hypothyroid tags

As a thy­roid patient who was pro­foundly har­med by the use of Synth­roid and Levoxyl in the treat­ment of my hypothy­roi­dism, and as an acti­vist who sees this same harm­ful truth with poten­tially millions of other patients, I find this recent news interesting.

But you gotta won­der if they will be wea­ring noise reduc­tion head­sets and ear plugs…or not…when it comes to the scan­dal of synthe­tic T4-only medi­ca­tions.  Will they?

Just today, the U.S. Depart­ment of Health and Human Ser­vi­ces and the Food and Drug Admi­nis­tra­tion (FDA) announ­ced the Safe Use Ini­tia­tive, “a pro­gram aimed at redu­cing the like­lihood of pre­ven­ta­ble harm from medi­ca­tion use”.

Sta­te­ments I glea­ned from this ini­tia­tive include:

1. Today, tens of millions of peo­ple in the Uni­ted Sta­tes depend on presc­rip­tion and over‐the‐counter (OTC) medi­ca­tions to sus­tain their health — as many as 3 billion presc­rip­tions are writ­ten annually. Too many peo­ple, howe­ver, suf­fer unne­ces­sary inju­ries, even death, as a result of pre­ven­ta­ble medi­ca­tion errors or misuse.

2. Although FDA and many other sta­kehol­ders have been wor­king to improve how the health­care sys­tem mana­ges medi­ca­tion risks in the Uni­ted Sta­tes, it is widely recog­ni­zed that more needs to be done to pro­tect the public from pre­ven­ta­ble harm from medi­ca­tion use.

3. Medi­ca­tions offer great bene­fit, but they come with risks. Whe­ne­ver medi­ca­tions are not used opti­mally, risks of harm can inc­rease significantly.

4. FDA pro­po­ses to iden­tify, using a trans­pa­rent and colla­bo­ra­tive pro­cess, spe­ci­fic can­di­date cases (e.g., drugs, drug clas­ses, and/or the­ra­peu­tic situa­tions) that are asso­cia­ted with sig­ni­fi­cant amounts of pre­ven­ta­ble harm.

This ini­tia­tive is actually far broa­der than what I glea­ned above, and also invol­ves self-abuse, expo­sure of dan­ge­rous medi­ca­tions to chil­dren, dire side effects, and more. Five areas are also spe­ci­fi­cally tar­ge­ted:  Con­su­mer medi­ca­tion infor­ma­tion (CMI), Medi­ca­tion dosing devi­ces, Ace­ta­mi­nophen toxi­city, Alcohol-based sur­gi­cal preps, and Medi­ca­tions in vials. You can read more in the fact sheet.

But if the FDA is going to do their job with this ini­tia­tive, or do their job ove­rall, you have to won­der if they will lis­ten to and inc­lude the pro­blems asso­cia­ted with being trea­ted with a T4-only medi­ca­tion as expe­rien­ced by millions of patients world­wide. Con­ti­nuing symp­toms of hypothy­roi­dism while on this ina­de­quate treat­ment is wides­pread and dama­ging for many, cau­sing hands reaching deep in poc­kets to pay for nume­rous doc­tors appoint­ments, besi­des anti­de­pres­sants, anti-anxiety meds, blood pres­sure meds, sta­tins, cor­ti­sol meds for adre­nal fati­gue, and other medi­ca­tions which we would have never nee­ded, and would have been pre­ven­ta­ble, if we had been on natu­ral desic­ca­ted thy­roid like Natu­reth­roid or Westh­roid in the first place.

Many patients on thy­ro­xine, T4-only medi­ca­tions will also report actual hos­pi­tal visits due to the side effects of a poor treatment.

In other words, thy­ro­xine aka levothy­ro­xine aka T4 treat­ment has been an unsafe and harm­ful treat­ment, cau­sing millions to suf­fer unne­ces­sary inju­ries and side effects for over 50 years of its use­less and popu­lar use.  It fits the Safe Use Ini­tia­tive. Or at the very least, it calls for the FDA to lis­ten to patient expe­rience with this lousy choice to treat hypothy­roi­dism.

Lis­ten to us, FDA. Lis­ten and be wise.

P.S. See the blog post below about a gene­tic rea­son why so many do lousy on T4.

*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 due to demand being grea­ter than supply? Go here.

