uk tags

And right on the heels of my post below, I want to inform ever­yone of a REAL LIFE HORROR STORY that is hap­pe­ning to Sheila Tur­ner of the UK right now. Sheila is a thy­roid patient advo­cate who crea­ted the UK Thy­roid Patient Advo­cacy web­site here.

Sheila will tell anyone who asks that she was very ill while taking levothy­ro­xine (125 mcgs) only the­rapy, being wrac­ked with back pain so severe she was una­ble to get out of her armchair, bed or car after sitting/laying down for a while.  She also suf­fe­red from debi­li­ta­ting ‘brain fog’ and short term memory, along with the usual lin­ge­ring hypothy­roid symp­toms while on thyroxine.

Sheila sta­tes: I couldn’t tole­rate levothy­ro­xine alone because it was found I was not con­ver­ting this mainly inac­tive hor­mone to the active hor­mone T3.  As my musc­les and tis­sues were not get­ting the T3 requi­red, my musc­les in my back were going into spasm, cau­sing the severe pain.

She then saw a pri­vate hor­mone spe­cia­list who star­ted her on natu­ral thy­roid extract (Armour Thy­roid, USP) and she regai­ned her full health! It was so pro­found that she star­ted the TPA-UK in 2004 to cam­paign for a bet­ter diag­nos­tic and treat­ment pro­to­col within the Natio­nal Health Sys­tem (NHS). (UK has socia­li­zed medicine.)

Fast foward to 2009.  As I wrote about below in my Feb. 14^th blog post,  the UK Royal College of Phy­si­cians along with seve­ral sup­por­ting orga­ni­za­tions recently brought out their pathe­tic and narrrow-minded new gui­de­li­nes on the diag­no­sing and treat­ment of pri­mary hypothy­roi­dism.  And lo and behold, Sheila, along with about 15 other patients on Armour via the same medi­cal con­sul­tant,  have had their Armour removed.

Says Sheila:  He and every NHS endoc­ri­no­lo­gist has been sent a let­ter from the Pre­si­dent of the Royal College of Phy­si­cians, telling them they should use thy­ro­xine ONLY as a treat­ment for pri­mary hypothy­roi­dism and that they should not recom­mend or presc­ribe Armour Thy­roid and that only acc­re­di­ted endoc­ri­no­lo­gists should ever recom­mend T3 as this was rarely indicated.

Sheila has been for­ced to return to the synthe­tic treat­ment of levothy­ro­xine (100 mcgs) and to it has been added 20 mcg liothy­ro­nine (T3) split twice a day. But there’s no gua­ran­tee she will be able to stay on the T3. Addi­tio­nally, don’t be foo­led into thin­king that a combo of synthe­tic T4 and synthe­tic T3 is as good as Armour. Patients all around the world who have tried it, then switched to Armour, report far bet­ter results with the latter.

Says Sheila in a com­ple­tely shoc­ked state:  I can­not believe this is hap­pe­ning — I tried to ques­tion him as to the rea­son all the NHS endoc­ri­no­lo­gists didn’t demand the BTA pro­duce MEDICAL EVIDENCE to show that hypothy­roid suf­fe­rers ONLY ever nee­ded T4 — he said he knew they should have pro­du­ced evi­dence, but it seems because it has come from the RCP, his and every­body else’s’ hands were tied — they have to be seen to be doing what they are told. I got the dis­tinct impres­sion that if any­body roc­ked the boat, they would be next doc­tor arraig­ned before the GMC.

Making this real life horror story even more shoc­king, her medi­cal con­sul­tant explai­ned that the only way to find the truth as to whether Armour was a bet­ter medi­ca­tion or not was through cli­ni­cal trials using Armour ver­sus levothy­ro­xine.  (i.e. patient expe­rience all over the world revea­ling it works isn’t enough evi­dence. Give me a break). But when she pres­sed him into star­ting this, he said they would need the bac­king of their thy­roid asso­cia­tion — yes, the Bri­tish Thy­roid Asso­cia­tion (BTA), the very group that has said that a TSH of 10 is bor­der­line hypo. (See my Nov. 7^th post)

Sheila con­ti­nues: I told him they would never agree to this, and he agreed also. I told him that we did NOT NEED the Bri­tish Thy­roid Asso­cia­tion to get ethi­cal appro­val — and surely he could get a group of like-minded prac­ti­tio­ners around him and do this them­sel­ves — but it would cost a great deal of money — and, again, if you are a mem­ber of BTA (and I believe most endoc­ri­no­lo­gists are) then they daren’t do a thing without their approval.

