thyroxine tags

(This post gar­ne­red a lot of atten­tion, up to FIFTY com­ments just a few hours after it went up. Peo­ple are very inte­res­ted in sha­ring their expe­rien­ces in coping with the shor­ta­ges! See below and add your own.)

This year will go down in his­tory as shoc­kingly mise­ra­ble for enligh­te­ned thy­roid patients on natu­ral desic­ca­ted thy­roid.

First came a refor­mu­la­tion in the most popu­lar brand – Armour by Forest Labs. Patients world­wide in groups and forums repor­ted a serious return of their hypothy­roid symp­toms on this pro­duct. A huge disappointment.

Second came the pro­duc­tion shut­down of the two gene­ric makers of desic­ca­ted thy­roid: Time Caps Labs and Major Phar­ma­ceu­ti­cals. It’s the first step in the FDA’s com­pliance plan to corral all grandfathered-in drugs (drugs already in exis­tence when the the FDA was crea­ted in 1938) and make them each prove the effi­cacy and safety of their medi­ca­tion via very expen­sive cli­ni­cal trials.  i.e. over 110 years of safe and effec­tive use of desic­ca­ted thy­roid is not enough for the FDA?? We are still wai­ting to see the out­come of that plan with RLC  and Forest Labs. – the two who were actually in exis­tence before 1938.

Third came demand being grea­ter than supply and shor­ta­ges. Because of infor­ma­tive patient web­si­tes like Stop the Thy­roid Mad­ness,  Sheila’s TPA-UK, Lyn’s Thy­roi­dUK, Stephanie’s Natu­ral Thy­roid Choi­ces, some areas of about.com (and other good web­si­tes I don’t mean to miss here), plus many fine patient forums and groups,  patients found out why they had con­ti­nuing symp­toms on T4 thy­ro­xine, and demand for natu­ral desic­ca­ted thy­roid grew exponentially.

STTM then crea­ted a list of options for all thy­roid patients until the shor­ta­ges resol­ved them­sel­ves, and also crea­ted CDT (Coa­li­tion for Desic­ca­ted Thy­roid) where patients could dis­cuss alter­na­ti­ves in a sup­por­tive and fac­tual atmosphere.

And we’ve seen some inte­res­ting expe­rien­ces and comments:

The new Armour: One grain tabs star­ted to appear on some phar­macy shel­ves the past month.  Other phar­ma­cies have still been wai­ting.  Many patients appear to have switched to other alter­na­ti­ves, though. One gal still on it feels she is fin­ding suc­cess by adding T3 to the amount of new Armour she is on.  Time will tell if patients can ever find suc­cess with the newly for­mu­la­ted Armour, and most feel it’s a huge loss.

Natu­reth­roid and Westh­roid: Patients repor­ting on their switch to either of RLC Lab’s two iden­ti­cal pro­ducts report doing well, having to raise it slightly or lower it slightly, or just not liking them at all. Others have had a hard time fin­ding it on their phar­macy shel­ves, but have been seeing some appear in the last few weeks.

Erfa’s Thy­roid from Canada: When it became clear that the FDA was allo­wing this exce­llent pro­duct to be ship­ped to patients, many switched and had their presc­rip­tions faxed to a Cana­dian phar­macy. Pri­ces at many of those phar­macy web­si­tes were dou­bled after presc­rip­tions star­ted to come in from the US. Most patient who stuck with it seem to love it, repor­ting you can do it sublin­gually, as well. A few haven’t been impres­sed, but were fin­ding their for­mer suc­cess by rai­sing it.

Com­poun­ded desic­ca­ted thy­roid: In spite of being a more expen­sive option, some patients found suc­cess with this. Others lear­ned they pre­fe­rred the filler to be Aci­dophi­les.  If not the lat­ter, Mic­rocrys­ta­lline Cellu­lose was pre­fe­rred over Methyl Cellu­lose – the lat­ter which appea­red to les­sen the effec­ti­ve­ness of the com­poun­ded thyroid.

Synthe­tic T4 and Synthe­tic T3: some patients switched back to the synthe­tic com­bi­na­tion, but many report that it hasn’t been as effec­tive as desic­ca­ted thy­roid was.

