t3 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.

Last May, a very inte­res­ting article appea­red in the May 2009 issue of the Jour­nal of Cli­ni­cal Endoc­ri­no­logy and Meta­bo­lism, tit­led For Some, L-Thyroxine Repla­ce­ment Might Not Be Enough: A Gene­tic Ratio­nale and pre­sen­ted by Endoc­ri­no­lo­gists in Bris­tol in the UK. It’s accom­pa­nied with an edi­to­rial by Endoc­ri­no­lo­gists Brian W. Kim and Anto­nio C. Bianco.

This is the same article refe­rred to by Endoc­ri­no­lo­gist Dr. Gary Pep­per on the last Thy­roid Patient Com­mu­nity Call on Talkshoe.

Basi­cally, the article sta­tes that a gene­tic varia­tion in the enzyme that con­verts T4 to T3, deio­di­nase D2 (also called Type 2 Deio­di­nase, or 5′-Deiodinase), may be res­pon­si­ble for why so many thy­roid patients don’t do well on Synth­roid, Levoxyl, levothy­ro­xine, etc, and in turn, do so much bet­ter on natu­ral desic­ca­ted thy­roid like Natu­reth­roid, Erfa’s Thy­roid, or the com­bi­ned synthe­tic T4 and synthe­tic T3 (Cytomel). 

In other words, where some may have a strongly func­tio­ning deio­di­nase D2 enzyme which con­verts T4 to the active T3 well, others may have a modi­fied deio­di­nase D2 enzyme, cau­sing less opti­mal conversion.

In the Edi­to­rial, the two Endos Kim and Bianco explain the rea­lity of “polymorphism” – a con­di­tion in nature in which chan­ges or varia­tions occur, and in one patient from another, a change in the DNA.  As rela­ted to con­ver­sion of T4 to T3,  some thy­roid patients have a less effec­tive deio­di­nase D2 enzyme in the con­ver­sion of T4 to T3.  Spe­ci­fi­cally, there is a com­mon variant of the gene, threo­nine (Thr) 92 ala­nine (Ala), and it results in dec­rea­sed D2 enzy­ma­tic activity.

The study pro­po­ses that this alte­ra­tion from poly­morphism occurs in 16% of those stu­died, and conc­lu­des that the majo­rity don’t have this pro­blem, and thus, “most do fine on T4-only medi­ca­tions”. But 16% do have this pro­blem and need the com­bi­ned the­rapy of T4 with T3.

Bris­tol was also men­tio­ning this rea­lity in 2004 here, even if they thought it was as low as 5%.

As Dr. Pep­per hin­ted, this study could do won­ders to open the eyes of Endoc­ri­no­lo­gists about the use of desic­ca­ted thy­roid, or at the very least, about com­bi­ned hypothy­roid treat­ment with synthe­tic T3 added to synthe­tic T4.  And I’m glad for that when so many patients have found Endoc­ri­no­lo­gists to be narrow-mindedly stuck on Synth­roid or other T4-only thy­ro­xine products.

Of course, infor­med thy­roid patients know this is only a baby step in the right direc­tion, even if a good one! So we’ll rejoice for this study, and watch for more pro­gress from the medi­cal com­mu­nity and Endoc­ri­no­logy in gene­ral. For exam­ple, saying that “most do fine on T4” simply because they have may a non-variation might be pro­ven wrong as phy­si­cians take the time to really look at those “fine” patients, espe­cially as they age and symp­toms of an infe­rior treat­ment do pop up. And though the com­bi­na­tion of synthe­tic T3 with synthe­tic T4 defi­ni­tely gives bet­ter results, thy­roid patients who then moved to desic­ca­ted thy­roid with it’s T4, T3, T2, T1 and cal­ci­to­nin report even bet­ter results and cli­ni­cal pre­sen­ta­tion!  We’ve also lear­ned that the TSH lab test abso­lu­tely sucks when it comes to diag­no­sis and treat­ment.  Read TSH Why It’s Use­less, or see even more detail in Chap­ter Four of the STTM book, tit­led Thy­roid Sti­mu­la­ting Hooey.

And finally: do thy­roid patients really believe that pro­blems with T4-only treat­ment is simply due to a gene­tic abnor­ma­lity or varia­tion? Maybe. But isn’t it funny that a healthy human thy­roid does NOT depend solely on con­ver­sion, but also gives direct T3. hmmmmmm

P.S.  Patients also know that the use of the sup­ple­ment Sele­nium helps with con­ver­sion, by the way, but has never stop­ped our first-hand know­ledge that desic­ca­ted thy­roid rocks!

