* You are viewing the archive for the ‘Thyroid treatment’ Category

A continuing MEDICAL SCANDAL which is just too close to home and I grieve. WAKE UP DOCTORS!!

Tonight was a beau­ti­ful night to do my aero­bic wal­king. It had pou­red this after­noon for 30 minu­tes, so the early eve­ning air was slightly cool and very clean.

And on the last leg of my jour­ney, I stop­ped and said to Car­lin as she was wal­king out of her front door “Where you have been lately? I haven’t seen you out wal­king with your husband.”

Car­lin and her hus­band Clint are pro­bably in their late 70’s – both vibrant indi­vi­duals and fre­quent wal­kers in the same area.

“Well”, she said wist­fully as she glan­ced down the street I had just wal­ked, “I have to go in Mon­day for a Pacemaker.”

Turns out she has fibri­lla­tions and other heart issues, and even wal­king from her bedroom to her living room can exhaust her.  I told her how well my mother-in-law has done with her pace­ma­ker. She told me she’d be in the hos­pi­tal for at least 3 – 4 days for the sur­gery and observation.

And as we were chat­ting over the low white fence, I couldn’t help but notice the scar on her neck – the same scar my own mother had from the remo­val of her thy­roid years ago.  And the rest of Carlin’s story, and the rea­lity of her story, made me want to punch the nea­rest elec­tri­cal pole in disgust.

Carlin’s thy­roid was remo­ved over 40 years ago.  She remem­bers being on “2 grains of something” – clearly it was desic­ca­ted thy­roid. And she says she felt really good. But she wasn’t on it long, as her doc­tor remo­ved it and put her levothy­ro­xine over 30 years ago. You know, that “new and modern” T4-only CRAP which doc­tors fell for like the blind follo­wing the blind begin­ning in the 1960’s until today. (The story behind the intro­duc­tion of T4 onto patients in the early 1960’s is in Chap­ter One of the STTM book)

So I knew. Her heart trou­bles could be one of the many side effects of the infe­rior treat­ment of T4-only medi­ca­tions (which also inc­lude Synth­roid, Levoxyl, Eltro­xin, Oroxine…all of them). My own mother suf­fe­red the same fate while on Synth­roid her entire life. And patients chat about this all the time on thy­roid groups – heart issues while on T4.

I star­ted pro­bing. She has had issues with high blood pres­sure. Another typi­cal side effect of the crap T4-only medi­ca­tion, and which is remo­ved with desic­ca­ted thy­roid. She has had issues with depres­sion – another typi­cal side effect of the crap T4-only medi­ca­tion, and which is remo­ved with desic­ca­ted thy­roid. She tal­ked bit­terly about the slew of medi­ca­tions she’s had to be on for years to coun­ter all her pro­blems, and which had given her bad side effects.

And the next worse thing she told me? She had acid reflux so bad a few years ago that they did sur­gery on her sto­mach. She had sur­gery for a con­di­tion which is VERY com­mon with thy­roid patients who are on T4 meds – low sto­mach acid from a lower meta­bo­lism, which cau­ses acid reflux. i.e. a symp­tom of con­ti­nued hypothy­roi­dism which is CORRECTED when on desic­ca­ted thyroid.

It was hard to con­tain myself. Here was this vibrant, life-loving, inte­lli­gent woman who has been on T4-only for over 30 years and has endu­red health pro­blems, sur­ge­ries, side effects from all sorts of money-grubbing phar­ma­ceu­ti­cal pills, and now, has to go in Mon­day for a pace­ma­ker. And in all pro­ba­bi­lity, most of what she has gone though could have been pre­ven­ted if some doc­tor had been WISE enough to keep this woman on desic­ca­ted thyroid.

I am livid and sick to my stomach.

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

  • Are you che­wing up your Armour or Natu­reth­roid? It will make the treat­ment far bet­ter, as it will release the desic­ca­ted thy­roid from the excess cellu­lose.  If you are on com­poun­ded, you need to tell the phar­ma­cist to stop using cellu­lose as a filler. On Erfa? You can do it sublingually.
  • If you are rea­ding this right on STTM’s blog, and would like to be noti­fied of each blog post, just sign up to the left and under the links.
  • Have you done labs and found your­self with high RT3? Get off Sele­nium for the time being, as it can help con­vert T4 to the RT3 along with the other rea­sons you make too much.
  • Want to spread the word about far bet­ter treat­ment? T-shirts and bum­per stic­kers are 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.

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.

FDA’s Safe Use Initiative – think they will listen to our cries about T4-only meds?

EarplugsAs a thy­roid patient who was pro­foundly har­med by the use of Synth­roid and Levoxyl in the treat­ment of my hypothy­roi­dism, and as an acti­vist who sees this same harm­ful truth with poten­tially millions of other patients, I find this recent news interesting.

But you gotta won­der if they will be wea­ring noise reduc­tion head­sets and ear plugs…or not…when it comes to the scan­dal of synthe­tic T4-only medi­ca­tions.  Will they?

Just today, the U.S. Depart­ment of Health and Human Ser­vi­ces and the Food and Drug Admi­nis­tra­tion (FDA) announ­ced the Safe Use Ini­tia­tive, “a pro­gram aimed at redu­cing the like­lihood of pre­ven­ta­ble harm from medi­ca­tion use”.

