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An editorial response from Thyroid Patient Activist Janie Bowthorpe

I am plea­sed to note that Mary Sho­mon of about.com,  who in her blog post on Thurs­day, April 22, 2010, has not only sof­te­ned her wor­ding about self-treatment by hypothy­roid patients, but has also writ­ten expres­si­vely con­cer­ning surroun­ding issues. These are also issues which I pre­sen­ted in two blog posts ear­lier this week con­cer­ning the immense pro­blem with doc­tors as expres­sed by patients, and self-treatment.

Good for Mary!

As wit­nes­sed by Sheila Turner’s exce­llent edi­to­rial towards those who cri­ti­cize self-treatment, as well as angst expres­sed by many patients toward those who cri­ti­cize,  self-treatment is an impor­tant issue and can’t be dilu­ted down as simply “self-destructive” in our current medi­cal climate.

The follo­wing are dif­fe­ren­ces in how this is vie­wed, though, with one com­mon thought:

  • Is self-treatment one  of the “most con­tro­ver­sial” issues with thy­roid patients? The ans­wer is “only to those who make it so”. Far more trou­bling to thy­roid patients is a medi­cal esta­blish­ment which worships a medi­ca­tion which has left millions under­trea­ted, and which makes a pitui­tary hor­mone lab called the TSH as if it’s from God Almighty. Equally as trou­bling to patients are doc­tors whom they report as con­des­cen­ding, close-minded, robo­tic, and/or igno­rant about issues that keep thy­roid patients sick – low ferri­tin, adre­nal fati­gue, and more. Self-treatment is only the symp­tom of a much lar­ger, more con­tro­ver­sial problem.
  • Does self-treatment have “obvious draw­backs” for thy­roid patients who feel for­ced to do it? The ans­wer is “yes”, but no dif­fe­rent and pro­bably far less than the “obvious draw­backs” patients face with clue­less doc­tors.  The com­ments on my blog posts are bloa­ted with patients who have been left sick, or made sic­ker, by one doc­tor, after another doc­tor, after one more.  It’s not a pretty picture.
  • Is there a “risk of under­treat­ment” for thy­roid patients who self-treat? Yes, but pro­bably far less  than the huge num­ber of patients who report being left “under­trea­ted” by doc­tors who are blind to the pro­blems of T4, or doc­tors who remain clue­less about the ina­de­quacy of trea­ting by the TSH.
  • Is the “grea­test con­cern” about self-treatment the pro­blem of being “over-medicated”? You betcha. But in the vast majo­rity of these unfor­tu­nate cases with patients who choose to self-treat, the pro­blem is undiag­no­sed or under­trea­ted low cor­ti­sol and/or low ferri­tin, which results in thy­roid hor­mo­nes poo­ling in the blood and crea­ting hyper-like symp­toms.  This is a risk for self-treatment.
  • Have “dozens of thy­roid patients” ended up in emer­gency rooms due to over-medication? “Dozens” is spe­cu­la­tion.  It may be more rea­lis­tic to state that “some”, yes, have sta­ted this unfor­tu­nate out­come when they made the choice.  But research and com­ment all over the inter­net shows anyone that hun­dreds of thou­sands of all patients can end up in the emer­gency room due to poor doc­to­ral deci­sions, or bad reac­tions to phar­ma­ceu­ti­cal medi­ca­tions which doc­tors love to presc­ribe. Ending up in an emer­gency room is not solely con­nec­ted to self-treatment.
  • Do “patients face many major obs­tac­les that pre­vent them from get­ting accu­rate and effec­tive thy­roid diag­no­sis and treat­ment?” Yes! That is where Mary is in agree­ment with me with her six exce­llent  points, inc­lu­ding the tra­gic situa­tion in the UK. And here are 10 rea­sons patients are frus­tra­ted, angry and sick.
  • Has one nega­tive jour­nal article about someone who self-treated “resul­ted in desic­ca­ted thy­roid  get­ting grea­ter scru­tiny by the FDA?” The ans­wer can easily be:  no worse than the body of patients who were made fear­ful that the FDA was ban­ning desic­ca­ted thy­roid, and who follo­wed a strong cam­paign to con­tact the FDA about desic­ca­ted thy­roid. I was also per­so­nally told by two phar­ma­ceu­ti­cal repre­sen­ta­ti­ves that this action to con­tact the FDA made the pharms very uncom­for­ta­ble and put too much atten­tion on desic­ca­ted thy­roid. Time will tell, but it’s not help­ful to blame anything.
  • Does “acti­vely pro­mo­ting self-medication” with natu­ral desic­ca­ted thy­roid “work against thy­roid patient inte­rests”. The ans­wer to this loa­ded ques­tion resi­des in who you ask. Whether “acti­vely pro­mo­ted” or simply “read about”, there seems to be a body of patients who report that fin­ding out about desic­ca­ted thy­roid, and fee­ling for­ced to self-treat because of not fin­ding any doc­tor to help them, was one of the best deci­sions they ever made.

