thyroid disease tags

I con­fess that I hated my Che­mistry class in high school, even if Mr. Bowen tried to make it inte­res­ting and favo­red the girls over the boys in class.  But lo and behold, one of those ele­ments on the Perio­dic Table ended up having a sig­ni­fi­cant role in all or our lives as thy­roid patients: iodine.

Iodine can be found in every inch your body, but is espe­cially pre­va­lent in your thy­roid, which makes it an inte­res­ting ele­ment for those of us with thy­roid disease.  The active thy­roid hor­mone T3 (triio­dothy­ro­nine) is made up of three iodine mole­cu­les, and the sto­rage hor­mone T4 (thy­ro­xine) has four iodine mole­cu­les. In fact, without pro­per amounts of iodine, your thy­roid wouldn’t even func­tion well.

An opti­mal amount of iodine has also been shown to improve breast health, pro­vide can­cer pro­tec­tion, remove toxins like Bro­mide, fluo­ride, mer­cury etc…and in some cases, has hel­ped thy­roid patients either lower their dose, or even get off thy­roid treat­ment. Thy­roid patient Diana tells of get­ting off thy­roid treat­ment due to iodine on the Sto­ries of Others page.

***This Thurs­day eve­ning on the Thy­roid Patient Com­mu­nity Call on TalkShoe, we’ll have guest Stepha­nie Buist, owner of the Yahoo group Iodine and a 9-year thy­roid can­cer sur­vi­vor who strongly feels iodine has been a huge fac­tor.   We’ll explore how much iodine a per­son needs, the loa­ding loa­ding test, the best sour­ces of iodine sup­ple­men­ta­tion, whether you need iodine, as well as con­tro­ver­sies with iodine use, inc­lu­ding Hashi­mo­tos disease or bad reac­tions.  Times for the call are 6 pm Paci­fic, 7 pm Moun­tain, 8 pm Cen­tral and 9 pm Eas­tern. You can lis­ten right on your com­pu­ter, or call to talk directly to Stepha­nie and Janie. Join us!

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Sheila Tur­ner of TPA-UK  (Thy­roid Patient Advocacy-UK www.tpa-uk.org.uk) is star­ting the ball rolling on something very inte­res­ting:  they have con­tac­ted a lab in the UK who will do a qua­li­ta­tive analy­sis of the old Armour vs. the new refor­mu­la­ted Armour to get a break­down of the ingre­dients, and poten­tially give us an idea WHAT is cau­sing thy­roid patients to have a return of their hypothy­roid symp­toms since Forest refor­mu­la­ted Armour in 2009.

Howe­ver, says Sheila, this will cost in the region of £600 to £700 (appro­xi­ma­tely $1100).  Says Sheila, “If there are enough patients who are willing and able to help raise the fun­ding requi­red by giving wha­te­ver we can afford, we could finally get the ans­wer as to which chan­ges have been made in the new for­mula and whether this inc­lu­des chan­ges in the active (as some have sug­ges­ted) and the inac­tive ingre­dients and put this baby to rest once and for all.” 

You can con­tact Sheila at the above web­site and make a pledge.  As I write this, they have already have £100 pledged.

UPDATE: Stepha­nie above has agree to be the ‘Pledge and Money Collec­tor’ for the lab work nee­ded to analyze the old vs new Armour . She can be con­tac­ted at ladybugsandbees@sbcglobal.net

*Want to be infor­med of these ‘fringe web­site’ blog posts?   Curious what’s on radi­cal Janie’s mind? Just use the Noti­fi­ca­tions on the left below the links.

* The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! I love sales!

* Pre­fer STTM in book form with more detail? You can read about it here.

*Need options for thy­roid treat­ment during the current shor­ta­ges. Go here.

Before my thy­roid disease of hypothy­roi­dism was dis­co­ve­red, I had horri­fic and debi­li­ta­ting con­se­quen­ces from exer­cise or any acti­vity.  You can read about it all here or even more detail in the Intro­duc­tion of the patients-to-patients Stop the Thy­roid Mad­ness book.

When my so-called “bor­der­line hypothy­roid” was dis­co­ve­red by age 30, I thought whoo-hooo, I’ll finally get rid of this strange night­mare whe­ne­ver I tried to do ANYTHING.  I was put on Synth­roid and my anti­ci­pa­tion for a bet­ter life was profound.

