tsh tags

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 am amazed.

The Society for Endoc­ri­no­logy in the UK recently repor­ted that taking higher doses of thy­ro­xine (which will lower the TSH lab result) may be safer than has been pur­por­ted for decades.

And how low a TSH lab result did they find to be safe? As low as 0.04 – 0.4, the research found, is still safe enough to not cause an inc­rea­sed risk of  “heart disease, abnor­mal heart­beat pat­terns and bone frac­tu­res”, aka HYPERthy­roid symp­toms.

And those of us world­wide who know about the supe­rio­rity of natu­ral desic­ca­ted thy­roid can also use these research results in our fight to be on enough desic­ca­ted thy­roid with TSH-obsessed doc­tors, who view research as the end-all to the truth rather than solid cli­ni­cal pre­sen­ta­tion, sadly. Because when we are on enough desic­ca­ted thy­roid to feel fabu­lous again with all symp­toms remo­ved (in the pre­sence of good cor­ti­sol levels, ade­quate ferri­tin, B12 and diges­tive issues), our TSH lab result is always low, aka sup­pres­sed, and without one iota of hyper symptoms.

Patients have expe­rien­tially known this truth about the lousy TSH lab test, without research, for years!

But here’s what’s mis­sing from their research:

1. Those “safe, low levels of an “ink spot on a piece of paper” do not mean the 16,426 patients they follo­wed will be without nume­rous issues rela­ted to being on a sto­rage hor­mone.  i.e. the body is not meant to live for con­ver­sion alone! A healthy thy­roid will con­vert T4 to the active T3, but it will also pro­vide direct T3 in addi­tion to the T2, T1 and calcitonin…none of which a T4-only med pro­vi­des directly.
2. Addi­tio­nally, the TSH lab test only reveals the action of a pitui­tary mes­sen­ger hor­mone called the Thy­roid Sti­mu­la­ting Hor­mone (TSH).  The lab test does NOT mea­sure whether your tis­sue is recei­ving enough thy­roid hor­mone, which is why so many patients on T4 end up with depres­sion, rising cho­les­te­rol, high blood pres­sure, low B12, low ferri­tin and many symp­toms, as well as adre­nal fati­gue thanks to the ina­de­quate treat­ment of T4.
3. Rai­sing T4 often encou­ra­ges an excess pro­duc­tion of Reverse T3 over time, which will block cell recep­tors and inc­rease the very symp­toms the researcher state is avoi­ded, as well as far more hypothy­roid symptoms.

But on the posi­tive side: this is just one more research study that ends up being on our side in our quest in teaching our doc­tors about far bet­ter treat­ment pro­to­cols. I have also inc­lu­ded men­tion of this study on the follo­wing page on STTM, where I keep a ongoing list of  research which sup­ports what patients already know by their expe­rience and cli­ni­cal pre­sen­ta­tion:  http://www.stopthethyroidmadness.com/medical-research/

Well, I just can’t let this go by the way­side, says I with a cheesy grin.

When I did the lighthear­ted post, two posts below his one, about a woman who got filthy rich thanks to her old stock with Abbott Labs (the makers of Synth­roid),  it got a humo­rous and crea­tive com­ment from “Elizabeth”:

I have found a cou­ple of uses for a bottle of Synthroid:

A. Doors­top
B. Prop for DSL modem (so it won’t overheat)

Howe­ver, I do not recom­mend it to be taken inter­nally. Ever.

hahahaha.  You get a blue rib­bon for that gem, Mz. Eli­za­beth.  And I think Elizabeth’s creatively-funny reply deser­ves expan­sion and a party of fun-lovin’ con­tri­bu­tors. So now it’s your turn, fine rea­der of the STTM blog,  to list your own inno­va­tive and hila­rious ideas for that bottle of a T4-only medi­ca­tion.  Just use the Com­ment below this post and let ‘er rip.

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Below this post you’ll see infor­ma­tion on the current fai­lure of McCain’s coc­ke­yed anti-supplement bill, which if it had pas­sed, would have nega­ti­vely affec­ted every sin­gle thy­roid patient out there who is trying to undo the damage done by T4 meds and/or the inane TSH lab test.  So though we all won right now with this fai­lure, you betcha we’re going to have to keep our eyes and ears open for the money-grubbing Big Pharma to influence someone else about supplements.

