T4-only tags

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.

There was a time when I thought being hypo without a thy­roid was really no dif­fe­rent than being hypo with one.  Hypo is hypo.

But I was wrong. There really is a dif­fe­rence in our jour­neys – even if we both end up with hypothy­roi­dism — and four strong ones:

1. It’s no pic­nic to lose one’s thy­roid. Sur­gi­cal remo­val, called a thy­roi­dec­tomy,  can come with neck sore­ness, loss of one’s voice, and other com­pli­ca­tions. inc­lu­ding the loss of parathy­roids.  Treat­ment with RAI, or Iodine 1 – 131 to kill the thy­roid, has it’s own life­long side effects, inc­lu­ding gas­troin­tes­ti­nal issues, paro­tid sali­vary gland pro­blems, and more.  A good web­site about the con­tro­versy of RAI is atomicwomen.org.
2. The stress of sur­gery and/or RAI can do a num­ber on one’s adre­nals. I sus­pect that there is a high per­cen­tage of those who had sur­gery and/or RAI who also have adre­nal fati­gue with it’s night­ma­rish side effects, whether simply from the phy­si­cal stress of remo­val and/or treat­ment, or having a Synth­roid, T4-only obses­sed doc­tor.  Being on T4 is the num­ber one pre­dic­tor of adre­nal fatigue.
3. Some have a uni­que anguish about their vul­ne­ra­bi­lity. No one can live without a thy­roid.  And that thought with the abso­lute life­long depen­dency on thy­roid meds is not a com­for­ta­ble state.
4. Life long regret can be huge. Many patients came to rea­lize, after remo­val, that they may not have nee­ded the remo­val at all if they had known about the fallacy of the TSH lab test, or the idiocy of T4-only meds, or poten­tial bene­fits of iodine, or natu­ral desic­ca­ted thy­roid like Natu­reth­roid, com­poun­ded, or Erfa Thyroid.

Read the latest per­so­nal and gut-wrenching blog post by thy­roid can­cer Stepha­nie Buist, who is thy­roid­less after treat­ment for thy­roid can­cer nearly 10 years ago.  Also see the Talk to Others link below to find the Thy­roid­less yahoo group.

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Curious what’s going on with Natu­reth­roid or Westh­roid pro­duc­tion and avai­la­bi­lity? RLC Labs has a Patient Infor­ma­tion Line you can always call for the latest infor­ma­tion on Natu­reth­roid and Westh­roid avai­la­bi­lity: 877 – 600-4752.

Want to write a post for the STTM blog?? Begin­ning in 2010, I will be revie­wing and accep­ting “thy­roid patient guest posts” on the STTM blog in bet­ween my own. You can read about it here: www.stopthethyroidmadness.com/writing-a-guest-blog-post-on-sttm/

Want to honor someone who has hel­ped you?? See the blog post below and thank someone.

NOTE: if you were recei­ving email noti­fi­ca­tions about these posts,  the com­pany doing them is out of busi­ness. Ins­tead, use an RSS Feed.

The year of 2009 will long be remem­be­red for two night­ma­res straight out of Twi­light Zone for thy­roid patients: 1) Armour desic­ca­ted thy­roid by Forest Labs was refor­mu­la­ted with patients glo­bally repor­ted a return of symp­toms and new frus­tra­ting ones, and 2) shor­ta­ges of all US-made natu­ral desic­ca­ted thy­roid like Armour, Natu­reth­roid and Westh­roid occu­rred, as well as no more gene­rics thanks to the FDA.

Addi­tio­nally, as I write this, Natu­reth­roid and Westh­roid by RLC Labs are still hard to get – making too slow a return on phar­macy shel­ves which may not improve until 2010. You can read details and a good sum­mary about this on about.com.

But there’s been a sil­ver lining to this situa­tion: Canada’s “Thy­roid” by Erfa.

Many patients made a switch to this desic­ca­ted thy­roid pro­duct, using online phar­macy web­si­tes and their presc­rip­tions from their doc­tors. And ove­rall, the expe­rience of patients with Erfa’s Thy­roid has been extre­mely positive.

I had a won­der­ful chat this week with Dr. Henri Knafo, the Direc­tor of Medi­cal Affairs at Erfa Canada Inc.  My first and most impor­tant ques­tion: Is there enough Thy­roid for all your patient cus­to­mers?? And I got an une­qui­vo­cal “Yes” from Dr. Knafo.  He explai­ned there are no con­cerns with run­ning out and they have plenty in stock, now and in the future. He sta­ted that if their stock gets low from sud­den demand, they can easily get more and quickly.

I also asked: Is ship­ping timely? Defi­ni­tely yes, Dr. Knafo sta­ted. But he also qua­li­fied that Erfa is over­loa­ded with orders. And though they are kee­ping up, your presc­rip­tion order can take time to pro­cess. But, he sta­ted “Be Patient. It will arrive!”

What is going on with the FDA and Erfa? He unders­co­red that the FDA is coo­pe­ra­ting com­ple­tely, and they see a good future with the FDA.  They are com­ple­tely tole­rant, said Dr. Knafo, because they seem to unders­tand the shor­ta­ges. Erfa’s Thy­roid is also com­ple­tely appro­ved and regu­la­ted by Health Canada. As far as the future and the FDA, Dr. Knafo strongly feels that once the FDA is reas­su­red about desic­ca­ted thy­roid, things will only get bet­ter for US patients with brands and avai­la­bi­lity. He feels that issues with the FDA are far more posi­tive than many thy­roid patients and lea­ders seem to get or want to see.

Do you see chan­ges towards opi­nion of desic­ca­ted thy­roid?  Defi­ni­tely, yes. Dr. Knafo recently atten­ded a Euro­pean medi­cal con­fe­rence with over 50 spe­cia­lists and he saw many doc­tors not satis­fied with Synth­roid and noti­cing the bet­ter treat­ment with desic­ca­ted thy­roid. “It’s boo­ming in Europe”, he unders­co­red about Erfa and desic­ca­ted thy­roid  “Even Endo’s are noti­cing”.  He also said that Bel­gium was expe­rien­cing a huge medi­cal trend away from T4 and towards desic­ca­ted thyroid.

Why has the cost of Erfa’s Thy­roid gone up even more than 50%?? His expla­na­tion was three-fold:  it was first a finan­cial deci­sion, since they have never made much of a pro­fit on desic­ca­ted thy­roid. Second, Health Canada requi­res a lot of expen­sive tes­ting from Erfa on pro­ducts. And third, since they buy their pow­de­red desic­ca­ted thy­roid from Europe, an inc­rease in Euros meant they nee­ded to inc­rease the price.

Any final com­ments? Dr. Knafo cla­ri­fied: Erfa has been making Thy­roid for 30 years and not only will that con­ti­nue, they will not change the for­mula. He thinks the sugar in Thy­roid is what makes absorp­tion so good, and that will con­ti­nue as an ingre­dient just as it is.  Nothing will change! To see ingre­dients of Erfa’s Thy­roid and other brands, go here.

You can read more about Erfa from my Sep­tem­ber 2^nd post.   Thank you to Dr. Knafo for being so can­did and informative!

See my post below about my mother, who lived her entire adult life under­trea­ted on T4 with depres­sion and elec­tric shock treat­ment and had no inter­net to com­pare notes. If you have a rela­tive from the past with a simi­lar story, add the story to the Comments.

*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!

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!