Janie's Blog

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.

Ans­wer: Most are duds.

On Mon­day, I had an enjo­ya­ble expe­rience with an excep­tion to the lemon cliche:  I was a guest on Dr. Ste­ven F. Hotze’s radio pro­gram Health and Well­ness Solu­tions, broad­cast live from Hous­ton, Texas.  You can lis­ten to a recor­ding of our con­ver­sa­tion here on the lower right under the hea­ding Dr. Hotze Radio in orange.

The com­mer­cials were like flies, zeroing in often and irri­ta­tingly. But we mana­ged to briefly men­tion both Stop the Thy­roid Mad­ness as well as the Hotze Health & Well­ness Cen­ter.

And two things struck me about our friendly chat: first, Hotze men­tio­ned that he star­ted presc­ri­bing natu­ral desic­ca­ted thy­roid in the 1990’s, far ahead of most doc­tors even today!  If only we knew.  And second, he made a quick men­tion of how disap­poin­ting most doc­tors are for patients, refe­rring to the STTM page called Give Me A Break. If you haven’t seen it, or it’s been awhile, you will find it both hila­rious and com­ple­tely sad.

And it all made me pon­der how in 2010, eight years after I per­so­nally found the life chan­ging desic­ca­ted thy­roid,  there are still so many family prac­ti­tio­ners and Endoc­ri­no­lo­gists kee­ping thy­roid patients sick all over the world, even if they mean well, even if they are good peo­ple, even if they do other diag­no­ses and treat­ments correctly.

So on one hand, it’s rea­lity that pro­gress is slow. But on the other hand, the thy­roid treat­ment wall of igno­rance is slowly tum­bling down about bet­ter thy­roid treat­ment thanks to patients who read about it and carry that infor­ma­tion into their doc­tors offices.

So perhaps over time, the lemons who prac­tice bad thy­roid treat­ment will become less and less pro­mi­nent in the name of enligh­ten­ment, wis­dom and LISTENING to patients.

P.S. And by way, if you are lucky enough to have found one of those docs who presc­ribe desic­ca­ted thy­roid, remem­ber that NO doc­tor is all-knowing. YOU live in your own body, and can have your OWN wis­dom and know­ledge. So expect the rela­tionship be a part­nership. And if you can’t get that part­nership, find a bet­ter doc­tor.

Want to read more about natu­ral desic­ca­ted thy­roid? Go here.   To read my own story, go here.

It appears that the report seve­ral days ago by the Cana­dian Broad­cas­ting Cor­po­ra­tion about natu­ral desic­ca­ted thy­roid was a disap­point­ment to one who was inter­vie­wed. See the blog post below.

So I am glad to announce that Ste­ven F. Hotze, M.D. and I will be doing a good pro­gram that does NOT need a totally misin­for­med Endoc­ri­no­lo­gist for the sake of “balance”!

I will be a guest on “Health & Well­ness Solu­tions” radio pro­gram of Dr. Hotze on April 12^th (NEXT MONDAY) to talk about hypothy­roi­dism. The radio show airs Mon-Fri from 12-1pm CST on 700 AM KSEV-Houston, Texas and on the inter­net through www.DrHotze.com. Our part will start at 10:15 am Paci­fic, 11:15 am Moun­tain, 12:15 pm Cen­tral, and 1:15 pm Eastern.

You can also read his Press Release about this upco­ming show.  Dr. Hotze runs the Hotze Health & Well­ness Cen­ter in Hous­ton, Texas – a prac­tice which belie­ves the pri­mary cri­te­rion for diag­no­sis, and for eva­lua­ting the effects of treat­ment, is how a patient feels. 

So mark your calen­ders, set your cell phone alarms.  IF CANADA BROADCASTING CAN’T GET IT RIGHT, JANIE BOWTHORPE WILL!!!

(Mon­day April 5^th Postsc­ript to my blog post below: One of the patients inter­vie­wed by this repor­ter sta­tes the follo­wing: The report left the impres­sion that we (desic­ca­ted thy­roid users) are a teeny little group on the frin­ges of medi­cine, rather than a ground swell of well researched patients trying to improve our health (and every aspect of our lives) with ratio­nal, com­mon sense alter­na­ti­ves. We are still voi­ces crying in the wil­der­ness, and igno­red by the mains­tream medi­cal pro­fes­sio­nals. C’est la vie.)

Finally.

After years of near-complete silence by the mass media about the pro­found 60-year medi­cal scan­dal of T4-only treat­ment like Synth­roid, as well as lives chan­ged due to natu­ral desic­ca­ted thy­roid, we have some pro­gress.

A few weeks ago, I was con­tac­ted by health repor­ter Pau­line Dakin of CBC (Cana­dian Broad­cas­ting Cor­po­ra­tion) Radio. She was pre­pa­ring a report on thy­roid treat­ment and desic­ca­ted thy­roid, asking for names of Cana­dian patients and doc­tors who might speak of their own expe­rien­ces. Among others, I got her in touch with Cana­dian thy­roid patient The­resa Roberts, who has remin­ded me of this report.

And, Pau­line Dakin’s report on desic­ca­ted thy­roid will be pre­sen­ted TODAY, Eas­ter Sun­day, on CBC Radio One on “The World This Wee­kend” at 6:00 pm Eas­tern Time (5 pm Cen­tral, 4 pm Moun­tain and 3 pm Paci­fic). It’s a com­prehen­sive 1/2 hour news pro­gram that airs natio­nally on wee­kend eve­nings and takes an in-depth look at current issues.

And even if you aren’t in Canada, you can lis­ten to this pro­gram on CBC Radio One live at http://www.cbc.ca/worldthisweekend/ , or you can down­load the pod­cast (which may require free subscription).

HIGH FIVE to Pau­line Dakin and the Cana­dian Broad­cas­ting Corporation.

The 60-year use of T4-only medi­ca­tions like Synth­roid, Levoxyl, Eltro­xin and other brands has NOT wor­ked for hun­dreds of millions world­wide, resul­ting in each patient’s amount and degree of lin­ge­ring symp­toms of hypothy­roi­dism as well as the added misery of adre­nal fatigue.

We have also been ban­dai­ded with anti-depressants, sta­tins, pain meds, high blood pres­sure meds and more, all the while being told by our clue­less doc­tors that we are schi­zoph­re­ni­cally ’”nor­mal” because the also-lousy TSH test says so.

Or, like my own mother, we have been sub­jec­ted to Elec­tric Shock The­rapy because of depres­sion cau­sed by T4 meds and their ina­de­quate treat­ment.  You can read about my mother here.

Stop the Thy­roid Madness™!

P.S. Sign up for the “news­let­ter noti­fi­ca­tion” of this blog – see right below the links to the left. Or you can use your RSS feed page.

(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!™