Other options: Patients moved to OTC pro­ducts like Nutri-Meds, etc, which can be much wea­ker. Others sought desic­ca­ted thy­roid from other coun­tries and have found success.

So I’d like to hear from all of you.   Did you go back to synthe­tic T4?  What desic­ca­ted thy­roid did you switch to? What wor­ked and why? What didn’t work for you and why?  What pro­duct do you hope to switch to once you run out of your current meds?

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*Want to be infor­med of these ‘fringe web­site’ blog posts?  Curious what’s on radi­cal Janie’s mind? Just use the Noti­fi­ca­tions on the left below the links.

* The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! I love sales! Spread the word!

* Pre­fer STTM in book form with more detail? You can read about it here.

*Need options for thy­roid treat­ment during the current shor­ta­ges due to demand being grea­ter than supply? Go here.

I con­fess that I hated my Che­mistry class in high school, even if Mr. Bowen tried to make it inte­res­ting and favo­red the girls over the boys in class.  But lo and behold, one of those ele­ments on the Perio­dic Table ended up having a sig­ni­fi­cant role in all or our lives as thy­roid patients: iodine.

Iodine can be found in every inch your body, but is espe­cially pre­va­lent in your thy­roid, which makes it an inte­res­ting ele­ment for those of us with thy­roid disease.  The active thy­roid hor­mone T3 (triio­dothy­ro­nine) is made up of three iodine mole­cu­les, and the sto­rage hor­mone T4 (thy­ro­xine) has four iodine mole­cu­les. In fact, without pro­per amounts of iodine, your thy­roid wouldn’t even func­tion well.

An opti­mal amount of iodine has also been shown to improve breast health, pro­vide can­cer pro­tec­tion, remove toxins like Bro­mide, fluo­ride, mer­cury etc…and in some cases, has hel­ped thy­roid patients either lower their dose, or even get off thy­roid treat­ment. Thy­roid patient Diana tells of get­ting off thy­roid treat­ment due to iodine on the Sto­ries of Others page.

***This Thurs­day eve­ning on the Thy­roid Patient Com­mu­nity Call on TalkShoe, we’ll have guest Stepha­nie Buist, owner of the Yahoo group Iodine and a 9-year thy­roid can­cer sur­vi­vor who strongly feels iodine has been a huge fac­tor.   We’ll explore how much iodine a per­son needs, the loa­ding loa­ding test, the best sour­ces of iodine sup­ple­men­ta­tion, whether you need iodine, as well as con­tro­ver­sies with iodine use, inc­lu­ding Hashi­mo­tos disease or bad reac­tions.  Times for the call are 6 pm Paci­fic, 7 pm Moun­tain, 8 pm Cen­tral and 9 pm Eas­tern. You can lis­ten right on your com­pu­ter, or call to talk directly to Stepha­nie and Janie. Join us!

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Sheila Tur­ner of TPA-UK  (Thy­roid Patient Advocacy-UK www.tpa-uk.org.uk) is star­ting the ball rolling on something very inte­res­ting:  they have con­tac­ted a lab in the UK who will do a qua­li­ta­tive analy­sis of the old Armour vs. the new refor­mu­la­ted Armour to get a break­down of the ingre­dients, and poten­tially give us an idea WHAT is cau­sing thy­roid patients to have a return of their hypothy­roid symp­toms since Forest refor­mu­la­ted Armour in 2009.

Howe­ver, says Sheila, this will cost in the region of £600 to £700 (appro­xi­ma­tely $1100).  Says Sheila, “If there are enough patients who are willing and able to help raise the fun­ding requi­red by giving wha­te­ver we can afford, we could finally get the ans­wer as to which chan­ges have been made in the new for­mula and whether this inc­lu­des chan­ges in the active (as some have sug­ges­ted) and the inac­tive ingre­dients and put this baby to rest once and for all.” 

You can con­tact Sheila at the above web­site and make a pledge.  As I write this, they have already have £100 pledged.

