uk tags

I have lived in the Uni­ted Sta­tes my entire life.

And there are other coun­tries I have felt were simi­lar to my own as far as being modern, forward-thinking, and inte­lli­gent. The Uni­ted King­dom is one.

But there is one area in the UK that is as close to the Dark Ages as it gets: the treat­ment of all forms and degrees of hypothyroidism.

Because of the Bri­tish Thy­roid Asso­cia­tion (BTA) and the Royal College of Phy­si­cians (RCP) ‘gui­dance’ on the Diag­no­sis and Mana­ge­ment of Pri­mary Hypothy­roi­dism, most UK doc­tors refuse to presc­ribe any form of  T3, whether adding synthe­tic T3 to one’s T4, or using natu­ral desic­ca­ted thy­roid, either because they have fallen in line like ducks in a row, or they fear for their job.

Why? Because “overwhel­ming evi­dence sup­ports the use of Thy­ro­xine (T4) alone in the treat­ment of hypothy­roi­dism, and we do not recom­mend the presc­ri­bing of addi­tio­nal Triio­dothy­ro­nine (T3) in any pre­sently avai­la­ble for­mu­la­tion, inc­lu­ding natu­ral thy­roid extract, as it is incon­sis­tent with nor­mal phy­sio­logy, has not been scien­ti­fi­cally pro­ven to be of any bene­fit to patients, and may be harmful”.

Any­body puking yet??

And, says thy­roid patient advo­cate Sheila Tur­ner of TPA-UK, “never has the RCP, BTA  pro­du­ced any of the ‘overwhel­ming evi­dence’ they claim as sup­por­ting the use of T4-only, even though they have been asked to do so on nume­rous occa­sions. Overwhel­ming evi­dence sup­ports the use of synthe­tic T4/T3 and natu­ral thy­roid extract.”

And don’t think it won’t hap­pen where YOU live. Stu­pi­dity can abound.

What to do about it?? Ans­wer a short ques­tion­naire, crea­ted by Sheila and TPA-UK, which is for those with symp­toms of hypothy­roi­dism when trea­ted with T4-only, who then tried a T3 thy­roid hor­mone pro­duct with suc­cess. “The results of this ques­tion­naire will ena­ble us to create the first ‘World-wide Regis­ter of Coun­te­re­xam­ples to Levothy­ro­xine (T4) — only the­rapy’”, unders­co­res Sheila. “The objec­tive is to draw atten­tion to the dire need for an urgent re-examination of the exis­ting pro­to­col for the diag­no­sis and mana­ge­ment of the symp­toms of hypothyroidism.”

Don’t wait until stu­pi­dity and narrow-mindedness comes to where you live, as it also has in the country of Colum­bia, where Cyno­mel (T3) was reti­red more than 10 years now.  Give this a voice NOW to head it off at the pass.

P.S. While you are at it, sign up with Dr. Skinner’s World Thy­roid Regis­ter.

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The STTM patient-to-patient web­site needs your help! I had to move the web­site to a far lar­ger ser­ver in order to handle the immense amount of visits this site gets. And a lar­ger ser­ver means higher yearly costs to host it. I can’t do it alone, as my money tree was killed by pine beet­les and my hus­band won’t tell me what his Swiss Bank Account num­ber is. So your dona­tions can help keep Stop the Thy­roid Mad­ness up and run­ning for your­self and other patients just like you! If you appre­ciate STTM, please go here to make a dona­tion to the hos­ting fees. I do not get it! The hos­ting com­pany does.

The large size STTM t-shirts are now gone. If you can wear an X-large or XX-large and want to spread the word to others, go here. And the bum­per stic­kers REALLY catch atten­tion!! I am stop­ped in par­king lots because of mine. YOU could change someone’s life!

The Con­tact Me page on STTM hasn’t been wor­king for weeks. And I didn’t know it.  But it’s fixed now.  Remem­ber: it’s not to ask ques­tions about your per­so­nal treat­ment. Those need to go here.

The STTM book helps in your doctor’s office. Have brain fog? Many patients are telling me they take the book right in the office, book­mar­ked. I can’t pro­mise how your doc­tor will res­pond, but it’s been posi­tive for most when a book is refe­rred to right in front of the doc. I hope it helps you, too.  P.S. Only books orde­red directly from the publishing com­pany get a book­mark of upda­ted info. That’s also true if you have a book sent to a rela­tive or friend.

(4 – 30: Paula has infor­med me that you can down­load Dr. Myhill’s com­plete web­site to your com­pu­ter via this zip file: www.drmyhill.co.uk.zip — Win­dows Live )

Today, it has been announ­ced by the GMC (Gene­ral Medi­cal Coun­cil) of the UK that Dr. Sarah Myhill is now strait­jac­ke­ted. She is for­bid­den to presc­ribe medi­ca­tions, is bound by other medi­cal prac­tice res­tric­tions (see the details on the Sup­port Dr. Myhill Face­book page), and most egre­giously, has been orde­red to remove parts of her web­site (thanks to Lethal Lee for poin­ting this out), some of which you will not see two weeks after I have pos­ted this.

