levothyroxine tags

Funny how things work. I had been won­de­ring what the heck was going on with thy­roid patients in the UK after the Royal College of Phy­si­cians (RCP) came out with their February 6^th gui­de­line sta­ting that 1) thy­ro­xine was the only medi­ca­tion nee­ded for hypothy­roi­dism, 2) “natu­ral” medi­ca­tions were dan­ge­rous and 3) the only labs nee­ded are the TSH and T4.

All the above goes totally against the life-changing expe­rience of a gro­wing body of patients.

Equally a part of this B-grade horror movie is the stand taken by the Bri­tish Thy­roid Asso­cia­tion (BTA).  Read it. And UK-TPA thy­roid patient advo­cate Sheila Tur­ner began to go through her own hell when her Armour was taken away, which you can read about in the February 20^th blog post here.

And sud­denly, I get an email from Sheila, infor­ming me that the RCP stand is as bad as it was three months ago for her and other thy­roid patients.

Sheila sta­tes: This is abso­lu­tely unbe­lie­va­ble that out of the hun­dreds of refe­ren­ces we sent to the Royal College of Phy­si­cians to show their gui­de­line to be fla­wed, they have taken no account of one sin­gle one of them. They are publishing their pre­vious gui­dance without one since change. The world has gone mad.

Dear Sheila, Further to my email of 6 April, the com­ments and mate­rials recei­ved by the College have been revie­wed. This posi­tion sta­te­ment or gui­dance (not a gui­de­line) was pro­du­ced on behalf of the Royal College of Phy­si­cians, in par­ti­cu­lar its Patient and Carer Net­work and the Joint Spe­cialty Com­mit­tee for Endoc­ri­no­logy and Dia­be­tes; the Asso­cia­tion for Cli­ni­cal Bioche­mistry; the Society for Endoc­ri­no­logy; the Bri­tish Thy­roid Asso­cia­tion; the Bri­tish Thy­roid Foun­da­tion Patient Sup­port Group and the Bri­tish Society of Pae­dia­tric Endoc­ri­no­logy and Dia­be­tes and is endor­sed by The Royal College of Gene­ral Prac­ti­tio­ners. The Pre­si­dent has asked me to let you know that this review has not resul­ted in any chan­ges to that sta­te­ment.  It should be noted that it is about the treat­ment of pri­mary hypothy­roi­dism and does not prec­lude other treat­ments for excep­tio­nal cases by spe­cia­list endoc­ri­no­lo­gists who can make clear to patients any asso­cia­ted risks. Refe­ren­ces sup­por­ting the sta­te­ment are lis­ted below. Yours sin­ce­rely, Catha­rine Perry Admi­nis­tra­tor •   Diag­no­sis and treat­ment of pri­mary hypothy­roi­dism. BMJ 2009;338:b725 •   Vaidya B, Pearce S. A Cli­ni­cal Review of the mana­ge­ment of hypothy­roi­dism in adults. BMJ 2008;337:a801. This con­tains refe­ren­ces for 35 artic­les and sta­tes that Armour thy­roid is of no pro­ved addi­tio­nal bene­fit to levothy­ro­xine. • The Lan­cet Volume 363, Issue 9411, Pages 793 — 803, 6 March 2004.  This covers the his­tory, epi­de­mio­logy, pathophy­sio­logy, and cli­ni­cal diag­no­sis and mana­ge­ment of hypothy­roi­dism and is writ­ten by Caro­line GP Roberts and Paul Laden­son of Johns Hop­kins Uni­ver­sity School of Medi­cine, Bal­ti­more, USA.  This review, which refe­ren­ces 164 cli­ni­cal artic­les, sta­tes that the treat­ment of choice for hypothy­roi­dism is levothy­ro­xine sodium (thy­ro­xine) and does not refer to Armour thy­roid. •  Baloch Z, Cara­yon P, Conte-Devolx B, et al. Labo­ra­tory medi­cine prac­tice gui­de­li­nes. Labo­ra­tory sup­port for the diag­no­sis and moni­to­ring of thy­roid disease.Thyroid 2003;13:3 – 126. •  Asso­cia­tion of Cli­ni­cal Bioche­mists BTA, Bri­tish Thy­roid Foun­da­tion. UK Gui­de­li­nes for the use of thy­roid func­tion tests. http://acb.org.uk/docs/tftguidelinefinal.pdf •  Surks MI. Ortiz E, Daniels GH, et al. Subc­li­ni­cal thy­roid disease: scien­ti­fic review and gui­de­li­nes for diag­no­sis and mana­ge­ment. 2004;291:228 – 238.

And as your peruse the six refe­ren­ces above which they use to defend their tunnel-visioned, moro­nic posi­tion, you rea­lize that you, your words, and your positive-outcome expe­rience on desic­ca­ted thy­roid, as well as the use of far bet­ter labs, is about as impor­tant within the UK’s latest medi­cal pro­noun­ce­ment as is dirt on the bot­tom of a rus­ted buc­ket in the middle of an empty field in nowhere. Yup.