And to the last com­ment above, and since there have been “impli­ca­tions”, I want to unders­core (and ad nau­seum) that the patient-to-patient Stop the Thy­roid Mad­ness was not crea­ted as a self-treatment site, nor does it “acti­vely pro­mote” it.  STTM is a site with a goal to edu­cate patients who can, in turn, take that infor­ma­tion into their doc­tors offi­ces and push for change. And it’s been wor­king, one doc­tor at a time, as wit­nes­sed by patients who report those doc­tors on patient groups, and by emails I get from some of those doctors.

But it’s also clear that those who self-medicate may be using STTM, as well as many other web­si­tes and books out there by doc­tors, advo­ca­tes and non-professionals alike, to help them. So at least there is edu­ca­tion out there to help those who choose this, even if none was crea­ted for that purpose.

Sum­mary

There are impor­tant dif­fe­ren­ces in opi­nion, and much more to the story as I out­li­ned above.

But the bot­tom line is this: for up to 60 years, hun­dreds of millions of thy­roid patients around the world have been sub­jec­ted to

  1. a medi­ca­tion called thy­ro­xine which has left a heap of lin­ge­ring hypothy­roid symp­toms,
  2. a new debi­li­ta­ting con­di­tion like adre­nal fati­gue,
  3. a lab test (TSH) which has dela­yed diag­no­sis for years or kept patients under­trea­ted, and
  4. too many doc­tors who aren’t up to speed about most any of this, and have left patients frus­tra­ted, angry and still sick.

And all the above is a far worse sce­na­rio which only pushes some patients to self-treat as a side-effect. But if  you aren’t totally wiped out finan­cially and emo­tio­nally in trying to find an infor­med doc, two sug­ges­tions: http://www.stopthethyroidmadness.com/how-to-find-a-good-doc as well as pos­ting your city/state in the sub­ject line of patient groups here: http://www.stopthethyroidmadness.com/talk-to-others

P.S. Please note that you will never see this blog, or this web­site, kno­wingly allow non-professional,  nega­tive, nasty, false, abu­sive and/or pro­found slan­der about a collea­gue, as has been done elsewhere. :(



  • Want to keep track of these “fringe web­site” blog posts? ;-) Curious what’s on Janie’s mind? Use the noti­fi­ca­tion on the lower left of the links, called a News­let­ter, or an RSS Feed.
  • The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! Great BUMPER STICKERS, too. Spread the word – YOU may make a dif­fe­rence in someone’s life.
  • Check out the patient-to-patient book with even more detail (and which doc­tors seem to res­pect more than websites).
  • Need to unders­tand all your best options for thy­roid treat­ment? Go here.
  • Keep infor­med of each live Thy­roid Patient Com­mu­nity Call on Talkshoe by sig­ning up as a follo­wer.

Should thyroid patients avoid self-treatment at all costs??

(Note: this is a long post, but will be worth every penny if you read it all!)

When STTM first put out its shin­gle in Decem­ber of 2005 (with most of what you see today going up in ’06 and ’07 with con­ti­nual addi­tions),  my goal with this site was sim­ple: to edu­cate thy­roid patients.

And as I saw it, by edu­ca­ting patients on what we had been lear­ning, patients could in turn, take that infor­ma­tion into their doc­tors offi­ces and push for change. And it’s been wor­king, slowly. We now have more doc­tors than ever before who know about desic­ca­ted thy­roid and are willing to presc­ribe it, even if they are the mino­rity. STTM has a page on how to try fin­ding one of those good docs.

But as I wrote about this fact in my pre­vious post, cer­tain patients can still find them­sel­ves frus­tra­ted, angry and sick because of doc­tors. It’s not a pretty pic­ture for some.

I am lucky, as I’ve always mana­ged to have a fair doc­tor to work with, without com­pli­ca­ted issues. But a lot of patients aren’t as lucky.  They either can’t find a doc­tor to treat them correctly after trying repea­tedly, or they simply can’t afford to keep dri­ving to find a good doc (with no pro­mi­ses that they will get the good doc they des­pe­ra­tely need any­way). As a result, many thy­roid patients report being for­ced to self-treat.

