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FDA’s Safe Use Initiative – think they will listen to our cries about T4-only meds?

EarplugsAs a thy­roid patient who was pro­foundly har­med by the use of Synth­roid and Levoxyl in the treat­ment of my hypothy­roi­dism, and as an acti­vist who sees this same harm­ful truth with poten­tially millions of other patients, I find this recent news interesting.

But you gotta won­der if they will be wea­ring noise reduc­tion head­sets and ear plugs…or not…when it comes to the scan­dal of synthe­tic T4-only medi­ca­tions.  Will they?

Just today, the U.S. Depart­ment of Health and Human Ser­vi­ces and the Food and Drug Admi­nis­tra­tion (FDA) announ­ced the Safe Use Ini­tia­tive, “a pro­gram aimed at redu­cing the like­lihood of pre­ven­ta­ble harm from medi­ca­tion use”.

Sta­te­ments I glea­ned from this ini­tia­tive include:

1. Today, tens of millions of peo­ple in the Uni­ted Sta­tes depend on presc­rip­tion and over‐the‐counter (OTC) medi­ca­tions to sus­tain their health — as many as 3 billion presc­rip­tions are writ­ten annually. Too many peo­ple, howe­ver, suf­fer unne­ces­sary inju­ries, even death, as a result of pre­ven­ta­ble medi­ca­tion errors or misuse.

2. Although FDA and many other sta­kehol­ders have been wor­king to improve how the health­care sys­tem mana­ges medi­ca­tion risks in the Uni­ted Sta­tes, it is widely recog­ni­zed that more needs to be done to pro­tect the public from pre­ven­ta­ble harm from medi­ca­tion use.

3. Medi­ca­tions offer great bene­fit, but they come with risks. Whe­ne­ver medi­ca­tions are not used opti­mally, risks of harm can inc­rease significantly.

4. FDA pro­po­ses to iden­tify, using a trans­pa­rent and colla­bo­ra­tive pro­cess, spe­ci­fic can­di­date cases (e.g., drugs, drug clas­ses, and/or the­ra­peu­tic situa­tions) that are asso­cia­ted with sig­ni­fi­cant amounts of pre­ven­ta­ble harm.

This ini­tia­tive is actually far broa­der than what I glea­ned above, and also invol­ves self-abuse, expo­sure of dan­ge­rous medi­ca­tions to chil­dren, dire side effects, and more. Five areas are also spe­ci­fi­cally tar­ge­ted:  Con­su­mer medi­ca­tion infor­ma­tion (CMI), Medi­ca­tion dosing devi­ces, Ace­ta­mi­nophen toxi­city, Alcohol-based sur­gi­cal preps, and Medi­ca­tions in vials. You can read more in the fact sheet.

But if the FDA is going to do their job with this ini­tia­tive, or do their job ove­rall, you have to won­der if they will lis­ten to and inc­lude the pro­blems asso­cia­ted with being trea­ted with a T4-only medi­ca­tion as expe­rien­ced by millions of patients world­wide. Con­ti­nuing symp­toms of hypothy­roi­dism while on this ina­de­quate treat­ment is wides­pread and dama­ging for many, cau­sing hands reaching deep in poc­kets to pay for nume­rous doc­tors appoint­ments, besi­des anti­de­pres­sants, anti-anxiety meds, blood pres­sure meds, sta­tins, cor­ti­sol meds for adre­nal fati­gue, and other medi­ca­tions which we would have never nee­ded, and would have been pre­ven­ta­ble, if we had been on natu­ral desic­ca­ted thy­roid like Natu­reth­roid or Westh­roid in the first place.

Many patients on thy­ro­xine, T4-only medi­ca­tions will also report actual hos­pi­tal visits due to the side effects of a poor treatment.

In other words, thy­ro­xine aka levothy­ro­xine aka T4 treat­ment has been an unsafe and harm­ful treat­ment, cau­sing millions to suf­fer unne­ces­sary inju­ries and side effects for over 50 years of its use­less and popu­lar use.  It fits the Safe Use Ini­tia­tive. Or at the very least, it calls for the FDA to lis­ten to patient expe­rience with this lousy choice to treat hypothy­roi­dism.

Lis­ten to us, FDA. Lis­ten and be wise.

P.S. See the blog post below about a gene­tic rea­son why so many do lousy on T4.

*Want to be infor­med of these ‘fringe web­site’ blog posts?  :lol: 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 due to demand being grea­ter than supply? Go here.

The intrusion of reality about levothyroxine and depression

depressiont4I’ve been peru­sing com­ments in res­ponse to the UK’s Royal College of Phy­si­cians blun­de­ring and dark-age-constructed Diag­no­sis and treat­ment of pri­mary hypothy­roi­dism.  And though all com­ments are quite good and worth your read, I was struck by the com­ment tit­led May Rea­lity Intrude? by a man named Char­les.

