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I think back about my mother.

At age twenty-one in 1939, she had most of her thy­roid remo­ved due to Gra­ves disease and hyperthy­roi­dism. Because a small part remai­ned, hyper set in once again by 1960 com­plete with bug­ged eyes. So Radioac­tive Iodine I-131 was the next step to once-and-for-all annihi­late the thy­roid.  Not long after, as her thy­roid hor­mone levels fell, she was one of the early vic­tims of the “new and modern” T4-only medi­ca­tion called Synthroid.

And all hell broke loose. Depres­sion enve­lo­ped her every­day life — one of her worst lin­ge­ring symp­toms of hypothy­roi­dism due to the shoddy treat­ment of a T4-only med as well as the TSH lab test.  I remem­ber her moods, her fre­quent anger and lack of patience, and her cons­tant coun­se­ling appointments.

By 1963, and right before Pre­si­dent Ken­nedy was shot, she sub­mit­ted her­self to Elec­tric Shock Treat­ment in a futile effort to con­trol her depres­sion.  What a crock.  She was never again the bright and quick-witted woman I remem­be­red as a youn­ger child. Her brain was fried and she had a new dull flat reac­tion to life. And for the rest of her life, she lived on her antidepressant/anti-anxiety med Ela­vil and had daily cons­tant naps, weight gain, rising cho­les­te­rol, dry hair, heart sur­gery, stiff joints, brain fog and ina­bi­lity to stand on her feet long – her own mani­fes­ta­tion of lin­ge­ring symp­toms while on the lousy thyroxine.

And she did the T4-horror show…all…by…herself. No inter­net,  no patient groups and forums, no Stop the Thy­roid Mad­ness web­site, blog or book,  no good doc, no thy­roid Face­book or Twit­ter groups, no other good thy­roid books or web­si­tes. Nada. I came along as a Thy­roid Patient Acti­vist too late for my mother, who died in 2003.

It makes me shud­der thin­king of that lonely hell. But then again, it’s not just in the far past: it hap­pe­ned to her only daugh­ter, me, for nearly 20 years. Com­plete lonely hell of my own with intense and disa­bling Dysau­to­no­mia indu­ced by my con­ti­nued hypo state while on Synth­roid and later Levoxyl.

And today, because the mass media or any media per­so­na­lity refu­ses to speak the truth of the 55 year scan­dal of T4-only meds like Synth­roid, Levoxyl, levothy­ro­xine, Eltro­xin, Oro­xine, or the cuckoo’s nest of the TSH lab test and range, HUNDREDS OF MILLIONS of indi­vi­duals still suf­fer. How stu­pid can they get.  This is a scan­dal that has effec­ted a huge mass of indi­vi­duals glo­bally, past and pre­sent,  inc­lu­ding those today who STILL lin­ger with undiag­no­sed hypothy­roi­dism thanks to the worth­less TSH lab test or lin­ge­ring hypo on the lousy T4-only medi­ca­tions. And all the above when we, as patients, have lear­ned a far bet­ter way to treat our thy­roid problems

Did you have rela­ti­ves like my own Mom (who died in 2003) who lived the T4-only scan­dal alone?  Use the Com­ment form to tell us about them.  Have YOU suf­fe­red from a T4 med? Report it to the FDA here.

Also below, read about Jane Pau­ley and the health issues that make you won­der, since they can all be con­nec­ted to a thy­roid pro­blem, either undiag­no­sed or untrea­ted.  Below that, you’ll see posts about Oprah, Reverse T3, the pro­blem of cellu­lose in our meds, the desic­ca­ted thy­roid shor­ta­ges, and more.

*HO HO HO! Have a STTM book sent to someone  you care about as a CHRISTMAS or HOLIDAY pre­sent. A card will be inc­lu­ded, and the book will be in an enve­lope with a red bow!! Save money the more you buy!

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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