Even though STTM was never crea­ted as a self-treatment site, I am aware that some patients use it that way.  And I can never con­demn them. Gran­ted, a few who make their own choice to self-treat can run into pro­blems, most espe­cially from undis­co­ve­red or undiag­no­sed low ferri­tin or low cor­ti­sol. But it’s a choice they seem to make out of desperation.

The follo­wing  post is by  Guest Blog pos­ter and UK’s thy­roid patient advo­cate Sheila Tur­ner of TPA-UK.  These are her cou­ra­geous thoughts con­cer­ning self-treatment, and her angst against anyone who tells patients not to do so.  Ove­rall, UK patients have a very tough situa­tion in the UK with doc­tors, but so do the vast majo­rity of patients around the world, as well as US patients. See what you think…

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

It’s not uncom­mon to be told as a suf­fe­ring and debi­li­ta­ted thy­roid patient to never self-diagnose, never self-treat, never self-monitor.

And in an ideal world, we could take those admo­ni­tions on. But we are not living in an ideal world.

You might as well tell every­body with ill health to put up with wha­te­ver they are suf­fe­ring and leave their health in the safe hands of our ‘won­der­ful’ doc­tors whom we can trust impli­citly.  Sadly, many doc­tors have little (or no) edu­ca­tion in the wor­kings of the thy­roid system.

Or, you might just try tou­ring the country until you find one who will help. Well, if you have the energy and the money to do that, it could take a heck of a long time before fin­ding such a good doc­tor —  indeed, IF you ever find such a doctor.

I run a very suc­cess­ful Inter­net Thy­roid Sup­port group, plus web site for thy­roid disease, and I have seen at first hand (and expe­rien­ced it myself) the night­mare of having to put up with the terri­ble suf­fe­ring cau­sed by Doctors.

In the UK, for exam­ple, it is orga­ni­za­tions such as the Royal College of Phy­si­cians and the Bri­tish Thy­roid Asso­cia­tion who have terri­fied NHS doc­tors so much that they now no lon­ger presc­ribe any T3 hor­mone con­tai­ning pro­ducts, neither natu­ral nor synthe­tic, for fear of being repor­ted to the GMC  regu­la­tory body with the threat of losing their career and livelihood.

One com­ment I hear from those who con­demn self-treatment is the pro­blem of over-medicating. In rea­lity, it is the rec­kless prohi­bi­tion of all T3-containing drugs that cau­ses car­diac arrhyth­mia and risk of  sud­den death -  which would amount to at least mans­laugh­ter, and might even cons­ti­tute mur­der if the out­come is strictly fore­seea­ble - which it is. It is NOT patients who should be cri­ti­ci­zed. They have been dri­ven to buying presc­rip­tion medi­ci­nes for thy­roid and adre­nal insuf­fi­ciency. Cri­ti­ci­zing self-treatment is an outra­geous claim and one that the medi­cal regu­la­tors would no doubt be deligh­ted to hear. Seems that not only are doc­tors beco­ming sorely afraid of the Regu­la­tors, those who con­demn self-treatment are also falling into the same trap.

The “basic pre­mise” that under­lies my own pur­pose and advo­cacy is to help those being left to suf­fer because the medi­cal regu­la­tors and govern­ment are refu­sing to give a pro­per diag­no­sis — and for those who do get a diag­no­sis, giving them levothy­ro­xine sodium-only as a thy­roid hor­mone replacement.

Whe­ne­ver a new mem­ber comes to TPA, we encou­rage them to read, read and read again and to look at the infor­ma­tion in our FILES sec­tion which is there for all to see. We tell them about the asso­cia­ted con­di­tions that go along with being hypothy­roid such as low adre­nal reserve, sys­te­mic can­di­dia­sis, mer­cury poi­so­ning and ask them to request blood tests from their doc­tor to see if their levels are low in the refe­rence range for ferri­tin, vita­min B12, vita­min D3, mag­ne­sium, folate, cop­per and zinc. We have infor­ma­tion on the rea­sons they need to check these and if any of these are a pro­blem, make sure they are aware of just how essen­tial it is that they eli­mi­nate these con­di­tions, one by one, before star­ting thy­roid hor­mone repla­ce­ment – such con­di­tions are NOT auto­ma­ti­cally chec­ked by NHS doc­tors – and they put their patients at great risk by auto­ma­ti­cally presc­ri­bing levothyroxine.

