patients had when they were told they had NO thy­roid pro­blem (due to ina­de­quate tes­ting and eva­lua­tion of those tests). Addi­tio­nally, all the symp­toms were era­di­ca­ted when the patient was opti­mally trea­ted on Armour.

3) Many of the symp­toms lis­ted as being those of CFS are the exact same symp­toms rela­ted to having low func­tio­ning adre­nals—a VERY com­mon con­di­tion that accom­pa­nies hypothy­roid is a large majo­rity of hypothy­roid patients, and which doc­tors ROUTINELY know NOTHING about. For exam­ple. the follo­wing symp­toms are lis­ted as CFS symp­toms, but are ALSO symp­toms that hypothy­roid patients with low cor­ti­sol often have: aller­gies and sen­si­ti­vi­ties to noise/sound, fain­ting, fever, diz­zi­ness, balance pro­blems, night sweats, sen­si­ti­vity to light, anxiety, panic attacks, per­so­na­lity chan­ges, mood swings, unre­freshed sleep…and others.

I am BOTHERED BY THE SIMILARITIES!! 

I am bothe­red by the fact many hypothy­roid patients who come onto the many Yahoo and other talk sites state they had the diag­no­sis of Chro­nic Fati­gue Syn­drome when they once were on T4-only medi­ca­tions and were dosed by the TSH. 

I am bothe­red when CFS is clas­si­fied as a “real ill­ness” when these very same patients on these sites lose ALL those symp­toms when they dose high enough with desic­ca­ted thy­roid, ignore the TSH and ins­tead, dose by the free T4 and free T3, and/or treat their low cor­ti­sol if it’s con­fir­med to exist. 

I am bothe­red by the fact that many CFS suf­fe­rers are told they have no thy­roid pro­blem, when in fact, the hypothyroid-free diag­no­sis is usually based on very lousy labs called the TSH and T4…and often with no thy­roid anti­bo­dies labs, which doc­tors rou­ti­nely state is “unne­ces­sary”. And if the doc­tor did do a free T3, he proc­lai­med the patient “nor­mal” just because the num­ber was “in range”. We, as thy­roid patients, have lear­ned that “in range” means squat.

I am bothe­red by the fact that seve­ral lis­ted CFS symp­toms are also those of low Ferri­tin, which leads to ane­mia, and which is a com­mon con­di­tion with hypothy­roid patients. 

Now in all due res­pect to patients who have the diag­no­sis of CFS, or those who suf­fer from debi­li­ta­ting fati­gue – I have been there. I know there are REAL disea­ses which pro­duce REAL fati­gue that may or may not be rela­ted to having a disea­sed thy­roid. I once had acute Eps­tein Barr Virus for a full year, and unders­tand the deep misery and debi­li­ta­tion of fati­gue. And I unders­tand that there are other cau­ses for chro­nic fati­gue which inc­lude, but are not limi­ted to, EBV, other viru­ses, ente­ro­vi­ru­ses, retro­vi­ru­ses, Her­pes Viru­ses, Lyme, and Can­dida albi­cans. I can also ascer­tain that some fati­gue has unk­nown causes.

But I am deeply con­cer­ned that the “millions” that CDC is now sta­ting as suf­fe­ring from a “real disease” might in fact con­tain a large body who are suf­fe­ring from UNTREATED HYPOTHYROID due to ina­de­quate tests such as the TSH and T4, or those who are suf­fe­ring from UNDERTREATED HYPOTHYROID due to being on thy­ro­xine medi­ca­tions and being held hos­tage to the TSH, or those who have undiag­no­sed and untrea­ted ADRENAL INSUFFICIENCY, which can only ade­qua­tely be dis­co­ve­red with a 24 hour adre­nal saliva test — and even then with the unders­tan­ding that being “in range” means little.

I want to make it clear that I am not saying that “ever­yone” who is clas­si­fied as having CFS has undiag­no­sed or under­trea­ted hypothy­roid. The world is not that black and white. But I do sus­pect, based on the infor­ma­tion given above, that many in that “millions” pos­sibly DO have undiag­no­sed or under­trea­ted hypothy­roid, and/or adre­nal insufficiency…and have not done the correct tests to con­firm it, and to help RELIEVE them of their misery. The evi­dence is simply too compelling.