Char­les explains that in 1999, his 67-year-old wife had RAI (radioac­tive iodine) and was then put on levothy­ro­xine, a T4-only medi­ca­tion (aka Synth­roid, Levoxyl, Eltro­xin, Oro­xine, levothy­ro­xine, et al).  And not long after, she com­plai­ned of having depression. 

He had an idea why after rea­ding the New England Jour­nal of Medi­cine about T3, and pro­cee­ded to buy her Armour off the inter­net.  Without her kno­wing, he switched medi­ca­tions. Lo and behold, he sta­tes “she promptly retur­ned to her usual sunny dis­po­si­tion”. Her phy­si­cian knew nothing of the switch either, and found nothing to be con­cer­ned about in her.

Char­les then explai­ned how, at age 74 in 2007, she was near death thanks to an ulcer bleed.  And to con­ti­nue trea­ting her hypothy­roi­dism, the hos­pi­tal gave her levothy­ro­xine all over again.  Back came her depres­sion and a fee­ling of wan­ting to go home and die. 

So Char­les brought her Armour to the hos­pi­tal, and though her phy­si­cal state was depres­sing enough, her sunny dis­po­si­tion retur­ned.  And that happy spi­rit while still on Armour con­ti­nues today after a full reco­very.

And Char­les pon­de­red. If his wife had been in a NHS (Natio­nal Health Ser­vice) hos­pi­tal under the care of a so-called thy­roid spe­cia­list of the NHS, would she have fai­led to obtain T3 and ins­tead, sent to a psychia­trist as if her depres­sion had nothing to do with her levothy­ro­xine trea­ted hypothy­roi­dism – the very treat­ment that the Royal College of Phy­si­cians has a dog­ma­tic love affair with?

He then conc­lu­des: My wife’s depres­sion was obvious. Since she is equip­ped with much the same assort­ment of body parts and asso­cia­ted phy­sio­logy as others, is it not likely that many levothyroxine-treated patients suf­fer from less-noticeable depression? 

Well Char­les, most any thy­roid patient who deci­des to res­pond to this will tell you une­qui­va­cably YES, YES, YES.  Because there’s no research, study or direc­tive that is more pro­found and telling than the actual EXPERIENCE of patients all over the world with T4 treat­ment and depression…besides a slew of other side effects of con­ti­nuing hypothy­roi­dism on T4-only meds.

Did you have depres­sion on a T4 med? Tell us about your expe­rience in the Com­ments sec­tion of this post.

*Want to be infor­med of these blogs? Curious what’s on Janie’s mind? Use the Noti­fi­ca­tions on the lower left of the links.

*Scroll down to the June 2nd post and report your expe­rience on the newly for­mu­la­ted Armour. It’s not a happy pic­ture.

UK celebrities with thyroid cancer or disease

clareblading1Thy­roid pro­blems have become rampant.

And it’s not just in the US with indi­vi­duals like Oprah, fit­ness guru Jillian Michaels, Sex and the City’s Kim Cat­trall, George and Bar­bara Bush, Kelly Osbourne and others.  A recent article in the Daily Mail-UK high­lights the saga of  Clare Bal­ding, the BBC TV sports pre­sen­ter in the UK whose thy­roid was gladly remo­ved due to a malig­nant tumor.

Even the gal who wrote the well-written article about Clare, Pippa Jolly, reports having gone through the same remo­val 13 years pre­vious due to an extreme case of Hashi­mo­tos and a nodule pres­sing against her trachea.

But within the infor­ma­tive and hope­ful tone of the article are a few Rod­ney Dan­ger­field thuds of the con­ti­nuing SCANDAL and idiocy of a par­ti­cu­lar thy­roid treat­ment which even the most inno­cent of article wri­ters can be fooled.

Thud #1: The very first sen­tence of the article says: Some good news for Clare Bal­ding, the BBC TV sports pre­sen­ter, is that her recent ope­ra­tion to remove her can­ce­rous thy­roid gland — a thy­roi­dec­tomy — should be the end of the matter.

End of the mat­ter? Only if she had been put on desic­ca­ted thy­roid like Natu­reth­roid, et al. Because it appears she’s on the delight­fully enchan­ting synthe­tic “thy­ro­xine”, the dar­ling of most UK doc­tors and which ser­ves to leave almost ever­yone with their own brand and inten­sity of con­ti­nuing hypothy­roid symp­toms.  You can lis­ten to my audio here about T4.

Thud #2: Diag­nos­tic rates are on the inc­rease, says Pro­fes­sor Mon­son, as thy­roid tests are now done rou­ti­nely at GP sur­ge­ries. ‘As a result there is a higher detec­tion rate and the disease can be tac­kled ear­lier and if neces­sary follo­wed up by surgery.

