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Is there a genetic reason many of us do lousy on T4?

deiodinase2Last 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?  :lol: 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.

Getting the facts straight about Dr. Sydney Wolfe, and what YOU can do.

armourbottleWith the recent blog post by health wri­ter Mary Sho­mon con­cer­ning Dr. Sid­ney Wolfe’s new 4-year term with the FDA’s Drug Safety and Risk Mana­ge­ment Advi­sory Com­mit­tee, there has been much brooha and fear-mongering on thy­roid patient groups.

Why? Well look at it this way. This is a man of sta­ture. He is an MD, an Adjunct Pro­fes­sor of Medi­cine, the direc­tor of Public Citizen’s health research group which pro­mo­tes drug safety and public health, and edi­tor of the news­let­ter Worst Pills, Best Pills, and since August of  ’08, a mem­ber of the Drug Safety Com­mit­tee.  He also has a resume a mile long.

Yet in spite of his see­mingly caring acti­vism for our health and well-being, and his immense expe­rience and edu­ca­tion, he is clearly and com­ple­tely off-base about Armour and other desic­ca­ted thy­roid presc­rip­tion drugs. 

For exam­ple, as as edi­tor of the Worst Pills, Best Pills news­let­ter,  Wolfe dec­la­red Armour desic­ca­ted thy­roid as a “Do Not Use” pro­duct because it is not ade­qua­tely gua­ran­teed to pro­vide appro­priate blood levels of thy­roid hor­mone and relia­ble alter­na­ti­ves are avai­la­ble”. (Gee, funny how our expe­rien­ces are com­ple­tely other­wise.…)

Then in the May 2003 issue (of which you have to have a paid presc­rip­tion to read), he wrote an article tit­led  “Do Not Use! Natu­ral or Desic­ca­ted Thy­roid (ARMOUR THYROID) For Thy­roid Hor­mone Repla­ce­ment The­rapy.” In that article, the clue­less Wolfe sta­ted that he sup­por­ted The Ame­ri­can Thy­roid Association’s sta­te­ment “There is no evi­dence that desic­ca­ted thy­roid, a bio­lo­gi­cal pre­pa­ra­tion, has any advan­tage over synthe­tic thy­ro­xine.” (I guess millions of us and our impro­ved hear­trate, sta­mina, cho­les­te­rol, depres­sion and more…aren’t evi­dence?)

He then pro­po­ses that Armour is mostly presc­ri­bed for weight loss, is a niche mar­ket for the unsc­ru­pu­lous, and conc­lu­des with “if you are offe­red natu­ral thy­roid hor­mone repla­ce­ment treat­ment for any rea­son, this is a red flag and you should get a second opi­nion.” In a let­ter to con­su­mers, Wolfe and Public Citi­zen state that that T3 is only nee­ded from con­ver­sion and is pre­dic­tably found from con­ver­sion, that the T2 and T1 also found in desic­ca­ted thy­roid has essen­tially no acti­vity, that desic­ca­ted thy­roid is an unpre­dic­ta­ble mix­ture, that is has no pre­dic­ta­ble bio­lo­gi­cal acti­vity…plus so many more com­plete and total inac­cu­ra­cies based on “inte­llec­tual head chat­ter” not on obser­va­tion and experience.

Thud.

Mary Sho­mon, in 2003, did a bang-up job trying to com­mu­ni­cate with Wolfe, Worst Pills, Best Pills, and Public Citi­zen about the inac­cu­ra­cies of their beliefs and statements…basically to no avail. The TRUTH is here, and in more detail in Chap­ters 1 and 2 in the STTM book which are enligh­te­ning those rea­ding it all!

So we are left won­de­ring, six years later, what his four-year appoint­ment to this com­mit­tee will mean. But let’s make a few things quite clear to con­trast some of the fears going on and expres­sed on thy­roid groups:

1) Armour is not being ban­ned.
2) Wolfe is one of a current 9 mem­bers of this com­mit­tee. Wolfe is not “the com­mit­tee”.
3) Wolfe and seven others currently have voting rights. He is the only “Con­su­mer Repre­sen­ta­tive”.
4) There are still six more vacan­cies.
5) The com­mit­tee is NOT the power. They simply make recom­men­da­tions. And his­to­ri­cally, the FDA can be slow to act on their recom­men­da­tions, or doesn’t follow them at all (which is a GOOD thing when it comes to a SAFE and EFFECTIVE medi­ca­tion like desic­ca­ted thyroid).

So what can you do? I cha­llenge you to follow and act on the below, which puts our ener­gies into com­mu­ni­ca­tion, not fee­ding the ego and power of a mis­gui­ded man with our overtly expres­sed fears as if they have actually come to pass :

1) Remem­ber 1 – 5 above. Armour is fully avai­la­ble. Keep the facts straight, and fear-mongering down.