*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.

We had a great Thy­roid Patient Com­mu­nity Call Fri­day night on TalkShoe with John Voliva, RPh, the Pre­si­dent of Hooks Apothe­cary in Evans­vi­lle, Indiana. Hooks Apothe­cary is a compounding-only phar­macy that has been in exis­tence for ten years and is a small and high qua­lity family-owned business.

And with our current shor­tage of desic­ca­ted thy­roid via the tablets we were used to, com­poun­ding phar­ma­cies are a good alter­na­tive in the mean­time. Here’s what we lear­ned from Mr. Voliva:

1) Dif­fe­rent com­poun­ding phar­ma­cies will use dif­fe­rent fillers. Hooks Apothe­cary, for exam­ple, uses pow­de­red aci­dophi­les, the “active cul­ture” which helps replace the good flora in your gut and impro­ves digestion.

2) Com­poun­ded desic­ca­ted thy­roid can be more expen­sive for two rea­sons: they acquire sma­ller amounts of the pow­der as com­pa­red to the huge amounts obtai­ned by a phar­ma­ceu­ti­cal like Forest, and it takes time to com­pound it.

3) A good com­poun­ding phar­macy will give you the Cer­ti­fi­cate of Analy­sis right when you ask for it, and you should ask for it. This Cer­ti­fi­cate will tell you how much T4 and T3 is in one grain..and it’s not always simply 38/9 mcg.  It could be 35/8.6 or 39/8.5 per grain…for exam­ple.   Find out because there are allo­wed devia­tions of 10 mcg +-.  A really good phar­macy will shoot for an even bet­ter devia­tion and will also pro­duce that Cer­ti­fi­cate right when you ask for it, not a day later. To not receive that docu­men­ta­tion right when you ask implies they really weren’t paying much atten­tion to the deviation.

4) A com­poun­ding phar­macy will get bet­ter devia­tions when they create a 65 mg grain of com­poun­ded desic­ca­ted thy­roid than when they create a 60 mg grain.

5) Top notch Com­poun­ding Phar­ma­cies will be acc­re­di­ted by, or be close to com­ple­ting the steps towards, the Phar­macy Com­poun­ding Acc­re­di­ta­tion Board.

6) Com­poun­ding phar­ma­cies can’t make a desic­ca­ted thy­roid trouche because of the pro­blems with heat in the pro­ces­sing of the trouche.

7) Mr. Voliva feels it would be too easy to over­dose with trans­der­mal (on the skin) desic­ca­ted thyroid.

8 ) Com­poun­ding phar­ma­cies, via their 5 – 6 dis­tri­bu­tors, get the pow­der from Ame­ri­can Labo­ra­to­ries.  But not all com­poun­ding phar­ma­cies will be as dili­gent as others to make sure the devia­tion is clo­ser to 5%.

9) If the com­poun­ding phar­macy is get­ting their pow­der via the dis­tri­bu­tor PCCA (Pro­fes­sio­nal Com­poun­ding Cen­ters of Ame­rica), you can be assu­red you are get­ting a good pro­duct.  Ask the phar­ma­cist where they are get­ting it.

10) Com­poun­ding phar­ma­cies gene­rally have plenty of desic­ca­ted thy­roid powder.

My apo­lo­gies to a group of callers whose chat ques­tions I wasn’t able to see. I have sent a ques­tion about that to Talk Shoe’s Cus­to­mer Sup­port to find an ans­wer before the next Com­mu­nity Call. But on the good side,  the audio wor­ked on everyone’s computer.

Need alter­na­ti­ves during this shor­tage time? Here are options you can consider. 

*Want to be infor­med of these fringe web­site blog posts? Curious what’s on unpro­fes­sio­nal 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!

I have been dri­ving all day, brin­ging my hus­band back home after serious hand sur­gery yes­ter­day. And while I was away from the com­pu­ter, I recei­ved the below via the Con­tact Me form of STTM, writ­ten by Mary Budin­ger for the Ari­zona Net News jour­nal, Sep­tem­ber 16, 2009:

Dr. Mark Starr’s office team wan­ted to send over a por­tion of an article just writ­ten for an Ari­zona health maga­zine:

Desic­ca­ted thy­roid from pigs is a bio-identical, com­plete hor­mone pre­pa­ra­tion, con­tai­ning the entire spec­trum of thy­roid hor­mo­nes inc­lu­ding T4, T3, T2, and T1 that are in the human thy­roid gland.