Right. Those inc­rea­sing diag­nos­tic rates, some which are based on the lousy TSH lab test, are ove­rri­dingly catching someone’s hypothy­roid state years after it star­ted, which lea­ves a cer­tain per­cen­tage with the misery of adre­nal insuf­fi­ciency and host of other pro­blems from being undiag­no­sed so long.  And if one is trea­ted after sur­gery based on the same holy TSH, you will only con­ti­nue to have your brand of con­ti­nuing symp­toms. You can lis­ten to my audio on the TSH here.

Thud #3: If the thy­roid is remo­ved or not func­tio­ning pro­perly, thy­ro­xine will need to be taken in drug form for life. 

You and millions of others have been hood­win­ked into thin­king it’s thy­ro­xine you will need the rest of your life, aka Eltro­xine, Synth­roid, or levothy­ro­xine,  et al.  But those T4 meds force you to depend on con­ver­sion alone, a pro­cess not well done in many, and you miss out on what natu­ral desic­ca­ted thy­roid would be giving you as a much wiser treat­ment–exactly what your own thy­roid gives: direct T4, T3, T2, T1 and cal­ci­to­nin. Or even at the VERY least, giving your­self synthe­tic T4 with synthe­tic T3.

Thud #4: Now I have to have my hor­mone levels chec­ked every three months and make sure I take my medi­ca­tion, but other­wise I feel fine. 

I com­ple­tely believe Pippa when she says she feels fine. But I want to warn her:  some CAN feel fine on a T4-only medi­ca­tion, but even­tually and espe­cially as she ages,  she’s going to have to watch out for those pesky little demons of being on an infe­rior, ina­de­quate medi­ca­tion, which can inc­lude rising cho­les­te­rol, chro­nic low-grade depres­sion, rising high blood pres­sure, or a host of other symp­toms which are indi­vi­dual to each per­son on thyroxine.

Here’s hoping Clare and Pippa join the gro­wing body of patients all over the world whose lives are being chan­ged thanks to natu­ral desic­ca­ted thyroid.

*Want to be infor­med of these blog posts? Curious what I’m ran­ting about now? Use the Noti­fi­ca­tions on the lower left of the links. 

I have a dream

As Susan Boyle of the UK had a dream which came true, I too wish from the dee­pest place in my heart that some­day soon, SOMEONE from the mass media will FINALLY get smart and do a wide-reaching story for the hun­dreds of millions who are still on T4 meds like Syth­roid, Levoxyl, Levothy­ro­xine, Eltro­xin, Oroxine…and who have depres­sion or a myriad of other lin­ge­ring symp­toms of a sucky, laugha­ble and sha­me­ful treat­ment.  This video ins­pi­res me today just as it did a few weeks ago.  Enjoy and dream with me. http://www.youtube.com/watch?v=bFzS0wgwyW4&annotation_id=annotation_179773&feature=iv :)

Janie

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

*See below on how being on T4 meds can affect your liver. And below that – why I’m han­ding my pro­mise ring back to Forest Phar­ma­ceu­ti­cals.

My mother had serious long-term depression. Can you guess why?

depression1 When I  was ten years old, my mother had elec­tric shock treatment.

The memory stands out in my mind like a bea­con. And when my Dad brought her home, he took me aside and explai­ned that my mama was not going to remem­ber where things are for awhile, and we’d have to help her. That was espe­cially true with the 4-legged sewing basket.

She even­tually regai­ned her memory. But she was never again the same bright and quick wit­ted mother I used to have when I was younger.

Why was shock treat­ment done?  To coun­ter her mys­te­rious ongoing and disa­bling depres­sion.  And this was her last option.

It didn’t work.

She lived on anti-depressants, spe­ci­fi­cally a high dose of Ela­vil, the rest of her com­pro­mi­sed life.

And more than 40 years later, about a year after her death, a change in my own life with Armour hel­ped me rea­lize why she had to be depen­dent on an anti-depressant for so many years:  Synth­roid.  My mother was on Synth­roid almost her entire adult life — a medi­ca­tion, along with Levoxyl, Levothy­ro­xine, Unith­roid, Eltro­xin, Leva­xin, Nor­ton, Eutro­sig  and Oro­xine, which lea­ves nearly all patients with lin­ge­ring hypothy­roid symp­toms, inc­lu­ding one of the most com­mon one:  chro­nic on-going depression.

And a large body of doc­tors all around the world just don’t get it.

What brought this memory of my mother up in my mind? Because two days ago, I chat­ted with a gal on Synth­roid.   By all appea­ran­ces, she see­med to be doing well, as some will make you think.  She said she had enough energy, wasn’t losing her hair, and felt okay. But when I pro­bed dee­per, she admit­ted that her blood pres­sure was going too high (as hap­pe­ned to my mother on a T4-only med) and she had a pro­blem with depres­sion and was on Well­bu­trin.  Bingo.

See http://biopsychiatry.com/hypothyroidism.htm which is also here: http://www.theannals.com/cgi/content/abstract/34/10/1142

Want to be infor­med of these blog posts?? Curious what’s on Janie’s mind? Use the Noti­fi­ca­tion fea­ture on the bot­tom left of the links.