• +Audience
• uk

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.

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

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.

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.

(Side note: I feel so stu­pid. If you have sig­ned up to receive noti­fi­ca­tion of STTM’s blog posts (see sig­nup on left below links), I have inad­ver­tently fai­led to check a par­ti­cu­lar box for the emails to go out. I won’t make that mis­take again. See the two posts below, which you weren’t noti­fied about when they came out. )

I recently chat­ted with Sheila Tur­ner, a thy­roid patient advo­cate in the UK who runs the web­site Thy­roid Patient Advo­cacy – Uni­ted Kingdom.

And she has become abso­lu­tely dis­gus­ted at what is hap­pe­ning in the UK – dis­gus­ted enough to stop being polite and to ask direct and poin­ted ques­tions on the home page of her TPA-UK website.

What spu­rred her tough new stand?  Says Sheila, “The RCP (Royal College of Phy­si­cians), BTA (Bri­tish Thy­roid Asso­cia­tion) et al are doing everything they can to boy­cott all T3 con­tai­ning pro­ducts and their latest ‘Sta­te­ment’ on the diag­no­sis and mana­ge­ment of pri­mary hypothy­roi­dism is ban­ning gene­ral prac­ti­tio­ners from presc­ri­bing T3 at all.”.

And, explains Sheila, it’s got­ten to the point where most any Gene­ral Prac­ti­tio­ner is com­ple­tely afraid to presc­ribe T3 or any T3-containing pro­duct like natu­ral desic­ca­ted thy­roid for fear of being repor­ted. “The ONLY peo­ple allo­wed to recom­mend that T3 be presc­ri­bed are “acc­re­di­ted endoc­ri­no­lo­gists”, says Sheila. (And how many patients have expe­rien­ced how close min­ded Endo’s can be towards desic­ca­ted thyroid.)

And here are her bri­lliant, in-your-face ques­tions with links, which are per­ti­nent for ALL of us, whether in the UK or not:

1. WHY do the GMC, the RCP, the BTA et al. deli­be­ra­tely choose to ignore the scien­ti­fic evi­dence that has been avai­la­ble for over 40 years ?
2. WHY are medi­cal asso­cia­tions igno­ring the 13% fai­lure rate of T4-only the­rapy for the past 50 years? Why are patient’s com­plaints dis­mis­sed?
3. WHY has there been no correc­tion to the RCP sta­te­ment when there are patients who are coun­te­re­xam­ples to the vali­dity of T4-only therapy?
4. WHY is the con­fu­sion of two defi­ni­tions for ‘hypothy­roi­dism allo­wed to continue?
5. WHY are gui­de­line authorship and con­cise gui­dance to good prac­tice pro­to­cols ignored?
6. WHY are indi­vi­dual symp­toms of hypothy­roi­dism sta­ted to be “non-specific” when Bai­sier found groups of these symp­toms may be quite spe­ci­fic?
7. WHAT further inves­ti­ga­tions for non-thyroidal cau­ses are recom­men­ded as rele­vant to the symp­toms of hypothy­roi­dism when pitui­tary and thy­roid GLAND func­tion tests are bioche­mi­cally nor­mal –  Levels of fT3, rT3 and adre­nal levels?
8. WHY are the stu­dies by Das (2007) and Lewis (2008), which found that patients could be suc­cess­fully trea­ted with thy­roid extract being ignored?
9. WHY is medi­cine igno­ring false nega­tive test results?
10. WHY do doc­tors refuse to explain and/or jus­tify their deci­sions, the­reby withhol­ding infor­ma­tion neces­sary for valid con­sent to treatment?
11. WHY does the NHS refuse to take steps to pro­tect human rights when suf­fe­rers are put at risk through a dis­re­gard of the demand that patients should be trea­ted with fair­ness, res­pect, equa­lity, dig­nity and autonomy?
12. WHY are labo­ra­tory disc­re­pan­cies in serum tes­ting being ignored?

I appre­ciate the tough stand Sheila is taking. We HAVE to take a strong stand in light of the world­wide igno­rance about 60 years of patient suf­fe­ring on T4 meds like Synth­roid, Eltro­xin et al, about bet­ter treat­ment with natu­ral desic­ca­ted thy­roid and T3 pro­ducts, and about the lousy TSH lab test!

In fact, in light of prac­ti­cally NO mass media atten­tion to this huge world­wide thy­roid treat­ment scan­dal, we have to shout it whe­re­ver we can and hope that some WISE repor­ter or media per­so­na­lity gets this and will shine a media light at the idiocy going on out there towards thy­roid patients. Stop the Thy­roid Mad­ness!™

I’ve been peru­sing com­ments in res­ponse to the UK’s Royal College of Phy­si­cians blun­de­ring and dark-age-constructed Diag­no­sis and treat­ment of pri­mary hypothy­roi­dism.  And though all com­ments are quite good and worth your read, I was struck by the com­ment tit­led May Rea­lity Intrude? by a man named Char­les.

Char­les explains that in 1999, his 67-year-old wife had RAI (radioac­tive iodine) and was then put on levothy­ro­xine, a T4-only medi­ca­tion (aka Synth­roid, Levoxyl, Eltro­xin, Oro­xine, levothy­ro­xine, et al).  And not long after, she com­plai­ned of having depression.

He had an idea why after rea­ding the New England Jour­nal of Medi­cine about T3, and pro­cee­ded to buy her Armour off the inter­net.  Without her kno­wing, he switched medi­ca­tions. Lo and behold, he sta­tes “she promptly retur­ned to her usual sunny dis­po­si­tion”. Her phy­si­cian knew nothing of the switch either, and found nothing to be con­cer­ned about in her.

Char­les then explai­ned how, at age 74 in 2007, she was near death thanks to an ulcer bleed.  And to con­ti­nue trea­ting her hypothy­roi­dism, the hos­pi­tal gave her levothy­ro­xine all over again.  Back came her depres­sion and a fee­ling of wan­ting to go home and die.

So Char­les brought her Armour to the hos­pi­tal, and though her phy­si­cal state was depres­sing enough, her sunny dis­po­si­tion retur­ned.  And that happy spi­rit while still on Armour con­ti­nues today after a full reco­very.

And Char­les pon­de­red. If his wife had been in a NHS (Natio­nal Health Ser­vice) hos­pi­tal under the care of a so-called thy­roid spe­cia­list of the NHS, would she have fai­led to obtain T3 and ins­tead, sent to a psychia­trist as if her depres­sion had nothing to do with her levothy­ro­xine trea­ted hypothy­roi­dism – the very treat­ment that the Royal College of Phy­si­cians has a dog­ma­tic love affair with?

He then conc­lu­des: My wife’s depres­sion was obvious. Since she is equip­ped with much the same assort­ment of body parts and asso­cia­ted phy­sio­logy as others, is it not likely that many levothyroxine-treated patients suf­fer from less-noticeable depression?

Well Char­les, most any thy­roid patient who deci­des to res­pond to this will tell you une­qui­va­cably YES, YES, YES.  Because there’s no research, study or direc­tive that is more pro­found and telling than the actual EXPERIENCE of patients all over the world with T4 treat­ment and depression…besides a slew of other side effects of con­ti­nuing hypothy­roi­dism on T4-only meds.

Did you have depres­sion on a T4 med? Tell us about your expe­rience in the Com­ments sec­tion of this post.

*Want to be infor­med of these blogs? Curious what’s on Janie’s mind? Use the Noti­fi­ca­tions on the lower left of the links.

*Scroll down to the June 2^nd post and report your expe­rience on the newly for­mu­la­ted Armour. It’s not a happy pic­ture.