At the moment, Sheila will tell you with sad­ness and shock that it all seems rather surreal at the moment. She is sca­red for every suf­fe­rer of this disease to be for­ced into taking only one thy­roid hor­mone — a synthe­tic sto­rage hor­mone. She is  sca­red for her­self, too.

Sheila expounds: I just sin­ce­rely hope that I can cope with the change-over to synthe­tics and that Armour has made my body strong enough to do this. I will make abso­lu­tely sure that my adre­nals can cope with this. I feel SO VERY sorry for all of those suf­fe­rers who are being left in the care of a head in the sand endo­prat , who will refuse to even give them the correct thy­roid hor­mone their body needs.  Once again — THE NHS IS KILLING US!

This is pro­foundly sic­ke­ning and shocking.

If you are so moved,  send this blog post (www.stopthethyroidmadness.com/blog) to anyone and ever­yone.  Send it to your news­pa­per, your radio,  talk shows, your friends, rela­ti­ves, anywhere.   This should NOT go unheard of by others. We need to tell the world about this tra­vesty.  Speak your mind about this by adding a comment.

Update: you can read Sheila’s and UK-TPA’s res­ponse here: http://www.stopthethyroidmadness.com/uk-tpas-response-to-the-rcp/

More from Sheila that gives UK patients hope: http://www.stopthethyroidmadness.com/relationship-between-the-RCP-and-MHRA/

Want to be noti­fied of my blog posts? Curious what’s on my mind? Use the Noti­fi­ca­tion method to be infor­med. Look on the bot­tom left of the links where you can sign up. )

The recent press release by the UK’s Royal College of Phy­si­cians about the new gui­de­li­nes on the diag­no­sis and mana­ge­ment of pri­mary hypothy­roi­dism hit the web with a resoun­ding, stiff-necked thud.

And I have writ­ten about it in the news media here:  http://www.opednews.com/articles/The-Royal-College-of-Physi-by-Janie-Bowthorpe-090210 – 698.html

p.s.  In the 1600’s, Gali­leo was the first most pro­li­fic voice to proc­laim that the earth revol­ved around the sun (Armour), in con­trast to the firmly held posi­tion that the sun revol­ved around the earth (Thy­ro­xine).  He was denoun­ced as being dan­ge­rous and here­ti­cal. But over time, the truth won out.

Are you from the UK? Tell us what you think.

A thy­roid patient from the UK, and a mem­ber of Thy­roid UK, remin­ded me of the ongoing tra­vesty in the UK con­cer­ning the TSH lab test. And I thought it was worth revi­si­ting due to its extreme absur­dity. Quo­ting from www.brf-thyroid under FAQ, then Hypothy­roi­dism, then Treatment:

The most sen­si­tive indi­ca­tor of deve­lo­ping hypothy­roi­dism is a rise in the TSH result. Gene­rally a TSH result of <5 is regar­ded as bioche­mi­cally ‘nor­mal’, a result of 5 – 10 is bor­der­line and a result of >10 (in a patient who is not acu­tely ill) is regar­ded as con­sis­tent with hypothy­roi­dism. The bioche­mi­cal results have to be con­si­de­red along side cli­ni­cal symp­toms, and together they deter­mine the point at which the phy­si­cian will intro­duce Thy­ro­xine therapy.

Yikes. 5 – 10 is only BORDERLINE hypo?? What pla­net to they live on?? I have come across MANY thy­roid patients on inter­net groups who have had a TSH below 3 with RAGING hypothy­roi­dism, and for YEARS being told they were nor­mal. Never, ever has the TSH been a “sen­si­tive” indi­ca­tor until it finally rises enough to reveal it.…but that can be YEARS in the making, and the patient is now living with adre­nal fati­gue to further com­pli­cate their ongoing hypothy­roid con­di­tion. The TSH lab test does NOT work.

Then from http://www.british-thyroid-association.org/Guidelines/, and down­loa­ding the 2006 final ver­sion of the UK gui­de­li­nes for the Use of Thy­roid Func­tion Tests , and rea­ding 3.2.2, comes this:

The deci­sion on treat­ment of patients with subc­li­ni­cal hypothy­roi­dism should be gui­ded by repea­ted TSH mea­su­re­ments. When TSH is ele­va­ted but <10 mU/L there is no con­sis­tent evi­dence of an asso­cia­tion with symp­toms, secon­dary bioche­mi­cal abnor­ma­li­ties (hyper­li­pi­dae­mia), car­diac dys­func­tion or car­diac events.

No con­sis­tent evi­dence of an asso­cia­tion with symp­toms?? Then what ARE those symp­toms that thy­roid patients have expe­rien­ced over and over and over, even with a TSH as low as the 2’s??? And repea­ted TSH mea­su­re­ments?? There is a huge body of thy­roid patients across the world who have had years of a NORMAL TSH yet raging hypothy­roid symptoms.

