• +Audience
• Patients
• Thyroid treatment
• self treatment
• t3
• t4

(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…

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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/

Yes, we’ve all heard about T4 (the thy­roid sto­rage hor­mone) and T3 (the active thy­roid hor­mone which rids us of hypothy­roid symp­toms). We’ve lear­ned that the body not only con­verts T4 to T3, it also pro­vi­des some of  T3 directly. The lat­ter fact is why patients have found natu­ral desic­ca­ted thy­roid like Natu­reth­roid, Erfa’s Thy­roid, etc. to be a far bet­ter treat­ment for hypothy­roi­dism, besi­des the T2, T1 and cal­ci­to­nin you’ll also find in desic­ca­ted thy­roid – just like your own thy­roid would be making.

But in every indi­vi­dual, a thy­roid also con­verts T4 to the inac­tive RT3 (reverse T3) as a way to clear out excess T4 that the body doesn’t need.  It’s natu­ral and neces­sary. It will espe­cially hap­pen if you go through sur­gery or a diet.

Unfor­tu­na­tely, many thy­roid patients make far too much RT3, and patients have been making cut­ting edge dis­co­ve­ries about this fact and how to treat it with their doc­tors.  High levels of RT3 can be found if you have high cor­ti­sol, low cor­ti­sol, low ferri­tin, low B12 and other undis­co­ve­red and untrea­ted underl­ying issues that can go hand-in-hand with being hypothyroid.

Why is a high level of RT3 is pro­blem? That excess RT3 is making itself lazily com­for­ta­ble on your cell recep­tors, pre­ven­ting T3 from gai­ning access to your body.  It beco­mes like a clog­ged up drain to your body. So you stay hypo and symp­to­ma­tic, in spite of see­mingly nor­mal labwork.

This coming THURSDAY, NOVEMBER 19^th (tomo­rrow as I write this) on the TALKSHOE THYROID PATIENT COMMUNITY CALL, we’re going to talk about the Reverse T3 pro­blem with thy­roid patient advo­cate Vale­rie Tay­lor. She not only owns the NTH Adre­nals group (and is con­si­de­red the most know­led­gea­ble patient on adre­nal fati­gue in the world), she also crea­ted the RT3/T3  group on Yahoo, which you will find on the Talk To Others page.

We’ll talk about excess RT3, symp­toms that can go along with it, how to do lab­work to deter­mine if you have this pro­blem, how to treat it with T3-only, and more. There’s a Chat Box you can par­ti­ci­pate in while the show is going on. Audio will come directly out of your com­pu­ter, and you can call in and ask Vale­rie or Janie a ques­tion. Times are 6 pm Paci­fic, 7 pm Moun­tain, 8 pm Cen­tral and 9 pm Eastern.

Want to read more? Thy­roid patient Nick Foot, who also mode­ra­tes the RT3/T3 group, has crea­ted an exce­llent Ques­tion and Ans­wer RT3 web­site. This will make you even more infor­med before this Talkshoe event. Note that the web­site is still work-in-progress, so expect to see more as he works on it.

For those with the Stop the Thy­roid Mad­ness book, there is also more good detail in Chap­ter 12 called T3 is the Star of the Show, page 155. This is all good infor­ma­tion to take into your doctor’s office.

Update: cellu­lose in our desic­ca­ted thy­roid meds may be much more of a pro­blem than we ever ima­gi­ned. See my blog post below.

*HO HO HO! Have a STTM book sent to someone  you care about as a CHRISTMAS or HOLIDAY pre­sent. All the work is done for you!

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.