• +Audience
• Janie's experience
• Related conditions due to hypo
• Thyroid treatment
• desiccated thyroid
• t4

Tonight was a beau­ti­ful night to do my aero­bic wal­king. It had pou­red this after­noon for 30 minu­tes, so the early eve­ning air was slightly cool and very clean.

And on the last leg of my jour­ney, I stop­ped and said to Car­lin as she was wal­king out of her front door “Where you have been lately? I haven’t seen you out wal­king with your husband.”

Car­lin and her hus­band Clint are pro­bably in their late 70’s – both vibrant indi­vi­duals and fre­quent wal­kers in the same area.

“Well”, she said wist­fully as she glan­ced down the street I had just wal­ked, “I have to go in Mon­day for a Pacemaker.”

Turns out she has fibri­lla­tions and other heart issues, and even wal­king from her bedroom to her living room can exhaust her.  I told her how well my mother-in-law has done with her pace­ma­ker. She told me she’d be in the hos­pi­tal for at least 3 – 4 days for the sur­gery and observation.

And as we were chat­ting over the low white fence, I couldn’t help but notice the scar on her neck – the same scar my own mother had from the remo­val of her thy­roid years ago.  And the rest of Carlin’s story, and the rea­lity of her story, made me want to punch the nea­rest elec­tri­cal pole in disgust.

Carlin’s thy­roid was remo­ved over 40 years ago.  She remem­bers being on “2 grains of something” – clearly it was desic­ca­ted thy­roid. And she says she felt really good. But she wasn’t on it long, as her doc­tor remo­ved it and put her levothy­ro­xine over 30 years ago. You know, that “new and modern” T4-only CRAP which doc­tors fell for like the blind follo­wing the blind begin­ning in the 1960’s until today. (The story behind the intro­duc­tion of T4 onto patients in the early 1960’s is in Chap­ter One of the STTM book)

So I knew. Her heart trou­bles could be one of the many side effects of the infe­rior treat­ment of T4-only medi­ca­tions (which also inc­lude Synth­roid, Levoxyl, Eltro­xin, Oroxine…all of them). My own mother suf­fe­red the same fate while on Synth­roid her entire life. And patients chat about this all the time on thy­roid groups – heart issues while on T4.

I star­ted pro­bing. She has had issues with high blood pres­sure. Another typi­cal side effect of the crap T4-only medi­ca­tion, and which is remo­ved with desic­ca­ted thy­roid. She has had issues with depres­sion – another typi­cal side effect of the crap T4-only medi­ca­tion, and which is remo­ved with desic­ca­ted thy­roid. She tal­ked bit­terly about the slew of medi­ca­tions she’s had to be on for years to coun­ter all her pro­blems, and which had given her bad side effects.

And the next worse thing she told me? She had acid reflux so bad a few years ago that they did sur­gery on her sto­mach. She had sur­gery for a con­di­tion which is VERY com­mon with thy­roid patients who are on T4 meds – low sto­mach acid from a lower meta­bo­lism, which cau­ses acid reflux. i.e. a symp­tom of con­ti­nued hypothy­roi­dism which is CORRECTED when on desic­ca­ted thyroid.

It was hard to con­tain myself. Here was this vibrant, life-loving, inte­lli­gent woman who has been on T4-only for over 30 years and has endu­red health pro­blems, sur­ge­ries, side effects from all sorts of money-grubbing phar­ma­ceu­ti­cal pills, and now, has to go in Mon­day for a pace­ma­ker. And in all pro­ba­bi­lity, most of what she has gone though could have been pre­ven­ted if some doc­tor had been WISE enough to keep this woman on desic­ca­ted thyroid.

I am livid and sick to my stomach.

****************************

• Are you che­wing up your Armour or Natu­reth­roid? It will make the treat­ment far bet­ter, as it will release the desic­ca­ted thy­roid from the excess cellu­lose.  If you are on com­poun­ded, you need to tell the phar­ma­cist to stop using cellu­lose as a filler. On Erfa? You can do it sublingually.
• If you are rea­ding this right on STTM’s blog, and would like to be noti­fied of each blog post, just sign up to the left and under the links.
• Have you done labs and found your­self with high RT3? Get off Sele­nium for the time being, as it can help con­vert T4 to the RT3 along with the other rea­sons you make too much.
• Want to spread the word about far bet­ter treat­ment? T-shirts and bum­per stic­kers are here.

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.

(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!™

And now that I have your atten­tion, here’s the ans­wer straight from the mouth of Kenny Soe­joto, Chief Ope­ra­ting Offi­cer of the only North Ame­ri­can maker of desic­ca­ted por­cine natu­ral thy­roid pow­der (Ame­ri­can Labo­ra­to­ries): a firm NO!

“We have amply supply and so do the dis­tri­bu­tors for com­poun­ding phar­ma­cists”, unders­co­res Soe­joto when I chat­ted with him today.

He also added in res­ponse to the recent shor­ta­ges:  “We didn’t spare an expense to push it along”.  i.e  “Ame­ri­can Labo­ra­to­ries have caught up with all bac­kor­ders, with the excep­tion of one major com­pany which has tight spe­ci­fi­ca­tions, but they should be caught up by the first quar­ter in 2010″, explai­ned Soejoto.

So what about spe­ci­fic rumors we keep hearing??

1. My com­poun­ding phar­macy said they weren’t able to get it. Kenny explai­ned that a small com­poun­ding phar­macy often can’t afford the mini­mum order that Ame­ri­can Labo­ra­to­ries requi­res, nor does the sma­ller phar­macy want that much, which is an 110 lb drum of pow­der.  So, says Soe­joto, they need to con­tact their dis­tri­bu­tor, who is the middle man bet­ween a com­poun­ding phar­macy and Ame­ri­can Labo­ra­to­ries. “The dis­tri­bu­tor for com­poun­ding phar­ma­cies, ” explai­ned Kenny, “will buy the lar­ger amounts, make sma­ller pac­kets, and then sell those to the com­poun­ding pharmacies”.
2. Ame­ri­can Labo­ra­to­ries can’t be the only North Ame­ri­can makers of pow­de­red thy­roid because my com­poun­der told me a dif­fe­rent name. The dif­fe­rent name you heard is the middle man men­tio­ned above – a dis­tri­bu­tor for the thy­roid pow­der to the com­poun­ding phar­macy. But that dis­tri­bu­tor got their supply from Ame­ri­can Laboratories.
3. My regu­lar phar­macy said there is a supply issue for the brand I wan­ted. Again, Kenny explains there is no supply issue – they have plenty. Any phar­ma­ceu­ti­cal com­pany that makes desic­ca­ted thy­roid has to have ongoing cre­dit worthi­ness and docu­men­ta­tion before AI can sell to them. Also, we are simply expe­rien­cing con­ti­nued demand being grea­ter than supply, and it can take time to catch up.  i.e. there may be more to the story than you hear under any com­ment about a supply issue problem.

In conc­lu­sion, Kenny Soe­joto said they simply got into trou­ble from the growth of inte­rest in desic­ca­ted thy­roid the past few years, and they are much bet­ter pre­pa­red. Even Europe is inqui­ring more about it, he said. And my res­ponse to him?? Get ready, because you are doing millions of poten­tial thy­roid patients a HUGE favor by making it,  and we’re going to con­ti­nue to spread the world about natu­ral desic­ca­ted thy­roid. 

Check out posts below about other impor­tant issues, inc­lu­ding more from Erfa, plus the pro­blem of cellu­lose in com­poun­ded and regu­lar desic­ca­ted thyroid.

*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!