thyroid patient 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.

On the heels of an exce­llent Thy­roid Patient STTM Com­mu­nity Call on iodine with guest Stepha­nie Buist (see below), it was just announ­ced by the Food Stan­dards Autho­rity of Aus­tra­lia and New Zea­land (FSANZ) that Aus­tra­lia will add the mic­ro­nu­trient iodine to bread. New Zea­land already star­ted that prac­tice in Sep­tem­ber of last year. 

The announ­ce­ment men­tions the impor­tance of iodine to thy­roid func­tio­ning, as well as for infant brain and ner­vous sys­tem, both during and after preg­nancy.  For the lat­ter, it sta­tes “Not having enough iodine during preg­nancy and early childhood can cause deve­lop­men­tal delay and lead to reduc­tions in men­tal per­for­mance. This damage prior to 2 – 3 years of age is irreversible.”

Appa­rently, the  soils of Aus­tra­lia and New Zea­land are not too pro­li­fic in iodine, and patient levels have been revea­ling that fact for deca­des. But Stepha­nie Buist, the friendly and know­led­gea­ble owner of the yahoo group Iodine, as well as a thy­roid can­cer sur­vi­vor, sta­tes that even most US soils are beco­ming deple­ted.  It’s not just a pro­blem of the northern US “goi­ter belt”, Europe or Africa anymore.

The impor­tance of iodine goes even farther than thy­roid func­tio­ning, preg­nancy and infant brain deve­lop­ment. It has a key role in breast health, your immune sys­tem, bones, estro­gen meta­bo­lism, lung health, eyes, and can­cer pre­ven­tion. The iodine4health web­site lists many bene­fits as well as areas not unders­tood yet.

How much do we need? Experts like Abraham, Flechas and Browns­tein will empha­ti­cally state that we pro­bably need more than is recom­men­ded.  At least 50 mg of iodine may be neces­sary for awhile to bring your levels back up to healthy amounts, besi­des stop the the side effects of iodine on hashi­mo­tos disease.  i.e. thin­king you are get­ting enough iodine natu­rally from foods, or even from natu­ral desic­ca­ted thy­roid like Natu­reth­roid, Erfa’s Thy­roid, or com­poun­ded, may not be so.

How do you find out if you are iodine defi­cient? Stepha­nie sta­ted on the Com­mu­nity Call that the majo­rity of folks pro­bably are defi­cient. But if you want to be sure, you can do the Iodine Loa­ding Test.

What are good iodine sup­ple­ments? Lugols is an liquid variety, and my hus­band and I per­so­nally use it in our mor­ning juice or Emer­gen C (my hus­band uses Emer­gen C in water since he’s dia­be­tic, and it’s a good way for him to get his Vita­min C).   In pill form is Iodo­ral, deve­lo­ped by Abraham.  You can goo­gle either and find some web­site sour­ces. Also good to take with iodine sup­ple­men­ta­tion is mag­ne­sium, Vita­min C, and sele­nium, which helps with the detox effects.

You can lis­ten to the recor­ding of Stephanie’s and my con­ver­sion on iodine by going to the link below for Epi­sode 5 of the Thy­roid Patient STTM Com­mu­nity Call. (Yes, I will correct the skip­ping you hear in my voice next time.)

Read Diana’s expe­rience with iodine hel­ping her get off desic­ca­ted thy­roid. Not something we can all do, but it hap­pe­ned to her!

*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.

Oh boy! You are invi­ted to a Thy­roid Patient Com­mu­nity Call on your com­pu­ter which will be held each and every Fri­day night for an hour with myself, Janie, as host.  We had the first one last Fri­day and it was fun and infor­ma­tive. No, I didn’t announce it here because I wan­ted to work on any bugs in the sys­tem as we lear­ned to use it.

Here’s a chance to ask ques­tions about shor­ta­ges of desic­ca­ted thy­roid, options to talk to your doc­tor about to treat your hypothy­roi­dism during this shor­tage period, how to find a good doc­tor, and more.

Times are 7 pm Paci­fic, 8 pm Moun­tain, 9 pm Cen­tral and 10 pm Eas­tern. Just go here: http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc

You can make two choi­ces: just lis­ten to the Audio of the pod­cast talk show, or call in. Phone num­ber will be right on the bot­tom.  You can regis­ter with Talk Shoe and pick a user name, or come in as a Guest.

