stop the thyroid madness tags

(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!™

Yes­ter­day, I was mean­de­ring through a small biking/river run­ners store, exchan­ging a vest I got my son for Christ­mas that tur­ned out to be too large, and loo­king intently for a repla­ce­ment gift he’d like.

The only other shop­per left — a tall, dark and hand­some young man. And almost as quickly, he re-entered,  approached me, and asked if that was my car out there.

“My car?” I replied. “Yes, why?”

“I’m curious about the stic­ker you have on your back win­dow,” he sta­ted with a friendly but curious smile.

The stic­ker is of Cal­vin peeing on the word of a par­ti­cu­lar T4-only medi­ca­tion.  I give these away free if someone requests it with their current order of the STTM book.  And this was not the first time I’ve been asked about that attention-getting sticker.

So I pro­cee­ded to tell him that I’m a Thy­roid Patient Acti­vist, owner of Stop the Thy­roid Mad­ness, about the his­tory of T4, how lousy many patients have repor­ted doing on it for nearly 60 years with their own variety and inten­sity of lin­ge­ring hypo symp­toms, and how much bet­ter natu­ral desic­ca­ted thy­roid has been for patients all over the world.

I then inno­cently asked: “Are you on Synth­roid?” I just knew I had one more vic­tim of this treat­ment who nee­ded enlightenment.

“Nope”,  he said with a con­fi­dent and defiant air.  “I have until recently been a phar­ma­ceu­ti­cal rep with Abbott Labs.”

THWACK.   Stan­ding before me stood a mighty well-trained Big Pharma cham­pion for Synth­roid who was going to reveal and defend his pro­pa­ganda like a mas­ter. And that led to the most hea­ted and pier­cing give-and-take I’ve ever expe­rien­ced, right in front of the cha­gri­ned and wide-eyed sales per­son at the chec­kout desk. We were like sumo wrest­lers but­ting our words against each other.

When I explai­ned the slew of con­ti­nuing symp­toms repor­ted by patients world­wide who have been on T4, and no mat­ter how high they rai­sed it…his res­ponse?  “Those symp­toms can be the result of many issues other than hypothy­roi­dism.“

I res­pon­ded: “Well isn’t it odd that those who are hypo and on Synth­roid, and who get on desic­ca­ted thy­roid, find those symp­toms com­ple­tely removed.”

His reply?? “Heroin can do the same thing”.  Groan. I simply had to laugh at him. How many times have we heard the same kind of baloney.

He pro­cee­ded to tell me in great detail with each point he made that:

1. He has wor­ked with many patients and they do well on Synth­roid (A rep has wor­ked with many patients? And what in the world does “well” mean?)
2. Cli­ni­cal trials have pro­ven that Synth­roid works. (Ah! You mean those finan­ced by Abbott Labs and which are con­trary to the repor­ted expe­rience of millions of patients around the world? Those??)
3. The TSH lab test gives proof about the effi­cacy of T4 (Funny how patients all over the world have pro­ven by their con­ti­nuing symp­toms that the TSH lab test for the diag­no­sis and treat­ment of hypothy­roi­dism belongs at the bot­tom of a trash heap)
4. There are many dif­fe­ren­ces in the effi­cacy of T4 brands to explain any issues in patients (Funny how not ONE brand of T4 has been exempt from lea­ving con­ti­nuing symp­toms accor­ding to the glo­bal rex­pe­rience of a huge body of patients) 
5. Bla­ming T4 for the amount of adre­nal fati­gue that “sup­po­sedly” some T4-treated patients find them­sel­ves with is silly since there can be other rea­sons for it. (Another laugh on my part.  Clearly, when someone isn’t ade­qua­tely trea­ted on T4, something has to kick in to keep them going, and voila – it’s those trusty dusty adre­nals which even­tually just poop out thanks to T4 and the TSH.)

There were much more machine gun stan­ces bet­ween us, but that would make this blog post far too long.

One truth we did agree on? That “some” patients do get bene­fit from using T4. He spe­ci­fi­cally refe­rred to the elderly. And my quick res­ponse? Why accept “some” when patients all over the world report get­ting rid of that “some” with desic­ca­ted thy­roid (and espe­cially for cer­tain ones who also treat their low cor­ti­sol, low ferri­tin, and other issues most likely rela­ted to an infe­rior treatment.)