They also add:
There is evi­dence of impro­ve­ment in the lipid pro­file and symp­toms when patients with modestly rai­sed TSH (mean 11.7mU/L) were ren­de­red euthy­roid with thyroxine

Calling anyone “euthy­roid” (nor­mal thyroid-wise) on a T4 med, with an ave­rage TSH of 11, is so laugha­ble that it stands on its humo­rous own.

The Dark Ages per­sist in the diag­no­sis and treat­ment of hypothy­roi­dism. What a sha­me­ful, blind-sighted tra­vesty! Are you from the UK and dea­ling with the back­ward­ness? Talk to us by repl­ying to this blog (and be patient – com­ments don’t always show up quickly.).

I was infor­med today that a very popu­lar and well-liked doc­tor in Texas, who treats many hypothy­roid patients, was dis­ci­pli­ned recently.  And for what?  Under the column tit­led NONTHERAPEUTIC PRESCRIBING, it sta­tes:  The action was based on Dr. Lau­nius’ presc­ri­bing Adi­pex, Adde­ral and Armour Thy­roid to patients when such medi­ca­tions were not indi­ca­ted. www.tmb.state.tx.us/news/press/2008/101608a.php

Adi­pex and Adde­rol are both cen­tral ner­vous sys­tem sti­mu­lants, and I can’t com­ment one way or the other. But the men­tion of Armour thy­roid as “not indi­ca­ted” is poten­tially worri­some, espe­cially with simi­lar dis­ci­pli­nary actions brought upon well-liked and wise doc­tors like Peat­field and Skin­ner of the UK, Derry of Canada, and  Sprin­ger in the US – all who dared to make obvious symp­toms more impor­tant than ink spots on a piece of paper.

Take Kymm, a 45 year old woman.  She has mani­fes­ted hypothy­roid symp­toms for 15 years since the birth of her daugh­ter.  Yet during those entire 15 years, her TSH lab result has been com­ple­tely “normal”…i.e. hypothy­roi­dism has never been “indi­ca­ted” based on the typi­cal and wides­pread gold stan­dard of diag­no­sis: the TSH.  But she has never, ever been nor­mal with 15 years of easy weight gain, chro­nic depres­sion, thin­ning hair, rising cho­les­te­rol, and other clear hypothy­roid symp­toms. And she has in fact star­ted on Armour…and is soaring.

Kymm is not an oddity.  Thy­roid patients on inter­net groups report going years with a nor­mal TSH, no diag­no­sis, yet clear symp­toms which are igno­red by their TSH-obsessed doc­tors.   So their doc­tors may have avoi­ded dis­ci­pli­nary action, but did they truly prac­tise the art and science of healing??

I use those phra­ses often. I can’t help it. Because it’s exactly what doc­tors are when it comes to thy­roid treat­ment. It’s APPALLING.

Yes­ter­day, I had the first of two book sig­nings. It was announ­ced in the paper, and I wasn’t sure what the tur­nout would be. I shouldn’t have won­de­red. It was a great tur­nout. Peo­ple are GETTING IT that there is SOMETHING WRONG with their treat­ment. Around me stood seve­ral women, all still on T4 (Synth­roid, Levoxyl, et al), and ALL suf­fe­ring. All but one woman had weight pro­blems. Seve­ral had rising cho­les­te­rol. Some admit­ted to being on anti-depressants. Some obviously had adre­nal fati­gue. And ALL were being told by their doc­tors that their thy­roid treat­ment was now “nor­mal”. Where can I go beat my head against the wall?????? They were eager to get the book and the know­ledge it con­tai­ned to change their lives!

So far, the book has been sent to Nor­way, Ice­land, Bel­gium, UK, Aus­tria, Swe­den, Swi­tzer­land, Ire­land, Aus­tra­lia and Canada, besi­des all over the US. The STTM web­site star­ted the wheel to turn, and the book can only move it fas­ter. And add it to other thy­roid books which had begun to men­tion the truth (Broda Bar­nes being the first) as well as other groups and web­si­tes — we’ll even­tually knock some SENSE and SIGHT in doc­tors, don’t you think?

The Stop the Thy­roid Mad­ness book, the bible of correct thy­roid and adre­nal treat­ment, by patients for patients, can be orde­red here.

P.S. I live near one town which ser­ves a popu­la­tion of nearly 35,000 peo­ple, and near another of over 4000 peo­ple, and there are plenty of doc­tors around here. Yet, there is not ONE doc­tor in this area that “gets it”. I sym­pathize with YOU if you are in the same boat.