2) STTM has a power­ful and gro­wing page of tes­ti­mo­nies of those who switched to desic­ca­ted thy­roid.  Are you in there? If not, you need to be. This web­site currently has a huge audience. It’s noti­ced by doc­tors all over the world, as is the STTM book, which is YOUR book of YOUR expe­rien­ces,  which is also being orde­red by doc­tors. Use the Con­tact Me form at the bot­tom of that page.

3) Tell your expe­rience with Synth­roid or other thy­ro­xine medi­ca­tions at the follo­wing web­si­tes:  www.rateadrug.comwww.drugs.comwww.askapatient.com They don’t inc­lude any of the desic­ca­ted thy­roid meds yet, but you can tell of the nega­tive expe­rien­ces with all the T4-only drugs, inc­lu­ding adre­nal fati­gue if you fell into that, and all your lin­ge­ring thy­roid symp­toms.  The above links will take you to their Synth­roid page – you can search for the other T4 meds.  Remem­ber to men­tion Armour or other desic­ca­ted thy­roid meds and how they have hel­ped you!! Update: thy­roid patient Gina found the drugs.com Armour page: http://www.drugs.com/comments/thyroid-desiccated/armour-thyroid.html

4) Report your T4-only expe­rience to Med­Watch, the FDA’s  pro­gram for repor­ting pro­blems.  You will see an Online Repor­ting Form to down­load. Don’t fail to men­tion which pro­blems were remo­ved or greatly impro­ved when you switched to Armour, or the fact that you now have to deal with adre­nal fati­gue thanks to the ina­de­quacy of T4-only treat­ment. You can also call 1 – 800-FDA-1088, but remem­ber: your call is not to draw atten­tion to Wolfe’s opi­nions! It’s to draw atten­tion to how lousy a treat­ment T4 is as com­pa­red to how much bet­ter Armour has been.

5) Go to my article tit­led Synth­roid Sucks: the Rall­ying Cry of Thy­roid Patients vs. Clue­less Doc­tors and com­ment on this article, inc­lu­ding men­tio­ning what Armour, Natu­reth­roid or other desic­ca­ted thy­roid did for you. Rate it as well. Both keep this article in the media and in the eyes of others.

6) Go to www.medications.com where patients ask ques­tions and YOU can ans­wer, men­tio­ning YOUR expe­rience and how much bet­ter desic­ca­ted thy­roid has been. Clic­king on that will take you to the Synth­roid patient ques­tions. Ans­wer them. Be care­ful with links – they may not catch them at first, but will remove them if they do.  You can men­tion web­site names, tho, like Stop the Thy­roid Madness.

7) Send peo­ple here to follow all these steps. Power is in numbers!

8 ) Use the follo­wing web­site to email or write your sena­tors and repre­sen­ta­ti­ves: http://www.visi.com/juan/congress/ THEY DO READ THEM. And they will remem­ber this!  Here’s a tem­plate let­ter you can use:  www.stopthethyroidmadness.com/template-letter-to-your-senator-or-representive/

If you have other ideas and pla­ces to write or call, add your com­ment to this post. Remem­ber,  put your power in com­mu­ni­ca­tion! LOTS of communication.

P.S. Did you know that the Ame­ri­can Thy­roid Asso­cia­tion, in coo­pe­ra­tion with the Ame­ri­can Asso­cia­tion of Endoc­ri­no­lo­gists, together sup­port January as “Thy­roid Awa­re­ness Month”…which is sup­por­ted through an unres­tric­ted grant from Abbott Labo­ra­to­ries, the makers of Synth­roid?? Major UGH.


Puff. Puff. Puff. If you are a cigarette smoker & hypothyroid, you might want to read this!

Who, as a smo­ker, hasn’t heard how dele­te­rious tobacco smo­king is for your health. Not only will you acquire health pro­blems directly rela­ted to smo­king, but your life is shor­te­ned by 10 – 15 years ave­rage accor­ding to sta­tis­tics. My own father died at age 63 directly rela­ted to his smoking.

But in spite of strong rea­sons to quit, most smo­kers will tell you it’s NOT easy. Why? Because the nico­tine in tobacco is the addic­tive bogey­man. Nico­tine sti­mu­la­tes those plea­sure cen­ters in your brain, besi­des being a subs­tance which “gets you going” by relea­sing both blood sugar and adre­na­line. The Ame­ri­can Heart Asso­cia­tion sta­tes that “Nico­tine addic­tion has his­to­ri­cally been one of the har­dest addic­tions to break.”

But for hypothy­roid patients, tobacco smo­king pre­sents another whammy.
Namely, it stres­ses your adre­nals over and over. And with adre­nal fati­gue being a com­mon side effect of trea­ting hypo with T4 meds like Synth­roid, Levoxyl, Eltro­xin, et all, as well as being dosed by the lousy TSH, you’ve got a third rea­son to fall into adre­nal fati­gue if you are a smoker.