You’ll also note a chat box.  The handy and beau­ti­ful gals Darla and Diane will usually be there to guide you. If you want to line up to talk in the queue, you’ll be asked the topic of your con­ver­sa­tion in the chat box.  As you wait for me to get to you, you’ll be able to hear the talk through your phone, and will need to MUTE your com­pu­ter sound.

You’ll be seeing guests join us, as well, so watch for each Com­mu­nity Call announ­ce­ment on the above link. And even without a sche­du­led guest, you just never know who is going to pop in and chat.

Come join us! And remem­ber: we are all just patients chat­ting with patients. This is not to replace the rela­tionship with your doc­tor in your treat­ment or for treat­ment advice. Stick with your doc­tor for that.

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

* STTM t-shirts are half price! I love sales!

How many doc­tors can I stran­gle with my bare hands?? Grrrrrrrrrrr. 

Today, I am once again appa­lled and sad­de­ned by the end­less body of thy­roid patients who con­ti­nue to plum­met into the abyss of adre­nal fati­gue, day after day after day. And it just never needs to hap­pen if doc­tors would simply pay atten­tion and be infor­med.

Belinda is the per­fect exam­ple. She didn’t par­ti­ci­pate in thy­roid patient groups any­more, living her life hap­pily, because she thought her post-RAI thy­roid treat­ment was under con­trol, being on 2 grains of Armour for a year. But sud­denly, she felt the need to return to her groups and seek feed­back. Because she has become more irri­ta­ble and moody, has a hard time falling asleep, and feels fre­quently anxie­tal. Labs are redone, and she finds her­self with a slightly over-range free T3 and a very sup­pres­sed TSH. Her doc­tor deci­des to lower her thy­roid meds, which in turn impro­ves her insom­nia and anxiety, but weight starts piling on. She’s con­fu­sed and won­ders how she can find her balance bet­ween being on too little with unwel­come weight gain and being on too much with uncom­for­ta­ble anxiety and insomnia.

What Belinda didn’t get, and what her doc­tor didn’t get, is that Belinda had now joi­ned the dubious cama­ra­de­rie of those with adre­nal fati­gue, a need­less con­di­tion of over-stressed and under-functioning adre­nals. As a result, T3 in Armour starts to pool in the blood, cau­sing anxiety, insom­nia, and all sorts of low cor­ti­sol symp­toms. Thy­roid patients just like Belinda have to first dis­co­ver what is going on, then face the com­pli­ca­ted balan­cing act of trea­ting adre­nal fati­gue AND hypothy­roi­dism. And it’s a path that never nee­ded to happen. 

WHAT IS POTENTIALLY TAKING YOU DOWN THE DIRTY-YELLOW BRICK ROAD TO ADRENAL FATIGUE??

1) Being undiag­no­sed, or being dosed by, the faulty TSH lab test and its dubious “nor­mal” range, which will leave you with lin­ge­ring hypothy­roid symp­toms. (Belinda’s 2 grains tells me she was being dosed by the TSH)
2) Being trea­ted by T4-only medi­ca­tions like Synth­roid, Levoxyl, Eltro­xin, et al, which end up tea­sing your adre­nals to work har­der to take up the slack of an ina­de­quate treat­ment.
3) Lowe­ring your expec­ta­tions of what “nor­mal” is. No, it’s not nor­mal to have less sta­mina than others, to be on an anti-depressant to ban­daid your hypo depres­sion, to feel col­der than others, to require fre­quent naps, to feel the need to avoid peo­ple, to be bothe­red by lights or noi­ses, to be told by those you love that you are too defen­sive or over-reactive…and so on. 

I hope anyone rea­ding this comes to an unders­tan­ding that you can­NOT enter your doctor’s office as if you are ente­ring the throne of a god. Your doc­tor, no mat­ter how edu­ca­ted or dedi­ca­ted, may not have a strong unders­tan­ding of the role of adre­nal func­tion in rela­tionship to bad treat­ment via T4-only meds or the TSH lab range. You may have to bring this know­ledge to your doc­tor, or find another one who is either lear­ned, or open-minded. Because your chan­ces of having adre­nal fati­gue are huge if you are on T4, if the TSH is worship­ped by your doc­tor whether on T4 or desic­ca­ted thy­roid, or if you keep wal­king into the doctor’s office and hang your own know­ledge on the hook outside his or her door.

(See Deborah’s story about cea­sing to smoke with adre­nal fatigue)