Clearly, we were each dead­loc­ked in our posi­tions.  And he conc­lu­ded, loo­king at the sales asso­ciate, that neither of us were wrong; we just repre­sen­ted two sides.

And I tur­ned my head, loo­ked him straight in the eye, and said:  Uhhh, no. YOU are com­ple­tely and totally wrong.

P.S. After he left, the sales gal said she was totally in tune with what I was saying, and wrote down the name of this web­site. lol lol

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See the blog post below about favo­red Cana­dian phar­ma­cies, plus many more com­ments by patients.

What the heck is going on with desic­ca­ted thy­roid and current shor­ta­ges? Read about it here.

Seve­ral years ago, a large per­cen­tage of thy­roid patients on yahoo groups like NTH were figu­ring out that they had adre­nal fati­gue, aka low cor­ti­sol, from years of adre­nals wor­king over­time due to the ina­de­quate TSH lab test, or being on the lousy T4-only medi­ca­tions like Synth­roid, Levoxyl, levothy­ro­xine, Eltro­xin, etc.

Not only does low cor­ti­sol keep desic­ca­ted thy­roid from wor­king well, it also cau­ses all sorts of angst with para­noia, depres­sion, anxiety, easy anger, sen­si­ti­vity to light and/or sounds, rec­lu­si­ve­ness, sleep issues and more.

First, patients dis­co­ve­red the impor­tance of using the 24 hour adre­nal saliva test rather than blood or urine. When low cor­ti­sol was con­fir­med, the treat­ment was using cor­ti­sol, aka hydro­cor­ti­sone, to give them­sel­ves back what their adre­nals were not, to allow thy­roid hor­mo­nes to reach the cells, and to give the poo­ped out adre­nals a rest.

And suc­cess was achie­ved! When all other issues were dis­co­ve­red and trea­ted, patients were finally able to heal their adre­nals with cor­ti­sol use, wean off, and be suc­cess­ful in their con­ti­nued treat­ment with desic­ca­ted thy­roid! That suc­cess con­ti­nues today!

Yet in spite of clear suc­cess in the treat­ment of low cor­ti­sol with sup­ple­men­tal cor­ti­sol in the correct amount for each indi­vi­dual (which can range from 15 to 40 mg gene­rally – men often need the higher end), as well as exce­llent books on the sub­ject by Wil­son, Peat­field, Jef­fries and the STTM book, patients like RD below still encoun­ter doc­tors who fill their minds with all sorts of fear and warnings:

I bought your book and later on I dis­co­ve­red your web­site which are both great. They are a superb source of infor­ma­tion and sup­port for thy­roid and adre­nal fati­gue suf­fe­rers. Thank you so much!

Per­so­nally I got adre­nal fati­gue by a sus­tai­ned lack of sleep for seve­ral years (crying babies).  I found a doc­tor who presc­ri­bed Hydro­cor­ti­sone (17.5 mg/day, 5 – 5-5 – 2.5), Flu­dro­cor­ti­sone, DHEA and Tes­tos­te­rone. Symp­toms disap­pea­red in about 2 weeks.

A first attempt to wean off after 6 months made some serious symp­toms reap­pear very quickly, so I retur­ned to the ori­gi­nal dose.

It is very stress­ful that many esta­blished doc­tors (our family doc­tor, and my wife’s thyroid-endocrinologist) are sca­ring me like hell that I am taking HC. They are saying I am des­tro­ying my body and I will never suc­ceed in wea­ning off HC.

My wife is a T4-only thyroid-patient with low-cortisol symp­toms. She also has been sca­red about des­si­ca­ted thy­roid and HC. Rea­ding your book I was howe­ver con­vin­ced she could bene­fit a lot from a bet­ter treatment…

Keep up the good work, as patients we are really left alone in the dark by our doctors…

And unfor­tu­na­tely, it’s true. Thy­roid and adre­nal patients are left in the dark by many doc­tors about a variety of issues rela­ted to bet­ter thy­roid treat­ment, adre­nal issues, low ferri­tin, and more.  So here’s where you can read more, and in turn, take this impor­tant infor­ma­tion into your doc­tors offices:

• All about the pro­blem of adre­nal fatigue
• How to treat
• Symp­toms of having an adre­nal problem
• The STTM book, which not only has more detail, but can be taken right into the doctor’s office
• Talk to other patients, inc­lu­ding a group tar­ge­ted for adre­nal fatigue

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If you mis­sed the exce­llent Part 2 with researcher Dr. John C. Lowe last Thurs­day eve­nings, you can lis­ten to the recor­ding, as well as sign up to be a Follo­wer of the Thy­roid Patient Com­mu­nity Call, here.