Addi­tio­nally, another fac­tor in the dif­fi­culty of quit­ting is that cor­ti­sol dec­rea­ses when you try to quit. A 2006 research report found that the lowe­red cor­ti­sol after quit­ting is asso­cia­ted with smo­king relapse and with reports of inc­rea­sed with­dra­wal seve­rity and dis­tress. So, when you already have adre­nal fati­gue, and you quit smo­king – a dou­ble whammy against being successful.

What’s the solu­tion? If you don’t have adre­nal fati­gue and want to quit, it may be wise to have a good adre­nal sup­port on hand, such as Iso­cort or any qua­lity OTC adre­nal pro­duct at your health food store. If you DO have adre­nal fati­gue, sta­ying away from cigs may require adding addi­tio­nal cor­ti­sol to your daily amount. Chap­ters 5 and 6 in the STTM book have good infor­ma­tion to help you with cor­ti­sol support.

Are you a smo­ker with hypo? Don’t hesi­tate to res­pond to this post with your expe­rience. (Please note that replies are not for questions.)

READ DEBORAH’S STORY ABOUT HER ATTEMPT to STOP SMOKING.

My mouth fell open when she told me!

I called Rhea on the phone today. 

Ear­lier today, Rhea was in the one-operator beauty salon at the same time as my 90 year old mother-in-law: one get­ting her gray hair dried while the other got her gra­yer tres­ses rolled. And as con­ver­sa­tions go in beauty salons, it tur­ned to per­so­nal topics (which can range from one’s mari­tal hap­pi­ness to whether Mrytle’s boobs are real or expan­ded.) And one of those topics was about Rhea’s hypothy­roi­dism as well as her daughter’s. 

And of course, my very doting mother-in-law men­tions the STTM book writ­ten by her daughter-in-law, Janie, and hands her a copy from the car. Long story short…Rhea wants me to call her.

The phone con­ver­sa­tion went into the fact that she used to be on Armour, but then lis­te­ned to a local doc­tor seve­ral years later who switched her to Synth­roid – “a far more sta­ble medi­ca­tion”. (not) Since she switched, she says she’s felt terri­ble for years, and has recently retur­ned to Armour, and with the vast infor­ma­tion in the book, unders­tood now how she nee­ded to raise.

And then came the shoc­ker: THE DOCTOR WHO PUT HER ON ARMOUR WAS BRODA BARNES. 

My eyes got as big as fiesta din­ner pla­tes and I exc­lai­med “THE Broda Bar­nes??” “Yes,” she replied. “I saw him in Love­land, Colo­rado and he was a dar­ling man.” She pro­cee­ded to tell me that when doc­tors ente­red the room back then, you stood. And she remem­bers his wife being there, and being just as sweet as he. She reca­lled him saying that when he was in medi­cal school, he was disap­poin­ted when the pro­fes­sor assig­ned him to study the thy­roid gland. “Such a little puny gland”, he thought. “But today, 50 years later, I still have so much to learn about that little gland.”

For those who don’t know the name of Broda Bar­nes, he was the father of the desic­ca­ted thy­roid move­ment and an autho­rity on the thy­roid. Even back then, he knew of the supe­rio­rity of desic­ca­ted thy­roid treat­ment like Armour, and presc­ri­bed it. He also wrote the clas­sic Hypothy­roi­dism: The Unsus­pec­ted Ill­ness. His book and legacy kept the idea of Armour and desic­ca­ted thy­roid alive all these years later when we, as patients, were paying attention. 

Rhea is now up to 4 grains Armour and fee­ling much bet­ter, and may have to go a little higher before she’s opti­mal. Thank you, Rhea, for giving me and anyone rea­ding this a little peek into the won­der­ful Broda Barnes. 

Celebrities with hypothyroidism – where are you?

I often won­der how many cele­bri­ties MUST have hypothy­roi­dism, yet we don’t know it. Tonite, I just found out that Jillian Michaels, the tough and mus­cu­lar fit­ness buff on the TV show Big­gest Loser, has hypothyroidism. 

And you’re left to won­der: is she, and are others, on Armour, Natu­reth­roid, Westh­roid?? Have they found out about the supe­rior treat­ment of desic­ca­ted thy­roid over a T4-only treat­ment with Synth­roid, Levoxyl, et al? 

Other cele­bri­ties with hypo inc­lude Kim Ale­xis, Linda Rons­tadt, Kim Cat­trall, Kelly Osbourne, Oprah Win­frey and others. We can only hope that one day, someone will figure out that desic­ca­ted thy­roid is a supe­rior treat­ment, and help us spread the word. So far, Oprah has let us down. Maybe…maybe…someone with the abi­lity to spread the word will step up to the plate. :)

p.s. Pre­fer a book to a web­site? STTM is now in book form, with even more infor­ma­tion than you can find on this site, and wai­ting to be in your hands.