But my hope was dashed. Not only did my body con­ti­nue to ove­rreact to acti­vity, it got worse over time.  Horribly worse.  Nearly twenty years after I had star­ted on a T4-only medi­ca­tion, and was told by one doc­tor after another that my pro­blem was not my thy­roid, I was going to apply for social secu­rity disability.

But they were all dead wrong. Sure, turns out I have a form of Dysau­to­no­mia, a mal­func­tion and ove­rreac­tion of my auto­no­mic ner­vous sys­tem, cau­sing my body to far ove­rreact to stress. But remai­ning hypothy­roid, as we all do on the sucky t4-only medi­ca­tions, had made it far worse. And I pro­ved it. When I switched to Armour desic­ca­ted thy­roid in 2002 and rai­sed it accor­ding to what patients have lear­ned, a miracle occu­rred.  My severe auto­no­mic reac­tions made an almost com­plete tur­na­round.

And my expe­rience of change or impro­ve­ment when it comes to other disea­ses or con­di­tions has been sha­red by others.

Last week, I recei­ved an email from a man whose brother has MS – Mul­ti­ple Scle­ro­sis.  And though Armour has not taken his MS away, it allo­wed him to move from this wheelchair to a wal­ker! That is impressive.

So I am left won­de­ring:  what other con­di­tions or disea­ses, which are uni­que in them­sel­ves, are wor­se­ned being undiag­no­sed thanks to the lousy TSH lab test or the ina­de­quate treat­ment of Synth­roid, Levoxyl, levothy­ro­xine, Eltro­xin and all other T4-only medi­ca­tions? It’s awful to think about it.

Want to be infor­med of my blog posts? Curious what’s on my nind? Just use the Noti­fi­ca­tion on the bot­tom of the links to the left. 

Miche­lle, 40-or-50-something, came over to my house today to go over some paper­work. I hadn’t taken my Armour yet, and I said “Excuse me, I need to pop my thy­roid meds under my tongue.”

“Oh, I take thy­roid meds, too.  Synth­roid” she explai­ned as she was wri­ting on the papers with her pencil.

Now when I hear something like that, being who I am, I’m like a bear in a china cabi­net who sud­denly smells honey.  So as not to overwhelm,  I casually say “Oh, I used be on Synth­roid.” And after a long pause while we are going over the paper­work, I say “Did you know there’s a world­wide patient revo­lu­tion going on against medi­ca­tions like Synthroid?”

At the point, she rai­ses her head in curiosity.

I then stick my paw in the honey: “You and I and millions have been put on meds like Synth­roid and then told we are “nor­mal” because the TSH says so. But all of us have con­ti­nuing symp­toms of hypothy­roi­dism.  It’s a lousy medication. ”

And when I laid out what those con­ti­nuing symp­toms were, her eyes got as big as sau­cers and she was sha­king her head up and down in recog­ni­tion. “Depres­sion, rising cho­les­te­rol and blood pres­sure, easy weight gain, fati­gue, less sta­mina than others, dry hair and skin, fee­ling cold, etc”, I told her.

And the most pro­found aspect of Miche­lle? She lives her life like the Ener­gi­zer Bunny, going and going and going. She told me she often doesn’t get home until 6 pm doing her job, and she clearly has a lot of pro­fes­sio­nal responsibilities.

But does an active Miche­lle mean that Synth­roid works and is just as good a thy­roid treat­ment as desic­ca­ted thy­roid? You know the ans­wer. She revea­led that she’s quite tired when she comes home, wishes she had more energy, and still has issues with her weight, even though she lost some when she got on Synthroid.

And rea­ding bet­ween the lines, it was clear that Miche­lle is pro­bably on an anti-depressant, a sta­tin, and a blood pres­sure medi­ca­tion.  And…she clearly has an adre­nal pro­blem that’s only going to get worse. She has a terri­ble time falling asleep at night (high cor­ti­sol), and is very sen­si­tive to light and noise (high or low cortisol).

Sud­denly it daw­ned on me. I am sit­ting across hun­dreds of millions of women, and some men. I am lis­te­ning to how millions live their lives – making a living, main­tai­ning a home, loving their spou­ses and chil­dren, inte­rac­ting with peo­ple.  But under­neath it all, it’s not a pretty pic­ture. They cope, and they cope again.  And they dish out their money for more medi­ca­tions to treat the very symp­toms cau­sed by an infe­rior medi­ca­tion. And as they age, they’ll pay each of their millions of pri­ces, just as my mother did, and as I was hea­ded.  Ener­gi­zer bun­nies with faulty batteries.