Why remove parts of her web­site? Because by daring to edu­cate the public, espe­cially if that edu­ca­tion goes against “stan­dard medi­cal prac­tice”, it seems to be dee­med “harm­ful”. In other words, you as a patient are not allo­wed to dis­co­ver, or are too “vul­ne­ra­ble to get it,  that there just might be a TOTALLY dif­fe­rent story to the medi­cal prac­tice you are sub­jec­ted to.

For exam­ple, here is part of a page on Dr. Myhill’s web­site which is com­ple­tely correct, infor­ma­tive, and wise, and I want to see her words stay sharp and vie­wa­ble, espe­cially for thy­roid patients. It fits our expe­rience. The page is tit­led “Test results and what they mean”. If you want to be infor­med, read all the below.

http://www.drmyhill.co.uk/wiki/Category:Test_results_and_what_they_mean

Only too often peo­ple come to me with tests results which have not been pro­perly inter­pre­ted. The rea­sons why this hap­pens are as follows:

• Test results are flag­ged up and con­si­de­red to be abnor­mal if they are outside the refe­rence range, but one’s indi­vi­dual nor­mal range is not the same as the popu­la­tion refe­rence range. This is a par­ti­cu­lar pro­blem in the inter­pre­ta­tion of thy­roid tests.
• Refe­rence ran­ges for tests change. Refe­rence ran­ges are based on ran­dom bloods from the popu­la­tion. The trou­ble is anyone follo­wing a Wes­tern lifestyle is not evo­lu­tio­na­rily correct and many not nor­mal! So labs change their refe­rence ran­ges to adjust for this. So, for exam­ple, the nor­mal range of a gamma GT used to be up to 36, it is now up to 70. This enzyme is indu­ced by alcohol and presc­rip­tion drugs and because so many peo­ple drink alcohol it is con­si­de­red nor­mal to run a high gamma GT! The lab I use has a nor­mal refe­rence range for thy­roid hor­mone T4 of 12-22pmol/l but some labs give ran­ges of 5.6-17pmol/l!
• Tests are often incom­plete. So someone with a thy­roid sti­mu­la­ting hor­mone (TSH) within refe­rence range will be told they have no thy­roid pro­blem, when in fact one also needs a free T4 and a free T3 together with a cli­ni­cal his­tory to assess if there is a thy­roid problem.
• Drug com­pa­nies influence nor­mal ran­ges. The nor­mal range for cho­les­te­rol has come down stea­dily since sta­tins have been such big money ear­ners for Big Pharma.
• Inco­rrect break­down of test results. Many peo­ple are presc­ri­bed sta­tins on the basis of a sin­gle cho­les­te­rol level. This is faulty for many reas ons — firstly one needs a break­down of good (HDL) and bad (LDL) cho­les­te­rol to get the ratio. If the ratio is not favou­ra­ble then this is likely to be a symp­tom of arte­rial disease. Cho­les­te­rol lowe­ring drugs are often irre­le­vant. See Cho­les­te­rol —  the com­mon cau­ses of rai­sed levels
• Results close to the limits of nor­mal may be abnor­mal for that per­son. For exam­ple, a high nor­mal bili­ru­bin may mean Gilbert’s syn­drome — this means someone is a poor deto­xi­fier. A high mean cor­pus­cu­lar volume (MCV) could point to hypothy­roi­dism, B12 or folic acid deficiency.
• Nor­mal tests do not mean no patho­logy. A nor­mal ECG at rest does not mean there is no heart disease, yet many peo­ple are told this is the case.
• Tests may ask the wrong ques­tion. So many peo­ple come to me with severe fati­gue syn­dro­mes having been told nothing is wrong because all the tests are nor­mal! But ask the right ques­tion and do Mitochon­drial Func­tion Pro­file and you find gross abnor­ma­li­ties with res­pect to energy supply at the cellu­lar level.
• Tests for poi­so­nings are par­ti­cu­larly mis­lea­ding. For years doc­tors have pro­mo­ted levels of cho­li­nes­te­rase as a good test for orga­nophosphate poi­so­ning. It is a rot­ten test and mis­ses the majo­rity of cases! Much bet­ter would be Fat biopsy for pes­ti­ci­des or Vola­tile Orga­nic Compounds

GOOD FOR YOU, Dr. Sarah Myhill!