I once crac­ked open an egg to find it had TWO shells.  And that oddity is equi­va­lent to fin­ding an Endoc­ri­no­lo­gist who sup­ports the use of natu­ral desic­ca­ted thy­roid. 

Voila!! ~~ you can lis­ten and talk to an Endo who does just that on this Thurs­day evening’s popu­lar THYROID PATIENT COMMUNITY CALL on TalkShoe. 

His name is Dr. Gary Pep­per, Board Cer­ti­fied by the Ame­ri­can Boards of Inter­nal Medi­cine, and Endoc­ri­no­logy and Meta­bo­lism and editor-in-chief of metabolism.com.  Besi­des ser­ving many years in dis­tin­guished lea­dership posi­tions, he was selec­ted as one of the top 100 phy­si­cians in New York City by New York Maga­zine and is also a fea­tu­red expert with CNBC and ivi­llage on topics of dia­be­tes and endoc­ri­no­logy. He sta­tes:  Almost daily I reread the words of Sir William Osler: “It’s often more impor­tant to know what sort of per­son this disease has than to know what disease the per­son has.”

i.e. this is one of a rare but gro­wing breed of doc­tors who sup­ports what we as thy­roid patients already know – that desic­ca­ted thy­roid is a five-star hypothy­roid treat­ment and T4-only is about as effec­tive as a dough­nut diet for most. And lo and behold,  Dr. Pep­per is an Endoc­ri­no­lo­gist! Of course, I can give no gua­ran­tees how he is as a doc­tor in his own office, but I do appre­ciate his unders­tan­ding that T4-only treat­ment may not be the best way to treat hypo.

Join us this Thurs­day eve­ning, 6 pm Paci­fic, 7 pm Moun­tain, 8 pm Cen­tral and 9 pm Eas­tern by clic­king on the first link above tit­led Thy­roid Patient Com­mu­nity Call.  When on that page, you’ll also see the exact day and time left before the call. You’ll be able to lis­ten to the call right on your com­pu­ter, or you can dial in and lis­ten on your phone. There is also an option to talk one-on-one live with Dr. Pep­per and Janie.

And remem­ber: neither I or Dr. Pep­per can offer per­so­nal medi­cal advice or pro­vide indi­vi­dual spe­ci­fic coun­se­ling. Those are bet­ween you and your per­so­nal phy­si­cian.

***P.S.  Phar­ma­Ti­mes this month repor­ted that this quarter’s sales of  Synth­roid (levothy­ro­xine) were up 3.7% to $134 million by Abbott Labs. Sad for most of those patients. If you know of someone who has been put on a T4 med, send them here: www.stopthethyroidmadness.com/t4-only-meds-dont-work or to the audio page here: www.stopthethyroidmadness.com/audio-shorts (third one down).

*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 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!

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

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.

Just when you think we’re full of great infor­ma­tion for bet­ter thy­roid care, there’s still more to learn and find out.  Below is infor­ma­tion that you might find inte­res­ting on STTM.

ADRENALS: For those who dis­co­ve­red via the 24 adre­nal saliva test that they nee­ded cor­ti­sol sup­port, we have come to rea­lize that some can’t do the ram­ping up sche­dule from a small amount to a lar­ger amount without having pro­blems from the feed­back loop.

Ins­tead, many simply need to “start” on the higher amount, which would range from 20 – 30 mg. You can read about that on the How to Treat page, and you’ll note that not one mor­ning amount goes higher than 10 mgs.  With the excep­tion of men, higher than 10 mg seems to sup­press the ACTH and adre­nals too much.

A NEW LOOK: To make the STTM home page more unders­tan­da­ble to new­co­mers, the home page has bro­ken down the infor­ma­tion bet­ter into sepa­rate pages, and also has a new inte­res­ting way of using it.

LISTEN TO THIS INFORMATION: STTM has short audio clips you can lis­ten to, or send someone else to, to help unders­tand what this is all about.

STORIES OF OTHERS: Indi­vi­dual real-life sto­ries con­ti­nue to come in, pro­ving over and over that this revo­lu­tion for far bet­ter care really does work.

FEEDBACK and MORE FEEDBACK: I get emails daily about lives chan­ged thanks to this patient revo­lu­tion. It’s won­der­ful to see peo­ple fin­ding out WHY they have depres­sion, less sta­mina than others, rising cho­les­te­rol and blood pres­sure, hair loss plus other lin­ge­ring symp­toms of  hypothy­roi­dism left untrea­ted because of the lousy TSH, or under­trea­ted because of the equally-lousy T4-only treat­ment like Synth­roid. I can’t begin to post them all, but STTM does con­tain a sam­pling of this feed­back.