Yup, we’re all hea­ding in the same direc­tion — being just a tad older every sin­gle year and get­ting that first mai­ling from AARP.  Yup.

And get­ting older inc­rea­ses the inci­dence of thy­roid disease.

Even worse, those who acquire it at an older age are pro­bably going to go through the same bunk and bull those youn­ger have gone through – having depres­sion, rising cho­les­te­rol, osteo­po­ro­sis or oste­pe­nia, weight gain, easy fati­gue, couch potato syn­drome, dry skin and hair, plus more––all clas­sic symp­toms of undiag­no­sed or under­trea­ted hypothyroidism.

But older folks are told it’s all just part of aging so here’s your latest tablet for your handy-dandy Wal Mart pill box.

I recently found a great blog by Pam whose Feb. 23^rd, 2010 post is tit­led Older Women and Low Thy­roid. She tur­ned 65 in 2009 (and she looks a lot youn­ger) and wri­tes how she found her­self with hypothy­roid at a later age as well.  And Pam is WAY ahead of the game in her know­ledge. She unders­tands that most older folks are put on Synth­roid (which can be a lousy way to treat hypothy­roi­dism for many), that get­ting older means con­ver­sion from T4 to T3 can be more dif­fi­cult,  that being on desic­ca­ted thy­roid or T3-only just might be the bet­ter treat­ment, and you can get adre­nal fati­gue at an older age as well (thanks to poor treat­ment with T4, the TSH lab test, or being under­do­sed even on desic­ca­ted thyroid).

You can read Pam’s post here, as well as about the phone call from her friend who is 50 lbs over­weight, has brain fog, is out of work, has no energy…and voila – is on Synth­roid so it can’t POSSIBLY be her thy­roid. Sad. In fact, what has hap­pe­ned to Pam’s friend is what I keep sta­ting to those who feel they are just doing peachy on T4: watch out, because as you age, the truth about T4 will reveal itself!

Pam, I love your blog posts, and I’m going to hope to see more of those in the “vene­ra­ble age range” be just as wise as you are!!

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FDA HAS MADE A STATEMENT ABOUT NATURAL DESICCATED THYROID: Just before I was going to plop into my bed for the eve­ning, I chec­ked my noti­fi­ca­tions to dis­co­ver that right on the FDA web­site and their 2010 Drug Shor­ta­ges page (3^rd column up from bot­tom), it sta­tes: Forest reports manu­fac­tu­ring issues invol­ving the raw mate­rial and RLC reports inc­rea­sed demand. FDA has not orde­red Forest or RLC to remove these thy­roid (desic­ca­ted) tablets from the mar­ket. BINGO. I’ve been wai­ting for this for months, because though web­si­tes and groups were for­med last year as if we nee­ded to “res­cue” desic­ca­ted thy­roid from being ban­ned, I couldn’t join the fear­ful rally of a few because my gut was telling me something quite dif­fe­rent.  And a few others, I dis­co­ve­red, had the same fee­ling.  And hoo­ray! Our guts were right on!

Does this mean the FDA “gets it” about desic­ca­ted thy­roid? Maybe, or maybe not. Yes, their timing WAS awful last year with Time Caps Labs, right when we were star­ting a shor­tage. And there does appear to be some kind of future requi­re­ment “pro­ving” the safety and effi­cacy of dess. thy­roid – two things we ALREADY KNOW from 110 years of safe and effec­tive use. Duhhh on the FDA. But it’s FAR more hope­ful now, and rea­lis­tic, and will hope­fully pro­mote more rea­so­na­ble thin­king from now on.

Onward and upward, folks.

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Natu­reth­roid is coming back in phar­ma­cies all over the US! See the blog post below or here for infor­ma­tion about  the “new” Naturethroid.

(If you are rea­ding this via the News­let­ter email noti­fi­ca­tion, just click on the title of this blog post to come directly to the site where you can Comment).