We all know of the serious rami­fi­ca­tions for those patients who are not being given a correct diag­no­sis or treat­ment. Howe­ver, it is the endoc­ri­no­lo­gists and medi­cal regu­la­tors who are guilty of cau­sing much of the unne­ces­sary suf­fe­ring, not those patients who are dri­ven to self diag­nose, self treat and self moni­tor, as those who cri­ti­cize self-treatment would have us believe.

Mains­tream doc­tors do not appear to be even aware of the many com­mon and often undiag­no­sed symp­toms and dan­ge­rous con­se­quen­ces of low thy­roid. These inc­lude: serious men­tal pro­blems, sei­zu­res, heart disease, dia­be­tes inc­lu­ding mis­diag­no­sis and com­pli­ca­tions, cons­ti­pa­tion resul­ting in colon can­cer, all female pro­blems (due to high amounts of dan­ge­rous forms of oes­tro­gen), inc­lu­ding: tumours, fibroids, ova­rian cysts, PMS, endo­me­trio­sis, breast can­cer, mis­ca­rriage, heavy periods and cramps, blad­der pro­blems lea­ding to infec­tions, anae­mia, ele­va­ted CPK, ele­va­ted crea­ti­nine, ele­va­ted tran­sa­mi­na­ses, hyper­cap­nia, hyper­li­pi­de­mia, hypogly­ce­mia, hypo­na­tre­mia, hypo­xia, leu­ko­pe­nia, res­pi­ra­tory aci­do­sis and others.…

If suf­fe­rers of the symp­toms are NOT get­ting a pro­per diag­no­sis and the thy­roid hor­mone repla­ce­ment that would give them back their life and health through mains­tream doc­tors, how on earth would you recom­mend they do this, apart from scou­ring the country to find a doc­tor elsewhere who would help them, or recom­men­ding they get enough money together to see a pri­vate thy­roid spe­cia­list. Do you REALLY have such com­plete faith in the medi­cal pro­fes­sion to know that we should ALL leave our thy­roid health in their hands, sit back and do nothing – and pro­bably just wait to die? How can you recom­mend that they do NOT buy presc­rip­tion medi­ca­tions and should not self-medicate, self treat or self moni­tor when there is NO other option left open to them.

If those who cri­ti­cize self-treatment have per­so­nally heard from “DOZENS” of peo­ple who have follo­wed the “inc­rease my own dose of natu­ral thy­roid” self medi­ca­tion approach, then yes, something is seriously wrong with the ‘teachings’ or advo­cacy of such groups. Edu­ca­tion should be encou­ra­ged by all, and if mem­bers do not unders­tand the rea­sons why they need to take great care, such expla­na­tions should be given in such a way that they understand.

I rarely hear of mem­bers ending up in Emer­gency Rooms batt­ling poten­tially fatal heart arrhythmia’s, atrial fibri­lla­tion, and/or ending up in worse health than before, inc­lu­ding long-term and per­ma­nent heart damage through self-treatment. I have heard of many NHS patients being admit­ted to A and E, who had been trea­ted (or not) by mains­tream doc­tors who refu­sed them the correct the­rapy their symp­toms needed.

In good cons­cience, I do recom­mend that thy­roid patients self-diagnose, self-medicate and self-treat if they are being left to suf­fer, because orga­ni­za­tions such as the RCP, BTA TSH refe­rence range is so huge that they will never go outside of it. This refe­rence range is 0.5 to 10.0 in the UK – pro­bably the widest in the world. Then, we have to put up with the fact that the only thy­roid func­tion test that will be done is the TSH –  and doc­tors will not test Free T4 in a lot of cases, never mind free T3 level. Also, NHS Patho­logy labs refuse to test free T3 even if the doc­tor has spe­ci­fi­cally reques­ted it. So, many of us will NEVER get a pro­per diag­no­sis – being left to suf­fer their unne­ces­sary symp­toms for years and become wheelchair/bed bound in many cases, having to leave paid employment.

Such patients are told they have a ‘func­tio­nal soma­to­form disor­der’ when their TFT’s are nor­mal, when they con­ti­nue to com­plain of symp­toms – or –  those who are lucky enough to get a diag­no­sis, who are trea­ted with levothy­ro­xine only yet still com­plain of debi­li­ta­ting symp­toms are told also “you have a func­tio­nal soma­to­form disor­der” or “your symp­toms are non-specific” .