Sta­te­ments I glea­ned from this ini­tia­tive include:

1. Today, tens of millions of peo­ple in the Uni­ted Sta­tes depend on presc­rip­tion and over‐the‐counter (OTC) medi­ca­tions to sus­tain their health — as many as 3 billion presc­rip­tions are writ­ten annually. Too many peo­ple, howe­ver, suf­fer unne­ces­sary inju­ries, even death, as a result of pre­ven­ta­ble medi­ca­tion errors or misuse.

2. Although FDA and many other sta­kehol­ders have been wor­king to improve how the health­care sys­tem mana­ges medi­ca­tion risks in the Uni­ted Sta­tes, it is widely recog­ni­zed that more needs to be done to pro­tect the public from pre­ven­ta­ble harm from medi­ca­tion use.

3. Medi­ca­tions offer great bene­fit, but they come with risks. Whe­ne­ver medi­ca­tions are not used opti­mally, risks of harm can inc­rease significantly.

4. FDA pro­po­ses to iden­tify, using a trans­pa­rent and colla­bo­ra­tive pro­cess, spe­ci­fic can­di­date cases (e.g., drugs, drug clas­ses, and/or the­ra­peu­tic situa­tions) that are asso­cia­ted with sig­ni­fi­cant amounts of pre­ven­ta­ble harm.

This ini­tia­tive is actually far broa­der than what I glea­ned above, and also invol­ves self-abuse, expo­sure of dan­ge­rous medi­ca­tions to chil­dren, dire side effects, and more. Five areas are also spe­ci­fi­cally tar­ge­ted:  Con­su­mer medi­ca­tion infor­ma­tion (CMI), Medi­ca­tion dosing devi­ces, Ace­ta­mi­nophen toxi­city, Alcohol-based sur­gi­cal preps, and Medi­ca­tions in vials. You can read more in the fact sheet.

But if the FDA is going to do their job with this ini­tia­tive, or do their job ove­rall, you have to won­der if they will lis­ten to and inc­lude the pro­blems asso­cia­ted with being trea­ted with a T4-only medi­ca­tion as expe­rien­ced by millions of patients world­wide. Con­ti­nuing symp­toms of hypothy­roi­dism while on this ina­de­quate treat­ment is wides­pread and dama­ging for many, cau­sing hands reaching deep in poc­kets to pay for nume­rous doc­tors appoint­ments, besi­des anti­de­pres­sants, anti-anxiety meds, blood pres­sure meds, sta­tins, cor­ti­sol meds for adre­nal fati­gue, and other medi­ca­tions which we would have never nee­ded, and would have been pre­ven­ta­ble, if we had been on natu­ral desic­ca­ted thy­roid like Natu­reth­roid or Westh­roid in the first place.

Many patients on thy­ro­xine, T4-only medi­ca­tions will also report actual hos­pi­tal visits due to the side effects of a poor treatment.

In other words, thy­ro­xine aka levothy­ro­xine aka T4 treat­ment has been an unsafe and harm­ful treat­ment, cau­sing millions to suf­fer unne­ces­sary inju­ries and side effects for over 50 years of its use­less and popu­lar use.  It fits the Safe Use Ini­tia­tive. Or at the very least, it calls for the FDA to lis­ten to patient expe­rience with this lousy choice to treat hypothy­roi­dism.

Lis­ten to us, FDA. Lis­ten and be wise.

P.S. See the blog post below about a gene­tic rea­son why so many do lousy on T4.


  • 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.

New group formed called the Coalition for Natural Desiccated Thyroid

holdinghands2Wish you could talk to others about rele­vant facts con­cer­ning the current shor­tage, the FDA’s actions with Time Caps Labs, DESI and the New Drug Appli­ca­tion, cli­ni­cal trials, and rela­ted con­cerns? Have impor­tant infor­ma­tion to share?

A new group has just been crea­ted to work along­side other groups, inc­lu­ding save natu­ral thy­roid. Smartly called the Coa­li­tion for Natu­ral Desic­ca­ted Thy­roid, it  repre­sents unity of con­cern and is crea­ted for patients, advo­ca­tes, medi­cal pro­fes­sio­nals, repre­sen­ta­ti­ves of phar­ma­ceu­ti­cals who manu­fac­ture desic­ca­ted thy­roid, or anyone with an inte­rest in the four aims of this group:

1) Sha­ring of fac­tual infor­ma­tion con­cer­ning natu­ral desic­ca­ted thy­roid
2) Dis­cus­sion of current issues rela­ted to desic­ca­ted thy­roid
3) Unity among all con­cer­ned
4) Coor­di­na­tion of grass­roots action where needed.

The dis­cus­sion, sup­port and action of this group does not limit itself to any one group, advo­cate, web­site or forum, and wel­co­mes any men­tion of infor­ma­tion from web­si­tes, advo­ca­tes, medi­cal pro­fes­sio­nals or etc. which/who post about or have the same con­cerns as the aims above.

Join the group here: http://health.groups.yahoo.com/group/CoalitionForDesiccatedThyroid


  • 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.

Yes, Jessica Terry, it’s weird to have to self-diagnose, but thyroid patients have had to do the same thing!

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.


  • 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!