UPDATE: Stepha­nie above has agree to be the ‘Pledge and Money Collec­tor’ for the lab work nee­ded to analyze the old vs new Armour . She can be con­tac­ted at ladybugsandbees@sbcglobal.net

*Want to be infor­med of these ‘fringe web­site’ blog posts?   Curious what’s on radi­cal Janie’s mind? Just use the Noti­fi­ca­tions on the left below the links.

* The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! I love sales!

* Pre­fer STTM in book form with more detail? You can read about it here.

*Need options for thy­roid treat­ment during the current shor­ta­ges. Go here.

Jes­sica Terry is an 18 year old stu­dent at Washing­ton State high school in the Bay Area who had years of pro­blems which doc­tors couldn’t figure out: vomi­ting, diarrhea, weight loss and sto­mach pains.  Doc­tors said she had irri­ta­ble bowel syn­drome or coli­tis, and said her intes­ti­nal tis­sue was just fine accor­ding to slides.

Yet, she just knew that wasn’t correct.

So she took some of her own intes­ti­nal tis­sue to her Bio­me­di­cal Pro­blems class, and voila…she diag­no­sed her own pro­blem:  gra­nu­loma, and spe­ci­fi­cally, Crohn’s disease, an inflam­ma­tion of her intestines.

Sound fami­liar??

Yup, thy­roid patients have had to do the exact same thing – self-diagnose– for almost ten years because of con­ti­nuing symp­toms of hypothy­roi­dism which doc­tors have rou­ti­nely dis­mis­sed, pooh-poohed or bla­med on something else.  It’s all been a horri­fic, wide-reaching and dama­ging 50 year medi­cal scan­dal by the medi­cal esta­blish­ment upon thy­roid patients.

And why has this cala­mity occu­rred? Because doc­tors have always been hood­win­ked by their medi­cal school trai­ning, con­ti­nuing edu­ca­tion and Big-Pharma-financed-research in belie­ving that T4-only thy­ro­xine medi­ca­tions like Synth­roid, Levoxyl, Levothy­ro­xine, Eltro­xin, et. al. were from God Almighty, and the TSH lab test was just as holy.

And thanks to thy­roid patients around the world who had the gall to use the inter­net and join patient groups, we figu­red out it’s all because those medi­ca­tions and lab­work have not wor­ked, and what has wor­ked. Addi­tio­nally, it was patients who dis­co­ve­red they had adre­nal fati­gue and/or low ferri­tin and how to treat it, and patients who have suc­cee­ded in begin­ning a wave of change around the world in the treat­ment and diag­no­sis of hypothy­roi­dism (except for the UK, who has gone back­wards to the dark ages).

You can read Jessica’s story first repor­ted in the Sam­ma­mish Repor­ter,  and only recently repor­ted to a wider audience in the Bay Area News news­pa­per. She also spoke to a CNN affiliate.

Thanks to Kem on NTH for infor­ming me of this news.

P.S. Do ya think that any news­pa­pers or major news out­lets like CNN are going to finally get what a huge story thy­roid patients have given them?? We’re still waiting.…..

*Want to be infor­med of Janie’s blog posts? Curious what’s on her mind? Just use the Noti­fi­ca­tion link to the bot­tom left of the links.

Thy­roid pro­blems have become rampant.

And it’s not just in the US with indi­vi­duals like Oprah, fit­ness guru Jillian Michaels, Sex and the City’s Kim Cat­trall, George and Bar­bara Bush, Kelly Osbourne and others.  A recent article in the Daily Mail-UK high­lights the saga of  Clare Bal­ding, the BBC TV sports pre­sen­ter in the UK whose thy­roid was gladly remo­ved due to a malig­nant tumor.

Even the gal who wrote the well-written article about Clare, Pippa Jolly, reports having gone through the same remo­val 13 years pre­vious due to an extreme case of Hashi­mo­tos and a nodule pres­sing against her trachea.

But within the infor­ma­tive and hope­ful tone of the article are a few Rod­ney Dan­ger­field thuds of the con­ti­nuing SCANDAL and idiocy of a par­ti­cu­lar thy­roid treat­ment which even the most inno­cent of article wri­ters can be fooled.