What mains­tream doc­tors do not recog­nize is that thy­roid func­tion tests ONLY test the amount of thy­roid hor­mone being sec­re­ted by the thy­roid gland.  TFT’s (more correctly should be called Thy­roid GLAND func­tion tests”, do not test to show whether there is periphe­ral resis­tance to the thy­roid hor­mo­nes at the cellu­lar level. This is not due to a lack of thy­roid hor­mo­nes sec­re­ted by the gland. Blood tests do NOT detect Type 2 hypothy­roi­dism. Type 2 is usually inhe­ri­ted. Howe­ver, envi­ron­men­tal toxins may also cause or exa­cer­bate the pro­blem. The per­va­si­ve­ness of Type 2 has yet to be recog­ni­zed by mains­tream medi­cine, but already is in epi­de­mic pro­por­tions. I think many suf­fe­rers of the symp­toms of hypothy­roi­dism know very much more than their medi­cal prac­ti­tio­ners. I do know which road I would like to follow – that is to find an exce­llent doc­tor I could trust impli­citly, but sadly, the ONLY road many of us have to follow to get back nor­mal health is the one where we have to self medicate.

Please do NOT blame patients who are dri­ven to self diag­nose and medi­cate as being the rea­son why the US govern­ment, or any other govern­ment for that mat­ter, are now eli­mi­na­ting the avai­la­bi­lity of natu­ral thy­roid and synthe­tic T3. You are being suc­ked into belie­ving what they want you to believe.

Levothy­ro­xine is a synthe­tic medi­ca­tion that can be paten­ted, and has made billions of pounds for the Big Pharma and for the regu­la­tors of hypothy­roid gui­de­li­nes. Natu­ral thy­roid pro­ducts can­not be paten­ted. Should doc­tors presc­ribe either synthe­tic or natu­ral T3, the majo­rity of suf­fe­rers of the symp­toms of hypothy­roi­dism would regain their nor­mal health – Big Pharma would suffer.

You should perhaps read the book “Dirty Medi­cine” by Mar­tin J Wal­ker if you have not already read it. Those who cri­ti­cize self-treatment appear to be accu­sing all those suf­fe­ring symp­toms of hypothy­roi­dism who have been dri­ven to buying medi­ca­tions without presc­rip­tion and self trea­ting as making it worse for the rest of those suf­fe­ring. It is NOT them who are abu­sing T3. If a T3 hor­mone con­tai­ning pro­duct was pro­perly presc­ri­bed, there would be NO NEED FOR PATIENTS TO BE SELF MEDICATING.

Self medi­ca­ting, wha­te­ver drug we are taking, whether using a T3 hor­mone con­tai­ning pro­duct or not, is always risky and patients must be fully edu­ca­ted in its use. Howe­ver, self medi­ca­ting with any drug runs risks, but I would rather self medi­cate with the chance of get­ting my health back than lea­ving my health in the hands of totally incom­pe­tent doc­tors –  incom­pe­tent because the teachers in our medi­cal schools are incompetent.

For those who are being left to die, without the treat­ment that will make them well, do-it-yourself medi­ca­tion is the only option left open to them. Would you really deny them this?  Lea­ving patients without the thy­roid hor­mone they need is appa­lling and one of the rea­sons TPA is cam­paig­ning to bring about chan­ges in the diag­no­sing and treat­ment of the symp­toms of hypothyroidism.

It can be appre­cia­ted to say to work with the right doc­tor, but what do you recom­mend if patients can­not find the ‘right’ doc­tor?? Perhaps you should all come over here to the UK and help those suf­fe­rers in fin­ding the right solu­tion and offer to help them help to find a “good doctor”.

Sadly, there are never any solu­tions given or alter­na­tive to self diag­no­sing, self-treating or self-monitoring, other than to “find a good doc­tor”. This does not help Inter­net thy­roid sup­port forum members.

Sheila
http://www.tpa-uk.org.uk/


  • Want to keep track of these “fringe web­site” blog posts? ;-) Curious what’s on Janie’s mind? Use the noti­fi­ca­tion on the lower left of the links, called a News­let­ter, or an RSS Feed.
  • The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! Great BUMPER STICKERS, too. Spread the word – YOU may make a dif­fe­rence in someone’s life.
  • Check out the patient-to-patient book with even more detail (and which doc­tors seem to res­pect more than websites).
  • Need to unders­tand all your best options for thy­roid treat­ment? Go here.
  • Keep infor­med of each live Thy­roid Patient Com­mu­nity Call on Talkshoe by sig­ning up as a follo­wer.