DESICCATED THYROID BRANDS: Wow, the list is gro­wing for desic­ca­ted thy­roid brands around the world! We now have lis­tings for Den­mark, Ger­many, Italy and New Zea­land, as well as more detai­led infor­ma­tion on com­poun­ded thy­roid in Aus­tra­lia. Thanks to all who contributed.

KEEPING UP WITH ADDITIONS TO STTM: In case you didn’t know, there’s a page meant to inform you of what’s added to STTM. I may neglect to list a few addi­tions occa­sio­nally, but think I’m pretty close to get­ting most of them up there.

MEDICAL RESEARCH TO PROVE WHAT WE ALREADY KNOW: Did you know that STTM has a page which com­pi­les research and stu­dies which prove what we as patients already know? It’s not loa­ded with research yet, but it’s gro­wing. And if you have found more to con­tri­bute to that page, use the Con­tact Me form.

SITE MAP: And bot­tom line, you can always go to the Site Map, or review the infor­ma­tion more com­pactly in the book, which patients are taking into their doc­tors offices.

*Want to be infor­med of these blog posts? Curious what’s on Janie’s mind? Use the Noti­fi­ca­tions on the left at the bot­tom of the links.

*Stop the Thy­roid Mad­ness T-shirts are now 50% off! I like sales, don’t you? And by wea­ring these shirts, you’ll never know what seed you put in the mind of someone wal­king past you who’s still on Synth­roid or any other T4 meds, and doesn’t know WHY they have depres­sion, rising cho­les­te­rol, easy weight gain, the need for naps, etc. You”ll also find humo­rous bum­per stic­kers which defi­ni­tely spread the word.

Armour desic­ca­ted thy­roid by Forest Phar­ma­ceu­ti­cals used to be easy to do sublin­gually, even if the offi­cial line was they didn’t make it that way.

And patients liked that sublin­gual abi­lity with Armour.  It allo­wed them to work around the pro­blem of swa­llo­wing desic­ca­ted thy­roid seve­ral hours from having swa­llo­wed iron, estro­gen or cal­cium – all which can bind some of the thy­roid hor­mo­nes in your stomach.

It also hel­ped those with diges­tive issues, glu­ten into­le­rance or Celiac (a com­mon pro­blem for some hypothy­roid patients) by bypas­sing the stomach.

But with the newly for­mu­la­ted Armour in 2009, it became dif­fi­cult. The pill is har­der with less dex­trose and more cellu­lose.  It now fell into the ranks of all other desic­ca­ted thy­roid pills, inc­lu­ding Natu­reth­roid and other good brands, as a more dense tablet.

But no mat­ter what brand you use (espe­cially the gro­wing group of patients who are having their doc­tors switch them to Natu­reth­roid), below are tips from patients on how to con­ti­nue doing your desic­ca­ted thy­roid sublin­gually. Let your doc know, too.

1) Try adding a touch of the con­tents of a Pixie Stix under your ton­gue. It’s fla­vo­red sugar in a straw, and the sugar seems to help the tablet dis­solve sublin­gually through tis­sues under the tongue.

2) If you are using sublin­gual B12 lon­zen­ges to treat low B12, try adding it under the ton­gue with your desic­ca­ted thy­roid. The action of the sublin­gual lozenge seems to move over to the thy­roid tablet.

3) Swish warm water in your mouth before you place the tablet under your tongue.

4) Crunch up the desic­ca­ted thy­roid tablet before any of the above and before pla­cing it all under your tongue.

Also note that you can swa­llow your desic­ca­ted thy­roid. You’ll just have to make sure you don’t also have a sto­mach full of iron rich foods or cal­cium, or estro­gen. Gene­rally, it’s best to take your tablet 4 hours from any of the for­mer. P.S. See com­ments below on the newly for­mu­la­ted Armour, and farther down, a post on Naturethroid.

*Have more sublin­gual ideas or expe­rien­ces? Share it in the Com­ments section.

*Want to be infor­med of my blog posts? Curious what’s on my mind? Just use the Noti­fi­ca­tions to the bot­tom left of the links.