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I recently dis­co­ve­red a very humo­rous and appropo medi­cal blog on the net, writ­ten by a Uni­ted King­dom Gene­ral Prac­ti­tio­ner who wisely stays incog­nito. His blog is called The Job­bing Doctor.

And his most recent and humo­rously bri­lliant post is tit­led Hairy legs are bet­ter than blood tests! He desc­ri­bes his occa­sio­nal con­fu­sion when blood tests don’t agree with the patients symptoms.

Says the UK doc: “The text­books teach that the level of cir­cu­la­ting thy­roid hor­mo­nes (which are called T3 and T4) are inver­sely rela­ted to the Thy­roid Sti­mu­la­ting Hor­mone (TSH). If your T3 and T4 are low, your TSH will be high: this sug­gests an unde­rac­tive thy­roid gland. If the T3 and T4 are high and the TSH is low, then you have an ove­rac­tive thy­roid gland. That’s easy, huh!”

But his con­fu­sion sprang forth when a patient’s labs sho­wed “a highish TSH, T4, and a nor­mal T3.” Yet appa­rently her symp­toms didn’t imply there was any pro­blem, so he chose to do nothing as far as chan­ging her treatment.

A month later at her next appoint­ment, this patient expres­sed her appro­val that he didn’t change anything…because her leg hair and eye­brows were coming back.

And his conc­lu­sion?  “Pah! Who needs blood tests!”

Job­bing Doc­tor, you are dis­co­ve­ring what thy­roid patients have been lear­ning over and over for years: it’s SYMPTOMS (or lack up) which need to pull the cart, NOT lab­work. Sure, we love our lab­work. They can give clues to areas where our bodies are screa­ming for help.  But they defi­ni­tely do NOT tell the whole story.

Look at the igno­ra­mus TSH lab test. Count­less patients have wal­ked into their doc­tors offi­ces with clear and obvious hypothy­roid symp­toms – and des­pe­rate for a diag­no­sis – yet the ink spot on the office piece of paper called the TSH lab result proc­laims they are “nor­mal”. And that dubious “nor­mal” diag­no­sis can go on for years before it rises high enough to reveal what was already there by SYMPTOMS.

Or, while on thy­roid medi­ca­tion, patients will have a lame­brain “nor­mal” TSH lab result, yet will con­ti­nue to have their own brand and degree of con­ti­nuing hypothy­roid symp­toms which the clue­less doc­tor dis­mis­ses as an hys­te­ric female inter­pre­ta­tion, motherhood, stress, a need for psycho­lo­gi­cal help.…or just “something else”. Uh huh.

In fact, Job­ber Doc­tor, patients have lear­ned that when they are opti­mal (on desic­ca­ted thy­roid), along with opti­mal ferri­tin and cor­ti­sol), they will gene­rally have a free T3 in the upper part of the range, and a SUPPRESSED TSH, with no symp­toms of hyperthy­roi­dism.  That is gene­ral, and there can be some excep­tions, but ove­rall, it has spo­ken volu­mes to patients on how ina­de­quate thy­roid lab tests can be.  i.e. being in the “nor­mal” range — anywhere in the nor­mal range – can be mean squat.

Thanks for a great post,  UK Job­ber Doc. And P.S.  Desic­ca­ted thy­roid is an even bet­ter treat­ment than thy­ro­xine.

*Want to be infor­med of these blog posts? Curious what’s on my mind? Just use the Noti­fi­ca­tions at 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.

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.