10 reasons many thyroid patients are still frustrated, angry, and sick

It’s a con­ti­nuing tra­vesty, and you see it in patient groups.

i.e. many patients still find them­sel­ves sick and disa­bled, stum­bling mise­rably from one unin­for­med doc­tor to another…in spite of the won­ders of natu­ral desic­ca­ted thy­roid, the tes­ti­mony of chan­ged lives, the edu­ca­tion of patients thanks to the STTM web­site & book, and a small but gro­wing body of wise doc­tors who seem to be “get­ting it”,

So what’s the pro­blem?? It lays with our doc­tors and the entire medi­cal pro­fes­sion.

  1. Heavy-handed con­trol over your medi­ca­tion: You go to pick up your presc­rip­tion, and find your medi­ca­tion has been lowe­red by your doc­tor without your agree­ment or know­ledge, as hap­pe­ned to Terry here (scroll down to find her post).
  2. Igno­rance about adre­nal fati­gue and treat­ment: You clearly have an adre­nal pro­blem, and one doc­tor dis­mis­ses its exis­tence, another doc­tor poo-poos the saliva test, another doc­tor tells you cor­ti­sol sup­ple­men­ta­tion is dan­ge­rous, another doc­tor thrusts all his her­bal sup­ple­ments at you, another doc­tor thinks that 5 or 10 mg cor­ti­sol is enough…and on and on and on.
  3. Dis­mis­sing the Ferri­tin test: You want to know what your ferri­tin is, but the doctor’s nurse unders­co­res that they’ve already chec­ked your iron levels, so there’s no need for more testing.
  4. Dis­mis­sing you: You are wise thanks to rea­ding, researching and living in your own body, yet your doc­tor calls you a pro­ble­ma­tic patient on your charts, dis­mis­ses you, or gets angry.
  5. RT3 huh? You have strong sus­pi­cions that your Reverse T3 is too high thanks to adre­nal fati­gue, low ferri­tin, undiag­no­sed glu­ten issues, or other rea­sons, yet this doc­tor refu­ses to test you, that doc­tor says an RT3 excess is rare.
  6. Look at me! Look at me! You make an appoint­ment with that great doc who has a fabu­lous website/book and who shouts that he uses desic­ca­ted thy­roid with a big smile…yet any or all of the above and below occurs with him/her or his “trai­ned” associates.
  7. Con­ti­nued worship of the TSH lab test:  Too many doc­tors still think the TSH lab test is from God Almighty. So when you finally start to feel well on desic­ca­ted thy­roid with a TSH at zero or below…WHAM…you must lower your meds because you are somehow “hyper” in spite of no symp­toms to match.
  8. Phar­ma­ceu­ti­cal addicts: You men­tion your lin­ge­ring hypothy­roid symp­toms, and you are ban­dai­ded with anti-depressants, anti-anxietal meds, sta­tins, BP pills, pain tablets, acid reflux pills, cal­cium for your thin­ning bones…instead of unders­tand that these are ALL side effects of poor treat­ment or undis­co­ve­red issues.
  9. The country you live in: The des­pe­ra­tion of UK thy­roid patients is deep thanks to a thy­roid asso­cia­tion and a College of Phy­si­cians which tigh­tens the screws if a doc­tor dares to presc­ribe a life chan­ging medi­ca­tion with T3 in it.  Or just as frus­tra­ting, having a govern­ment which for­bids desic­ca­ted thy­roid to arrive to you in the mail.
  10. Refor­mu­la­tions and Big Pharma apathy: Forest Labs tur­ned one of the most popu­lar and effec­tive desic­ca­ted thy­roid brand, Armour, into a pill with too much cellu­lose and too little suc­rose , cau­sing a mas­sive return of symp­toms in many, soo­ner or later. RLC also refor­mu­la­ted their Natu­reth­roid, and though some patients still do well on it, others do mise­rably, and we are left won­de­ring WHAT to take. (Thank God for Erfa’s Cana­dian “Thy­roid”, but will we be able to con­ti­nue with this fabu­lous desic­ca­ted thy­roid product?)

And there are more rea­sons you might want to bring up in the Com­ments part of this post.