Or as Harold Ship­man sta­ted about the RCP’s gui­de­li­nes: What a bri­lliant wheeze.

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

See below on the poten­tial impor­tance of potas­sium in your health and well-being. And on the May 7^th post about the party being over with Forest Phar­ma­ceu­ti­cals, com­ments con­ti­nue to come in about expe­rien­ces with the “new” Armour.

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.

There’s an over-the-counter weight loss drug called Alli made by the huge phar­ma­ceu­ti­cal Gla­xoS­mith­Kline. You can see it on the shel­ves of most any Wal Mart or local drug store.  It’s also called Orlis­tat which is mar­ke­ted under the trade name of Xeni­cal by the phar­ma­ceu­ti­cal Roche.

It’s pro­mo­ted as safe, and it works by limi­ting the absorp­tion of fats from what you eat, which in turn redu­ces your intake of calo­ries.  (What has always tur­ned me off about Alli or Orlis­tat is that is crea­tes oily and loose stools. Bleck. )

Meds­cape just today repor­ted about an FDA war­ning: the Use of orlis­tat may dec­rease L-thy­ro­xine (T4) absorp­tion and lead to hypothy­roi­dism. Cli­ni­cians are advi­sed to admi­nis­ter levothy­ro­xine and orlis­tat at least 4 hours apart…

Oh jolly. So now we have the FDA giving a war­ning about Alli cau­sing pro­blems with “thy­ro­xine” use,  yet it’s the VERY “thy­ro­xine” use that cau­ses a cer­tain large per­cen­tage of those using Alli to need to use it in the first place. You can see that rea­lity in the ques­tions about the hypo pro­blem on the Alli forum.  i.e They are all on thyroxine!

Hit­ting my head against the wall.

P.S. Repor­ted in Endoc­rine Today and from just a month ago, and article tit­led Hypothy­roid patients requi­red inc­rea­sed levothy­ro­xine during preg­nancy.  Zom­bie Endoc­ri­no­lo­gists. Zom­bies. That’s like having an article tit­led Sick patients need more blood-letting. i.e LEVOTHYROXINE SUCKS AND SHOULD BE IN THE PAST just as much as blood-letting.  WAKE UP ENDOCRINOLOGISTS!! WAKE UP!!

*Check out patient res­ponse to the newly for­mu­la­ted Armour below, and add your own comments.

Before my thy­roid disease of hypothy­roi­dism was dis­co­ve­red, I had horri­fic and debi­li­ta­ting con­se­quen­ces from exer­cise or any acti­vity.  You can read about it all here or even more detail in the Intro­duc­tion of the patients-to-patients Stop the Thy­roid Mad­ness book.

When my so-called “bor­der­line hypothy­roid” was dis­co­ve­red by age 30, I thought whoo-hooo, I’ll finally get rid of this strange night­mare whe­ne­ver I tried to do ANYTHING.  I was put on Synth­roid and my anti­ci­pa­tion for a bet­ter life was profound.

But my hope was dashed. Not only did my body con­ti­nue to ove­rreact to acti­vity, it got worse over time.  Horribly worse.  Nearly twenty years after I had star­ted on a T4-only medi­ca­tion, and was told by one doc­tor after another that my pro­blem was not my thy­roid, I was going to apply for social secu­rity disability.

But they were all dead wrong. Sure, turns out I have a form of Dysau­to­no­mia, a mal­func­tion and ove­rreac­tion of my auto­no­mic ner­vous sys­tem, cau­sing my body to far ove­rreact to stress. But remai­ning hypothy­roid, as we all do on the sucky t4-only medi­ca­tions, had made it far worse. And I pro­ved it. When I switched to Armour desic­ca­ted thy­roid in 2002 and rai­sed it accor­ding to what patients have lear­ned, a miracle occu­rred.  My severe auto­no­mic reac­tions made an almost com­plete tur­na­round.

And my expe­rience of change or impro­ve­ment when it comes to other disea­ses or con­di­tions has been sha­red by others.

Last week, I recei­ved an email from a man whose brother has MS – Mul­ti­ple Scle­ro­sis.  And though Armour has not taken his MS away, it allo­wed him to move from this wheelchair to a wal­ker! That is impressive.

So I am left won­de­ring:  what other con­di­tions or disea­ses, which are uni­que in them­sel­ves, are wor­se­ned being undiag­no­sed thanks to the lousy TSH lab test or the ina­de­quate treat­ment of Synth­roid, Levoxyl, levothy­ro­xine, Eltro­xin and all other T4-only medi­ca­tions? It’s awful to think about it.

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

With 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.com,  www.drugs.com,  www.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.