P.S. Barack Obama has a health care reform plan. Will it change the lives of those 50 million with thy­roid disease in the US, or will it only con­ti­nue this T4-only tra­vesty and health care scan­dal?  Are we hea­ded in the same insane direc­tion as the UK when it comes to T4-only?  Express your opinion.

In the maga­zine India Today, it’s esti­ma­ted that there are at least forty million indi­vi­duals with thy­roid disease, accor­ding to Dr. Gana­pathi Bant­wal, faculty mem­ber of the Indian Thy­roid Society (ITS) and Pro­fes­sor and Head of Depart­ment of Endoc­ri­no­logy, St John’s Medi­cal College, Bangalore.

He adds that most are women, and most hypothy­roi­dism is occu­rring after the birth of a baby, called post­par­tum hypothyroidism.

The Indian Thy­roid Society wants to observe January 2009 as Think Thy­roid Month with experts calling  thy­roid rela­ted disor­ders as the next dia­be­tes to affect the nearly forty million Indians.

A side note from Janie: Sadly, when you visit the web­site of the Indian Thy­roid Society (which by the way was crea­ted by the Depart­ment of Endoc­ri­no­logy at Amrita Ins­ti­tute of Medi­cal Scien­ces in India), there is a flashing ad on most pages for thy­ro­xine called Thy­ro­norm. And guess who makes “Thy­ro­norm”? Abbott Labs in India, the same phar­ma­ceu­ti­cal in the US which pro­du­ces Synth­roid.  Anyone hear the theme song from Twi­light Zone pla­ying in the background??

Cuz it ain’t the one WE live on, dah’ling.

For a few years now, patients have repea­tedly writ­ten the Oprah show, beg­ging her to address the thy­roid scan­dal of deca­des of T4-only medi­ca­tion and the lousy TSH lab, both of which have left MILLIONS of patients with lin­ge­ring hypo symp­toms while our doc­tors proc­lai­med we were NORMAL…and about a FAR bet­ter treat­ment called natu­ral desic­ca­ted thy­roid and dosing by symp­toms, NOT the TSH. 

And when she finally has a pro­gram which somewhat addres­ses the thy­roid issue this week, she allows her hallo­wed guest, Dr. Chris­tiane North­rup, to state “your symp­toms are actually your soul’s way of brin­ging dee­per issues to your atten­tion.” Hog­wash! And thy­roid patient Mary Sho­man has rightly proc­lai­med that “thy­roid disease is NOT your fault, des­pite what Dr. North­rup says.”

But the issue goes even further. Oprah implies, by her own expe­rience, that taking a month vaca­tion and eating fresh foods is enough to make one well from thy­roid disease?? Dou­ble hog­wash! Thy­roid patients seek to live some of the healthiest lifesty­les there are. All you have to do is observe the con­ver­sa­tions in most any inter­net thy­roid patient talk group, and you will see daily posts on the best sup­ple­ments to take, healthiest foods to eat, and best ways to de-stress our lives. We are ove­rall a VERY edu­ca­ted group of patients about health, and we prac­tice it. We HAVE to be in light of how poorly edu­ca­ted most of our doc­tors are about our thy­roid disease. And in spite of all the above, our thy­roid con­di­tion per­sists.

What has CHANGED our lives is lea­ving the scan­dal of T4-only treat­ment in the dust, and lear­ning about desic­ca­ted thy­roid like Armour, switching to it, and dosing accor­ding to the eli­mi­na­tion of symp­toms, NOT simply labs. We have also faced the fact that at least 50% of us have adre­nal fati­gue, which lea­ves us impa­tient and angry, with hea­daches and body aches, chro­nic back pain and body aches, a loss of pas­sion, and sleep issues. And we have tread new ground in our know­ledge on how to treat it, when many of our doc­tors pooh-pooh the rea­lity of adre­nal fatigue. 

I love ya, Oprah, as do millions of women out there. But taking a month vaca­tion and eating fresh foods does NOT cure our thy­roid disease. So time will tell what went on with you! So now, all we can do is hope eter­nal that Oprah will get on the pla­net that the rest of us live on, and help us to spread the word as to why millions of thy­roid patients have been suf­fe­ring and about a far bet­ter treat­ment. If you can con­ti­nue to have per­sis­tence, you can email her here. STOP the thy­roid madness! 

P.S. Go here to read thy­roid patient Anna’s humo­rous expe­rience with follo­wing the same kind of advice given on Oprah’s show.