So you see, it’s no won­der so MANY patients feel for­ced to self-treat, yet they are also con­dem­ned for doing so. I refuse to con­demn them for exactly the rea­sons above.  Petty. All I ask is that we all try to find a good doc, but it may be quite hard when you con­si­der all the above.

All-in-all, we still have  a way to go, baby, and espe­cially with the doc­tors we try so hard to get help from…but can’t.

P.S. Are you brave? Walk into your doctor’s office with the STTM shirt.


  • Want to keep track of these “fringe web­site” blog posts? ;-) Curious what’s on Janie’s mind? Use the noti­fi­ca­tion on the lower left of the links, called a News­let­ter, or an RSS Feed.
  • The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! Great BUMPER STICKERS, too. Spread the word – YOU may make a dif­fe­rence in someone’s life.
  • Check out the patient-to-patient book with even more detail (and which doc­tors seem to res­pect more than websites).
  • Need to unders­tand all your best options for thy­roid treat­ment? Go here.
  • Keep infor­med of each live Thy­roid Patient Com­mu­nity Call on Talkshoe by sig­ning up as a follo­wer.

Question: What do most doctors & lemon cars have in common?

Ans­wer: Most are duds.

On Mon­day, I had an enjo­ya­ble expe­rience with an excep­tion to the lemon cliche:  I was a guest on Dr. Ste­ven F. Hotze’s radio pro­gram Health and Well­ness Solu­tions, broad­cast live from Hous­ton, Texas.  You can lis­ten to a recor­ding of our con­ver­sa­tion here on the lower right under the hea­ding Dr. Hotze Radio in orange.

The com­mer­cials were like flies, zeroing in often and irri­ta­tingly. But we mana­ged to briefly men­tion both Stop the Thy­roid Mad­ness as well as the Hotze Health & Well­ness Cen­ter.

And two things struck me about our friendly chat: first, Hotze men­tio­ned that he star­ted presc­ri­bing natu­ral desic­ca­ted thy­roid in the 1990’s, far ahead of most doc­tors even today!  If only we knew.  And second, he made a quick men­tion of how disap­poin­ting most doc­tors are for patients, refe­rring to the STTM page called Give Me A Break. If you haven’t seen it, or it’s been awhile, you will find it both hila­rious and com­ple­tely sad.

And it all made me pon­der how in 2010, eight years after I per­so­nally found the life chan­ging desic­ca­ted thy­roid,  there are still so many family prac­ti­tio­ners and Endoc­ri­no­lo­gists kee­ping thy­roid patients sick all over the world, even if they mean well, even if they are good peo­ple, even if they do other diag­no­ses and treat­ments correctly.

So on one hand, it’s rea­lity that pro­gress is slow. But on the other hand, the thy­roid treat­ment wall of igno­rance is slowly tum­bling down about bet­ter thy­roid treat­ment thanks to patients who read about it and carry that infor­ma­tion into their doc­tors offices.

So perhaps over time, the lemons who prac­tice bad thy­roid treat­ment will become less and less pro­mi­nent in the name of enligh­ten­ment, wis­dom and LISTENING to patients.

P.S. And by way, if you are lucky enough to have found one of those docs who presc­ribe desic­ca­ted thy­roid, remem­ber that NO doc­tor is all-knowing. YOU live in your own body, and can have your OWN wis­dom and know­ledge. So expect the rela­tionship be a part­nership. And if you can’t get that part­nership, find a bet­ter doc­tor.

Want to read more about natu­ral desic­ca­ted thy­roid? Go here.   To read my own story, go here.


  • Want to keep track of these “fringe web­site” blog posts? ;-) Curious what’s on Janie’s mind? Use the noti­fi­ca­tion on the lower left of the links, called a News­let­ter, or an RSS Feed.
  • The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! Great BUMPER STICKERS, too. Spread the word – YOU may make a dif­fe­rence in someone’s life.
  • Check out the patient-to-patient book with even more detail (and which doc­tors seem to res­pect more than websites).
  • Need to unders­tand all your best options for thy­roid treat­ment? Go here.
  • Keep infor­med of each live Thy­roid Patient Com­mu­nity Call on Talkshoe by sig­ning up as a follo­wer.

A guy’s story: scaring the hell out of him about being on HC cortisol!

FEARSeve­ral years ago, a large per­cen­tage of thy­roid patients on yahoo groups like NTH were figu­ring out that they had adre­nal fati­gue, aka low cor­ti­sol, from years of adre­nals wor­king over­time due to the ina­de­quate TSH lab test, or being on the lousy T4-only medi­ca­tions like Synth­roid, Levoxyl, levothy­ro­xine, Eltro­xin, etc.