I and many other thy­roid patients, strug­gling to fight the inane thy­roid treat­ment pro­to­cols, have a strong fee­ling that though this pro­gres­sive doc­tor may be res­tric­ted as a phy­si­cian, we’re going to hear a lot more good infor­ma­tion from the cou­ra­geous and wise Sarah Myhill.

(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/

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.

Last May, a very inte­res­ting article appea­red in the May 2009 issue of the Jour­nal of Cli­ni­cal Endoc­ri­no­logy and Meta­bo­lism, tit­led For Some, L-Thyroxine Repla­ce­ment Might Not Be Enough: A Gene­tic Ratio­nale and pre­sen­ted by Endoc­ri­no­lo­gists in Bris­tol in the UK. It’s accom­pa­nied with an edi­to­rial by Endoc­ri­no­lo­gists Brian W. Kim and Anto­nio C. Bianco.

This is the same article refe­rred to by Endoc­ri­no­lo­gist Dr. Gary Pep­per on the last Thy­roid Patient Com­mu­nity Call on Talkshoe.

Basi­cally, the article sta­tes that a gene­tic varia­tion in the enzyme that con­verts T4 to T3, deio­di­nase D2 (also called Type 2 Deio­di­nase, or 5′-Deiodinase), may be res­pon­si­ble for why so many thy­roid patients don’t do well on Synth­roid, Levoxyl, levothy­ro­xine, etc, and in turn, do so much bet­ter on natu­ral desic­ca­ted thy­roid like Natu­reth­roid, Erfa’s Thy­roid, or the com­bi­ned synthe­tic T4 and synthe­tic T3 (Cytomel).

In other words, where some may have a strongly func­tio­ning deio­di­nase D2 enzyme which con­verts T4 to the active T3 well, others may have a modi­fied deio­di­nase D2 enzyme, cau­sing less opti­mal conversion.

In the Edi­to­rial, the two Endos Kim and Bianco explain the rea­lity of “polymorphism” – a con­di­tion in nature in which chan­ges or varia­tions occur, and in one patient from another, a change in the DNA.  As rela­ted to con­ver­sion of T4 to T3,  some thy­roid patients have a less effec­tive deio­di­nase D2 enzyme in the con­ver­sion of T4 to T3.  Spe­ci­fi­cally, there is a com­mon variant of the gene, threo­nine (Thr) 92 ala­nine (Ala), and it results in dec­rea­sed D2 enzy­ma­tic activity.

The study pro­po­ses that this alte­ra­tion from poly­morphism occurs in 16% of those stu­died, and conc­lu­des that the majo­rity don’t have this pro­blem, and thus, “most do fine on T4-only medi­ca­tions”. But 16% do have this pro­blem and need the com­bi­ned the­rapy of T4 with T3.

Bris­tol was also men­tio­ning this rea­lity in 2004 here, even if they thought it was as low as 5%.

As Dr. Pep­per hin­ted, this study could do won­ders to open the eyes of Endoc­ri­no­lo­gists about the use of desic­ca­ted thy­roid, or at the very least, about com­bi­ned hypothy­roid treat­ment with synthe­tic T3 added to synthe­tic T4.  And I’m glad for that when so many patients have found Endoc­ri­no­lo­gists to be narrow-mindedly stuck on Synth­roid or other T4-only thy­ro­xine products.

Of course, infor­med thy­roid patients know this is only a baby step in the right direc­tion, even if a good one! So we’ll rejoice for this study, and watch for more pro­gress from the medi­cal com­mu­nity and Endoc­ri­no­logy in gene­ral. For exam­ple, saying that “most do fine on T4” simply because they have may a non-variation might be pro­ven wrong as phy­si­cians take the time to really look at those “fine” patients, espe­cially as they age and symp­toms of an infe­rior treat­ment do pop up. And though the com­bi­na­tion of synthe­tic T3 with synthe­tic T4 defi­ni­tely gives bet­ter results, thy­roid patients who then moved to desic­ca­ted thy­roid with it’s T4, T3, T2, T1 and cal­ci­to­nin report even bet­ter results and cli­ni­cal pre­sen­ta­tion!  We’ve also lear­ned that the TSH lab test abso­lu­tely sucks when it comes to diag­no­sis and treat­ment.  Read TSH Why It’s Use­less, or see even more detail in Chap­ter Four of the STTM book, tit­led Thy­roid Sti­mu­la­ting Hooey.

And finally: do thy­roid patients really believe that pro­blems with T4-only treat­ment is simply due to a gene­tic abnor­ma­lity or varia­tion? Maybe. But isn’t it funny that a healthy human thy­roid does NOT depend solely on con­ver­sion, but also gives direct T3. hmmmmmm

P.S.  Patients also know that the use of the sup­ple­ment Sele­nium helps with con­ver­sion, by the way, but has never stop­ped our first-hand know­ledge that desic­ca­ted thy­roid rocks!