Anyone who lis­te­ned to the Thy­roid Patient Com­mu­nity Call last night will know that we were lis­te­ning to a powerhouse of a man with an encyc­lo­pe­dia of valua­ble infor­ma­tion: Dr. John C. Lowe.

He is the author of an exhaus­tive book on Fibrom­yal­gia called The Meta­bo­lic Treat­ment of Fibrom­yal­gia, which explains how the pro­per diag­no­sis and treat­ment of hypothy­roi­dism is a good choice in the treat­ment of fibro. He also owns drlowe.com and the research web­site Thy­roid Science.

I already knew he was great. He’s lis­ted in the Ack­now­led­ge­ments of the Stop the Thy­roid Mad­ness book as one of a hand­ful of medi­cal pro­fes­sio­nals who pla­yed a huge role in edu­ca­ting and empo­we­ring patients all these years.  He, like the others, was a spring­board for patients to move for­ward in gai­ning far bet­ter infor­ma­tion about thy­roid treat­ment and everything else we have have lear­ned over the years!

And he has agreed to come back, since we had many more ques­tions to ask him! I’ll announce that when we secure a date.

Below are some high­lights from our talk with Dr. Lowe:

1. The use of high dose B-vitamins is very impor­tant for the thy­roid patient, and even more so when you are fee­ling bet­ter in your treat­ment. Thy­roid inc­rea­ses the pro­duc­tion of pro­tein, which dri­ves energy, and you’ll need the B’s to help this higher energy production.
2. Sadly, it’s eco­no­mics which domi­nant science and and researching, and it’s all for mar­ke­ting pur­po­ses ins­tead of the pur­suit of truth and the real health of patients.
3. What dri­ves your medi­cal inves­ti­ga­tions? To gain wealth, or to help patients?
4. 75% of the time, if a doc­tor uses the TSH to either diag­nose hypo or treat it, he will be wrong.
5. In the 1980’s, the top of the TSH range was 7.5.
6. Abbott Labs, the makers of Synth­roid, gives one million dollars in an unres­tric­ted edu­ca­tio­nal grant to the Ame­ri­can Asso­cia­tion of Cli­ni­cal Endoc­ri­no­lo­gist (AACE) i.e. no won­der Endoc­ri­no­lo­gists have a love affair with Synth­roid, a medi­ca­tion like other brands which has left the vast majo­rity of us under­trea­ted. You can read more details from Lowe on this sub­ject here.
7. Iso­cort, an OTC treat­ment for low cor­ti­sol, is pro­tec­ted by the 1994 Die­tary Sup­ple­ment Health and Edu­ca­tion Act.
8. HC, aka hydro­cor­ti­sone, is water solu­ble. Iso­cort is fat solu­ble. Peo­ple need bile so the lipase enzy­mes are able to work on it.
9. There are no stu­dies to com­pare Iso­cort to HC, and should be.
10. If swa­llo­wing, take thy­roid one hour before eating for best absorp­tion. If meal will have a lot of fat, 3 – 4 hours before eating.
11. Elderly peo­ple have less Hydroch­lo­ric Acid and do a worse job absor­bing nutrients. (And so do under­trea­ted hypo patients, remin­ded Diane)  Betaine is a good sup­ple­ment to help.
12. Why it can be a bad idea to swa­llow thy­roid with meals: we never know how many com­pounds are in the food that will bind it, like cal­cium and iron.  T4 is the most badly absorbed.

To hear more, just click above and lis­ten to the recor­ded call. Thank you for being you, Dr. John C. Lowe.

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BRRRRR. In the US and many other coun­tries,  we are having one of the col­dest win­ters we’ve seen in a long time. And if you are out in it alot, you may need a tad more thy­roid meds to keep your­self optimal.