Thud #1: The very first sen­tence of the article says: Some good news for Clare Bal­ding, the BBC TV sports pre­sen­ter, is that her recent ope­ra­tion to remove her can­ce­rous thy­roid gland — a thy­roi­dec­tomy — should be the end of the matter.

End of the mat­ter? Only if she had been put on desic­ca­ted thy­roid like Natu­reth­roid, et al. Because it appears she’s on the delight­fully enchan­ting synthe­tic “thy­ro­xine”, the dar­ling of most UK doc­tors and which ser­ves to leave almost ever­yone with their own brand and inten­sity of con­ti­nuing hypothy­roid symp­toms.  You can lis­ten to my audio here about T4.

Thud #2: Diag­nos­tic rates are on the inc­rease, says Pro­fes­sor Mon­son, as thy­roid tests are now done rou­ti­nely at GP sur­ge­ries. ‘As a result there is a higher detec­tion rate and the disease can be tac­kled ear­lier and if neces­sary follo­wed up by surgery.

Right. Those inc­rea­sing diag­nos­tic rates, some which are based on the lousy TSH lab test, are ove­rri­dingly catching someone’s hypothy­roid state years after it star­ted, which lea­ves a cer­tain per­cen­tage with the misery of adre­nal insuf­fi­ciency and host of other pro­blems from being undiag­no­sed so long.  And if one is trea­ted after sur­gery based on the same holy TSH, you will only con­ti­nue to have your brand of con­ti­nuing symp­toms. You can lis­ten to my audio on the TSH here.

Thud #3: If the thy­roid is remo­ved or not func­tio­ning pro­perly, thy­ro­xine will need to be taken in drug form for life. 

You and millions of others have been hood­win­ked into thin­king it’s thy­ro­xine you will need the rest of your life, aka Eltro­xine, Synth­roid, or levothy­ro­xine,  et al.  But those T4 meds force you to depend on con­ver­sion alone, a pro­cess not well done in many, and you miss out on what natu­ral desic­ca­ted thy­roid would be giving you as a much wiser treat­ment–exactly what your own thy­roid gives: direct T4, T3, T2, T1 and cal­ci­to­nin. Or even at the VERY least, giving your­self synthe­tic T4 with synthe­tic T3.

Thud #4: Now I have to have my hor­mone levels chec­ked every three months and make sure I take my medi­ca­tion, but other­wise I feel fine. 

I com­ple­tely believe Pippa when she says she feels fine. But I want to warn her:  some CAN feel fine on a T4-only medi­ca­tion, but even­tually and espe­cially as she ages,  she’s going to have to watch out for those pesky little demons of being on an infe­rior, ina­de­quate medi­ca­tion, which can inc­lude rising cho­les­te­rol, chro­nic low-grade depres­sion, rising high blood pres­sure, or a host of other symp­toms which are indi­vi­dual to each per­son on thyroxine.

Here’s hoping Clare and Pippa join the gro­wing body of patients all over the world whose lives are being chan­ged thanks to natu­ral desic­ca­ted thyroid.

*Want to be infor­med of these blog posts? Curious what I’m ran­ting about now? Use the Noti­fi­ca­tions on the lower left of the links. 

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 dim-witted, cuckoo’s– nest February 6^th 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. 

Equally a part of this B-grade horror movie is the three-stooges stand taken by the Bri­tish Thy­roid Asso­cia­tion (BTA).

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 20^th blog post here.

And sud­denly, I get an email from Sheila, infor­ming me that the RCP is as stu­pid as they were three months ago. 

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 IS ABOUT AS IMPORTANT TO MOST PHYSICIANS & ORGANIZATIONS IN THE UK AS IS DIRT ON THE BOTTOM OF A RUSTED BUCKET IN THE MIDDLE OF A 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 7^th post about the party being over with Forest Phar­ma­ceu­ti­cals, com­ments con­ti­nue to come in about expe­rien­ces with the “new” Armour. Have you read the STTM book? Patients are sta­ting they like it even bet­ter than this HUGE web­site. lol.

*Want to be infor­med of my blog posts? Curious what’s on my mind? Use the Noti­fi­ca­tion on the lower left of the links.