hypothyroidism 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 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.

I have been watching with inte­rest the past week about the jus­ti­fied ire of patients being expres­sed all over patient groups in the inter­net. And in case you’ve been too busy with school star­ting or end-of-summer acti­vi­ties, it invol­ves one of the nation’s lar­gest mail order phar­ma­cies as well as the lar­gest Phar­macy Bene­fits Mana­ger (PBM):  Medco.

In a sta­te­ment you can read right on their web­site, they state:

1)  there is a “nation­wide shor­tage of porcine-derived desic­ca­ted thy­roid”
2)  they are “uncer­tain about con­ti­nued avai­la­bi­lity.”
3)  “ask your doc­tor if a synthe­tic thy­roid medi­ca­tion, such as levothy­ro­xine is right for you.”

In Medco’s direct mes­sage to doc­tors, they state;

1)  desic­ca­ted thy­roid does not have the U.S. Food and Drug Admi­nis­tra­tion (FDA)  Fede­ral Drug appro­val”
2)  the FDA  “may remove any remai­ning unap­pro­ved pro­ducts from the mar­ket.”
3)  the shor­tage is due to this “uncer­tainty”.
4) “the Ame­ri­can Asso­cia­tion of Cli­ni­cal Endoc­ri­no­lo­gist recom­mends levothy­ro­xine over desicc­ca­ted thy­roid, lio­trix, com­bi­na­tion of thy­roid hor­mone, or triio­dothy­ro­nine (T3) for the treat­ment of hypothyroidism.”

Cla­ri­fi­ca­tion on their statements

If you are just now fin­ding out about this,  do note the following:

1) There is not a nation­wide shor­tage of all desic­ca­ted thy­roid. There is a shor­tage of Armour because of its 2009 refor­mu­la­tion. (See my blog posts below about pro­blems with the newly for­mu­la­ted Armour.)
2) Natu­reth­roid by RLC Labs con­ti­nues to be avai­la­ble. They are wor­king hard to keep up.  See my post on Natu­reth­roid.
3) Desic­ca­ted thy­roid was around long before the esta­blish­ment of the FDA, so they are grand­fathe­red in and still work with the FDA gui­de­li­nes.
4) There has been no sta­te­ments by the FDA that they are remo­ving desic­ca­ted thyroid. 

An even more impor­tant reve­la­tion in this entire Medco scandal

There is actually an underl­ying mes­sage in the entire Medco fiasco that you should find even MORE dis­tur­bing: the con­ti­nued  pro­mo­tion of T4, aka levoth­ro­xine, as an ade­quate treat­ment of hypothy­roi­dism.  And this is not just a faux pas of Medco, it con­ti­nues to be the igno­rant opi­nion of far too many doc­tors, medi­cal schools and medi­cal boards. All you have to do is look at what has hap­pe­ned in the UK with the Royal College of Phy­si­cians to see the idiocy abounding.

Over 100 years ago, desic­ca­ted thy­roid was found to be an exce­llent treat­ment for hypothy­roi­dism.  I give pre­cise details about the first use of desic­ca­ted thy­roid in Chap­ter 2 in the Stop the Thy­roid Mad­ness book. It worked!

But in the early 1960’s, the tide tur­ned thanks to a batch of desic­ca­ted thy­roid that tur­ned out not to be what it said it was.  This is docu­men­ted in the 1970 Phar­ma­co­lo­gi­cal Basis of The­ra­peu­tics.  And phar­ma­ceu­ti­cals, espe­cially  Knoll Phar­ma­ceu­ti­cals who first table­ted levothy­ro­xine aka Synth­roid in 1955,  jum­ped to pro­mote T4-only as a “new and modern medi­ca­tion”.  (See page 41 and 42 in the STTM book).  And doc­tors and medi­cal schools fell for it hook, line and sinker.

And to this day, levothy­ro­xine con­ti­nues to be pur­por­ted as an accep­ta­ble and logi­cal treat­ment choice for hypothy­roi­dism.  But patients all over the world beg to dif­fer.  T4 medi­ca­tions like Synth­roid, Levoxyl, Eltro­xin, Oro­xine and others simply leave all patients with their own uni­que amount and degree of lin­ge­ring hypothy­roid symp­toms, no mat­ter how high you raise it. 

I also find it hugely dis­tur­bing to refer to AACE (Ame­ri­can Asso­cia­tion of  Cli­ni­cal Endoc­ri­no­lo­gists) as if they are the grand poo­pah of kno­wing what’s right for thy­roid patients. They are NOT.  Millions of thy­roid patients who have switched to desic­ca­ted thy­roid, T3, or a combo of T4 and T3 will tell them hands-down that they have got­ten FAR bet­ter results, and most espe­cially with desic­ca­ted thy­roid like the “old” Armour, and now Naturethroid.

Visi­ting nume­rous thy­roid patient groups will reveal how patients feel about Endoc­ri­no­lo­gists they have visi­ted throughout the years.  Their expe­rien­ces are far from flat­te­ring. In other words, with a few excep­tions, thy­roid patients are NOT impres­sed with Endo’s.