Not only does low cor­ti­sol keep desic­ca­ted thy­roid from wor­king well, it also cau­ses all sorts of angst with para­noia, depres­sion, anxiety, easy anger, sen­si­ti­vity to light and/or sounds, rec­lu­si­ve­ness, sleep issues and more.

First, patients dis­co­ve­red the impor­tance of using the 24 hour adre­nal saliva test rather than blood or urine. When low cor­ti­sol was con­fir­med, the treat­ment was using cor­ti­sol, aka hydro­cor­ti­sone, to give them­sel­ves back what their adre­nals were not, to allow thy­roid hor­mo­nes to reach the cells, and to give the poo­ped out adre­nals a rest.

And suc­cess was achie­ved! When all other issues were dis­co­ve­red and trea­ted, patients were finally able to heal their adre­nals with cor­ti­sol use, wean off, and be suc­cess­ful in their con­ti­nued treat­ment with desic­ca­ted thy­roid! That suc­cess con­ti­nues today!

Yet in spite of clear suc­cess in the treat­ment of low cor­ti­sol with sup­ple­men­tal cor­ti­sol in the correct amount for each indi­vi­dual (which can range from 15 to 40 mg gene­rally – men often need the higher end), as well as exce­llent books on the sub­ject by Wil­son, Peat­field, Jef­fries and the STTM book, patients like RD below still encoun­ter doc­tors who fill their minds with all sorts of fear and warnings:

I bought your book and later on I dis­co­ve­red your web­site which are both great. They are a superb source of infor­ma­tion and sup­port for thy­roid and adre­nal fati­gue suf­fe­rers. Thank you so much!

Per­so­nally I got adre­nal fati­gue by a sus­tai­ned lack of sleep for seve­ral years (crying babies).  I found a doc­tor who presc­ri­bed Hydro­cor­ti­sone (17.5 mg/day, 5 – 5-5 – 2.5), Flu­dro­cor­ti­sone, DHEA and Tes­tos­te­rone. Symp­toms disap­pea­red in about 2 weeks.

A first attempt to wean off after 6 months made some serious symp­toms reap­pear very quickly, so I retur­ned to the ori­gi­nal dose.

It is very stress­ful that many esta­blished doc­tors (our family doc­tor, and my wife’s thyroid-endocrinologist) are sca­ring me like hell that I am taking HC. They are saying I am des­tro­ying my body and I will never suc­ceed in wea­ning off HC.

My wife is a T4-only thyroid-patient with low-cortisol symp­toms. She also has been sca­red about des­si­ca­ted thy­roid and HC. Rea­ding your book I was howe­ver con­vin­ced she could bene­fit a lot from a bet­ter treatment…

Keep up the good work, as patients we are really left alone in the dark by our doctors…

And unfor­tu­na­tely, it’s true. Thy­roid and adre­nal patients are left in the dark by many doc­tors about a variety of issues rela­ted to bet­ter thy­roid treat­ment, adre­nal issues, low ferri­tin, and more.  So here’s where you can read more, and in turn, take this impor­tant infor­ma­tion into your doc­tors offices:

  • All about the pro­blem of adre­nal fatigue
  • How to treat
  • Symp­toms of having an adre­nal problem
  • The STTM book, which not only has more detail, but can be taken right into the doctor’s office
  • Talk to other patients, inc­lu­ding a group tar­ge­ted for adre­nal fatigue

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

Dr.JohnCLoweIf you mis­sed the exce­llent Part 2 with researcher Dr. John C. Lowe last Thurs­day eve­nings, you can lis­ten to the recor­ding, as well as sign up to be a Follo­wer of the Thy­roid Patient Com­mu­nity Call, here.


  • Want to keep track of these “fringe web­site” blog posts? ;-) Curious what’s on Janie’s mind? Use the noti­fi­ca­tion on the lower left of the links, called a News­let­ter, or an RSS Feed.
  • The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! Great BUMPER STICKERS, too. Spread the word – YOU may make a dif­fe­rence in someone’s life.
  • Check out the patient-to-patient book with even more detail (and which doc­tors seem to res­pect more than websites).
  • Need to unders­tand all your best options for thy­roid treat­ment? Go here.
  • Keep infor­med of each live Thy­roid Patient Com­mu­nity Call on Talkshoe by sig­ning up as a follo­wer.
Do NOT follow this link or you will be banned from the site!