Current FDA appro­ved thy­roid medi­ca­tions inc­lude Synth­roid, Unith­roid, Levoxyl, and Levothy­ro­xine (all only con­tain T4), and Cyto­mel (only T3). These hor­mo­nes are synthe­tic and con­tain only a por­tion of the thyroid’s hormones.

Dr. Mark Starr of Phoe­nix, Ari­zona, said patients have called him, fran­tic that desic­ca­ted thy­roid is una­vai­la­ble. “It is so key to my prac­tice, I have enough for my patients. So far, it appears that when supply catches up with demand in a few months, the shor­tage will be over.”

Dr. Starr is the author of “Hypothyroidism-Type 2.” He said synthe­tic thy­roid acts ener­ge­ti­cally dif­fe­rently in the body. “All living things have a right spin, and synthe­tic medi­ca­tions have a left spin. The desic­ca­ted thy­roid is bet­ter tolerated.” 

Dr. Broda Bar­nes did a study that revea­led a rela­tive into­le­rance to a synthe­tic thy­roid pro­duct con­tai­ning T3 and T4 (Thy­ro­lar). One-fifth of the patients who had done well on desic­ca­ted thy­roid deve­lo­ped rapid heart beats and pal­pi­ta­tions when switched to Thy­ro­lar. Dr. Bar­nes also did a major research study on desic­ca­ted thy­roid that invol­ved thou­sands of patients over 30 years; it sho­wed a 94 per­cent reduc­tion in the num­ber of expec­ted heart attacks. This study is the sub­ject of the 1976 book “Sol­ved: The Riddle of Heart Attacks.” 

Lipi­tor is the best selling drug in the world. But for the first half of the 20^th cen­tury, desic­ca­ted thy­roid was the stan­dard treat­ment for high cho­les­te­rol. Ele­va­ted cho­les­te­rol and trigly­ce­ri­des are one of the myriad symp­toms of hypothy­roi­dism. Dr. Bar­nes’ book inc­lu­ded a chap­ter entit­led “The Demise of the Cho­les­te­rol Theory.” Desic­ca­ted thy­roid nor­ma­li­zed cho­les­te­rol and trigly­ce­ri­des in 95% of the patients Dr. Bar­nes trea­ted. The 5% who had per­sis­tently ele­va­ted levels had no inc­rea­sed inci­dence of heart attacks. Desic­ca­ted thy­roid the­rapy also resol­ved a long list of other hypothy­roid symp­toms such as fati­gue, cold into­le­rance, joint and muscle pain, dry skin, ina­bi­lity to lose weight, hea­daches, and mens­trual pro­blems. One of the most impor­tant bene­fits that Dr. Bar­nes demons­tra­ted in stu­dies on both ani­mals and his patients was that desic­ca­ted thy­roid inc­rea­ses immu­nity and allows the body to fight off infec­tions. As we come into swine flu sea­son, this is par­ti­cu­larly important.”

Dr. Starr, I love the way you put it: “All living things have a right spin, and synthe­tic medi­ca­tions have a left spin. The desic­ca­ted thy­roid is bet­ter tole­ra­ted.” And that’s exactly why the web­site Stop the Thy­roid Mad­ness exists – patients all over the world have found out what a far bet­ter “right spin” treat­ment desic­ca­ted thy­roid has been for them!  So we pre­sent this infor­ma­tion, hoping that more and more patients can learn from the paths wal­ked before them, and take this right into their doc­tors offices.

And about Thy­ro­lar, which is a com­bi­na­tion of synthe­tic T4 and synthe­tic T3:  we’re glad it exists. But…there have been nume­rous patients over the years who tried the com­bi­na­tion of synthe­tic t3/ synthe­tic T4, and who then switched to desic­ca­ted thy­roid. And they iden­ti­cally report on the NTH thy­roid group that they got far bet­ter results from desic­ca­ted thy­roid. That is power­ful information.

And yes, Dr. Starr, we are loo­king for­ward for supply to catch up, because natu­ral desic­ca­ted thy­roid is a godsend. 

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

Join the Thy­roid Patient Com­mu­nity Call on Talk Shoe this Fri­day. UPDATE: the Pre­si­dent of Hook’s Apothe­cary, a com­poun­ding phar­macy that ser­ves Illi­nois and Indiana, will be in the chat to talk about com­poun­ding desic­ca­ted thyroid.

Also check out the post below con­cer­ning pos­si­ble hints that we are clo­ser to seeing more desic­ca­ted thy­roid on our shel­ves?

*Want to be infor­med of these fringe web­site blog posts? Curious what’s on unpro­fes­sio­nal 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!