levoxyl tags

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?

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.

I’ve been peru­sing com­ments in res­ponse to the UK’s Royal College of Phy­si­cians blun­de­ring and dark-age-constructed Diag­no­sis and treat­ment of pri­mary hypothy­roi­dism.  And though all com­ments are quite good and worth your read, I was struck by the com­ment tit­led May Rea­lity Intrude? by a man named Char­les.

Char­les explains that in 1999, his 67-year-old wife had RAI (radioac­tive iodine) and was then put on levothy­ro­xine, a T4-only medi­ca­tion (aka Synth­roid, Levoxyl, Eltro­xin, Oro­xine, levothy­ro­xine, et al).  And not long after, she com­plai­ned of having depression.

He had an idea why after rea­ding the New England Jour­nal of Medi­cine about T3, and pro­cee­ded to buy her Armour off the inter­net.  Without her kno­wing, he switched medi­ca­tions. Lo and behold, he sta­tes “she promptly retur­ned to her usual sunny dis­po­si­tion”. Her phy­si­cian knew nothing of the switch either, and found nothing to be con­cer­ned about in her.

Char­les then explai­ned how, at age 74 in 2007, she was near death thanks to an ulcer bleed.  And to con­ti­nue trea­ting her hypothy­roi­dism, the hos­pi­tal gave her levothy­ro­xine all over again.  Back came her depres­sion and a fee­ling of wan­ting to go home and die.

So Char­les brought her Armour to the hos­pi­tal, and though her phy­si­cal state was depres­sing enough, her sunny dis­po­si­tion retur­ned.  And that happy spi­rit while still on Armour con­ti­nues today after a full reco­very.

And Char­les pon­de­red. If his wife had been in a NHS (Natio­nal Health Ser­vice) hos­pi­tal under the care of a so-called thy­roid spe­cia­list of the NHS, would she have fai­led to obtain T3 and ins­tead, sent to a psychia­trist as if her depres­sion had nothing to do with her levothy­ro­xine trea­ted hypothy­roi­dism – the very treat­ment that the Royal College of Phy­si­cians has a dog­ma­tic love affair with?

He then conc­lu­des: My wife’s depres­sion was obvious. Since she is equip­ped with much the same assort­ment of body parts and asso­cia­ted phy­sio­logy as others, is it not likely that many levothyroxine-treated patients suf­fer from less-noticeable depression?

Well Char­les, most any thy­roid patient who deci­des to res­pond to this will tell you une­qui­va­cably YES, YES, YES.  Because there’s no research, study or direc­tive that is more pro­found and telling than the actual EXPERIENCE of patients all over the world with T4 treat­ment and depression…besides a slew of other side effects of con­ti­nuing hypothy­roi­dism on T4-only meds.

Did you have depres­sion on a T4 med? Tell us about your expe­rience in the Com­ments sec­tion of this post.

*Want to be infor­med of these blogs? Curious what’s on Janie’s mind? Use the Noti­fi­ca­tions on the lower left of the links.

*Scroll down to the June 2^nd post and report your expe­rience on the newly for­mu­la­ted Armour. It’s not a happy pic­ture.

Jes­sica Terry is an 18 year old stu­dent at Washing­ton State high school in the Bay Area who had years of pro­blems which doc­tors couldn’t figure out: vomi­ting, diarrhea, weight loss and sto­mach pains.  Doc­tors said she had irri­ta­ble bowel syn­drome or coli­tis, and said her intes­ti­nal tis­sue was just fine accor­ding to slides.

Yet, she just knew that wasn’t correct.

So she took some of her own intes­ti­nal tis­sue to her Bio­me­di­cal Pro­blems class, and voila…she diag­no­sed her own pro­blem:  gra­nu­loma, and spe­ci­fi­cally, Crohn’s disease, an inflam­ma­tion of her intestines.

Sound fami­liar??

Yup, thy­roid patients have had to do the exact same thing – self-diagnose– for almost ten years because of con­ti­nuing symp­toms of hypothy­roi­dism which doc­tors have rou­ti­nely dis­mis­sed, pooh-poohed or bla­med on something else.  It’s all been a horri­fic, wide-reaching and dama­ging 50 year medi­cal scan­dal by the medi­cal esta­blish­ment upon thy­roid patients.

And why has this cala­mity occu­rred? Because doc­tors have always been hood­win­ked by their medi­cal school trai­ning, con­ti­nuing edu­ca­tion and Big-Pharma-financed-research in belie­ving that T4-only thy­ro­xine medi­ca­tions like Synth­roid, Levoxyl, Levothy­ro­xine, Eltro­xin, et. al. were from God Almighty, and the TSH lab test was just as holy.

And thanks to thy­roid patients around the world who had the gall to use the inter­net and join patient groups, we figu­red out it’s all because those medi­ca­tions and lab­work have not wor­ked, and what has wor­ked. Addi­tio­nally, it was patients who dis­co­ve­red they had adre­nal fati­gue and/or low ferri­tin and how to treat it, and patients who have suc­cee­ded in begin­ning a wave of change around the world in the treat­ment and diag­no­sis of hypothy­roi­dism (except for the UK, who has gone back­wards to the dark ages).

You can read Jessica’s story first repor­ted in the Sam­ma­mish Repor­ter,  and only recently repor­ted to a wider audience in the Bay Area News news­pa­per. She also spoke to a CNN affiliate.

Thanks to Kem on NTH for infor­ming me of this news.

P.S. Do ya think that any news­pa­pers or major news out­lets like CNN are going to finally get what a huge story thy­roid patients have given them?? We’re still waiting.…..

*Want to be infor­med of Janie’s blog posts? Curious what’s on her mind? Just use the Noti­fi­ca­tion link to the bot­tom left of the links.

As Susan Boyle of the UK had a dream which came true, I too wish from the dee­pest place in my heart that some­day soon, SOMEONE from the mass media will FINALLY get smart and do a wide-reaching story for the hun­dreds of millions who are still on T4 meds like Syth­roid, Levoxyl, Levothy­ro­xine, Eltro­xin, Oroxine…and who have depres­sion or a myriad of other lin­ge­ring symp­toms of a sucky, laugha­ble and sha­me­ful treat­ment.  This video ins­pi­res me today just as it did a few weeks ago.  Enjoy and dream with me. http://www.youtube.com/watch?v=bFzS0wgwyW4&annotation_id=annotation_179773&feature=iv

Janie

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

*See below on how being on T4 meds can affect your liver. And below that – why I’m han­ding my pro­mise ring back to Forest Phar­ma­ceu­ti­cals.