Medco’s sta­te­ments are defi­ni­tely a con­cern for patients and range from pre­sump­tous to unfac­tual.  But those sta­te­ments only repre­sent a far wider pro­blem around the world in the medi­cal com­mu­nity.  Cli­ni­cal pre­sen­ta­tion and wis­dom has been thrown out the win­dow by doc­tors.  So patients have to con­ti­nue sprea­ding the word about the far supe­rior treat­ment of desic­ca­ted thy­roid, and their pro­ble­ma­tic expe­rience with T4. 

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

***50% off sale!! All STTM t-shirts are now on sale. I love sales. Not only do they help sup­port this site, they are a great way to spread the word. Go here.   Did you know that Laughing Grape Publishing will send a STTM book directly to your doc­tor?

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.

Louis Nei­pris, M.D., a staff wri­ter who has writ­ten many fine artic­les for myOptumHealth.com, recently wrote one article tit­led Adre­nal Fati­gue: Is it for real? It appea­red on Upper Michi­gan News, TV 6 web­site on July 16^th and is making the rounds on other sites. His ans­wer to his own ques­tion?  “Not really”. He adds  “it’s not an accep­ted medi­cal diagnosis.”

Oops.

Dr. Nei­pris, thy­roid patients all over the world beg to dif­fer, as do a gro­wing body of collea­gues in your pro­fes­sion. Adre­nal fati­gue, aka low cor­ti­sol, has been dis­co­ve­red on the back of a huge body of thy­roid patients, wea­ring them down with  irri­ta­bi­lity, anxiety, sha­ki­ness, fee­ling dizzy or lighthea­ded­ness, sleep issues, swea­ting, salt cra­ving, nau­sea in the face of stress, and a host of other symp­toms uni­que to each indi­vi­dual with adre­nal fati­gue. My per­so­nal obser­va­tion, as a thy­roid patient acti­vist, is that up to 50% of millions of thy­roid patients all over the world, may have adre­nal fati­gue, or at the very least, a slug­gish feed­back loop.

Even worse, the wides­pread occu­rrence of adre­nal fati­gue, espe­cially in thy­roid patients, has cau­sed pro­blems when they try rai­sing a far supe­rior thy­roid medi­ca­tion called desic­ca­ted thy­roid. Because cor­ti­sol is nee­ded to faci­li­tate the move of thy­roid hor­mo­nes from the blood to the cells, the direct T3 in desic­ca­ted thy­roid pools in the blood, cau­sing low-cortisol-induced hyper symp­toms like a poun­ding hear­trate and irri­ta­bi­lity. The first-pass treat­ment then has to start with hydro­cor­ti­sone like presc­rip­tion Cor­tef from their doctors.

Why have such a large body of thy­roid patients found them­sel­ves with adre­nal fati­gue and its low cor­ti­sol? It’s clear. The TSH lab test sucks, giving one a “nor­mal” rea­ding for years in spite of obvious cli­ni­cal pre­sen­ta­tion of hypothy­roid symp­toms, and pushing one’s adre­nals into over­drive with high cor­ti­sol and adre­na­line to keep the patient going, and ulti­ma­tely lea­ding to adre­nal fati­gue.  On page 65 of the Stop the Thy­roid Mad­ness book, you’ll read about a 44 year old woman who went 15 years with a “nor­mal” TSH result, in spite of obvious cli­ni­cal pre­sen­ta­tion of hypothy­roi­dism, and which led to her own low cor­ti­sol. This is not uncommon.

Second, the risk of adre­nal fati­gue is high due to the ina­de­quate treat­ment of T4 medi­ca­tions like Synth­roid, Levoxyl, levothy­ro­xine, Eltro­xin and other T4-only meds. They all leave patients with their own brand and inten­sity of lin­ge­ring symp­toms of a poor treat­ment, for­cing the adre­nals to kick in too long for many.

Even William Mck. Jef­fries MD., who wrote the medi­cal clas­sic Safe Uses of Cor­ti­sol around 1984, unders­tood the pre­pon­de­rance of adre­nal fati­gue even without the diag­no­sis of Addison’s, and the need for phy­sio­lo­gic doses of cor­ti­sol treat­ment, or the amount nee­ded by each indi­vi­dual.  And he would cer­tainly be ama­zed by the explo­sion of adre­nal fati­gue that has occu­rred since then in thy­roid patients thanks to the lousy TSH and synthe­tic T4-only ‘affaire de coeur’ with doctors. 

Adre­nal fati­gue may not be an “accep­ted diag­no­sis” by many.  But medi­cal pro­fes­sio­nals and doc­tors who think it’s not real or an accep­ta­ble diag­no­sis will have to face a huge body of patients glo­bally who DO have real live adre­nal fati­gue. And adrenally-fatigued patients can get realllllly hos­tile and angry because of low cor­ti­sol, and be very impa­tient when you deny their rea­lity.  (You’re going to see a lot of com­ments to this post which I highly sug­gest reading.)

P.S. Even desic­ca­ted thy­roid like Natu­reth­roid and the pre-reformulated Armour are not con­si­de­red to be the stan­dard of prac­tice for trea­ting hypothy­roi­dism, yet thy­roid patients all over the world are having lives CHANGED thanks to it.

***Want to be infor­med of my blog posts? Curious what’s on my mind? Use the Noti­fi­ca­tions to the left and right below the links.

***Read below why thy­roid patients are not happy with Armour and switching to brand names like Naturethroid.