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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.). 

It would make an inc­re­di­ble horror movie. The plot: stun­ningly con­vince at least hun­dreds of millions of indi­vi­duals world­wide that what has always been obvious, isn’t. That lea­ves only look green because of alien fil­ters in your eyes. That ripe apples fall because water pulls them down. That fire doesn’t really burn your skin; it’s just your imagination. 

And about hun­dred more schi­zoph­re­nic ying yangs. Because if those in autho­rity say so, it must be so. 

But the horror movie is a rea­lity, and I see it EVERY TIME I come into con­tact with peo­ple and the sub­ject of my thy­roid advo­cacy comes up. 

Like today. A cou­ple saw my book and struck up a con­ver­sa­tion. She was on Synth­roid; he was on Levoxyl. They had each been on their T4-only treat­ment for 12 and 14 years res­pec­ti­vely, felt their hypo was per­fectly trea­ted, belie­ved their doctors…and were now dea­ling with other pro­blems: his rising cho­les­te­rol, her depres­sion, his fati­gue, and her weight gain. BUT OF COURSE, THOSE HAVE NOTHING TO DO WITH THEIR T4-ONLY TREATED HYPOTHYROID AND SOME OF IT IS THEIR OWN FAULT…leaves aren’t really green, water makes ripe apples fall, and fire doesn’t really burn. 

It just struck me. And it’s struck me before. There’s just a LOT of SILENT SUCKERS wal­king around. I was one; my mother was one; and there are obviously millions out there, still wal­king around trying to live with the side effects of a treat­ment that their doc­tors say are NOT cau­sed by their thyroid. 

Sad.

(Has your cho­les­te­rol and other lipids impro­ved since you switched to Armour and rai­sed without using the TSH? Your story of suc­cess is wel­come on the blog post below!)

Some­ti­mes I pon­der: the current move­ment away from Synth­roid & Levoxyl and all other T4-only meds to desic­ca­ted thy­roid like Armour (as well as the unders­tan­ding of the high pre­va­lence of adre­nal fati­gue with thy­roid patients), has been going on for ALL of the 21^st cen­tury. In other words, patients were star­ting to talk about desic­ca­ted thy­roid like Armour by the year 1999, and Yahoo’s Natu­ral Thy­roid Hor­mo­nes group was star­ted in 2002. Other patient groups sprung up around the same time. The lat­ter group is also where the know­ledge about adre­nal fati­gue in thy­roid patients grew, which was further added to on STTM. So.…has there there been any chan­ges in the way thy­roid patients are trea­ted for their hypothy­roid and rela­ted conditions?

The YES

Some­ti­mes I can say a resoun­ding yes! There are many doc­tors around the world who are loo­king at Stop the Thy­roid Mad­ness (STTM) and lis­te­ning to what is says. STTM is about the real life chan­ging expe­rience of patients! Some doc­tors tell me outright, either via the Con­tact Me form or by res­pon­ding to my blog posts here, that they are rea­ding it and appro­ving the infor­ma­tion. Or, I find out about other doc­tors second hand by patients who tell me their doc­tor TOLD THE PATIENT to read STTM. The lat­ter defi­ni­tely makes me chuc­kle when so many doc­tors tell patients that infor­ma­tion on the inter­net is DANGEROUS!

I can also say yes when I read the com­ments of patients on various thy­roid patient groups on the inter­net. Because of the infor­ma­tion patients have lear­ned from STTM, which is in turn pas­sed into the groups, patients all over the world are making demands in their doctor’s offi­ces, and some pro­gress is being made all over the world.

And a final yes can be utte­red by me when I see a few but gro­wing num­ber of web­si­tes pro­mote desic­ca­ted thyroid. 

The NO

But there are so many situa­tions where I have to say no. 1) When doc­tors on inter­net forums TO THIS DAY con­ti­nue to give lousy advice to thy­roid patients, it’s dishear­te­ning. 2) When patients on thy­roid patient groups TO THIS DAY con­ti­nue to have doc­tors state each and every ridi­cu­lous give me a break com­ment, it’s sad. 3) When a famous female talk show host con­ti­nues to ignore each and every email sent to her for years about the deplo­ra­ble situa­tion across the world with thy­roid patients, as well as seem to misun­ders­tand her OWN thy­roid and poten­tial adre­nal pro­blem, it’s mad­de­ning. 4) And when I can run into patients DAILY when I go to the gro­cery store, or to the gas sta­tion, or to any public place, who are still on Synth­roid or Levoxyl and coping with innu­me­ra­ble symp­toms of a poor treat­ment, not exc­lu­ding adre­nal fati­gue, it’s scandalous.

So the com­plete ans­wer? Yes and no. The ball has defi­ni­tely been rolling for bet­ter treat­ment. Some doc­tors out there are truly lis­te­ning. Many patients out there are lear­ning and deman­ding change. It’s hap­pe­ning. But baby, we have a LONG WAY TO GO. And the power will be in the hand of patients who ques­tion their treat­ment, find ans­wers via STTM and other web­si­tes and patient forums, and con­ti­nue to demand change from their doc­tors and the entire medi­cal esta­blish­ment. I just hope to see more change soo­ner than later, don’t you?!

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