synthroid 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!™

Good or inte­res­ting news is kinda slack right now.

But last week, the ombuds­man of the FDA’s  Cen­ter for Drug Eva­lua­tion and Research (CDER), came out with their 2009 report that I found inte­res­ting. The Ombuds­man are those who receive and impar­tially look at any com­mu­ni­ca­tions from patients to the FDA about medications.

On the fourth page, you find this under the hea­ding Drug Shor­ta­ges: Desic­ca­ted Natu­ral Thy­roid does not have FDA appro­val and it’s avai­la­bi­lity became quite limi­ted in 2009. Many con­su­mers com­plai­ned to the ombuds­man because of their pre­fe­rence of desic­ca­ted natu­ral thy­roid as thy­roid repla­ce­ment medi­ca­tion over the FDA appro­ved synthe­tic versions.

Of course, the above gives a poten­tially false impres­sion that the shor­ta­ges were due to the lack of FDA appro­val – and rea­sons for this stu­pi­dity con­cer­ning “FDA-approval” are explai­ned here.

To the con­trary, last years shor­ta­ges may be explai­ned by pro­duc­tion issues with the North Ame­ri­can pro­du­cer of desic­ca­ted thy­roid pow­der, as well as demand being grea­ter than supply thanks to patients fin­ding out about the supe­rio­rity of desic­ca­ted thy­roid over T4-only meds like Synth­roid.  The STTM web­site and book is wor­king, as are nume­rous good patient groups and forums!

But the above reveals that they are hea­ring thy­roid patients speak.

So with this being a somewhat silent period, wai­ting to see when the FDA will require RLC (Natu­reth­roid) to do ridi­cu­lously expen­sive cli­ni­cal trials to prove what patients have already known for 110 years–that desic­ca­ted thy­roid is safe and effec­tive–it can be a GOOD time to con­ti­nue com­mu­ni­ca­tion with the FDA. How? By repor­ting YOUR EXPERIENCE AND PROBLEMS with T4 for their 2010 report next year. i.e. it will serve to cement why so many did call to state their pre­fe­rence. Here’s how:

• Call or fax them and report what hap­pe­ned to you on T4: 1 – 800-332‑1088
• Fill out their form: http://www.fda.gov/downloads/Safety/MedWatch/DownloadForms/UCM082725.pdf and fax or mail to Med­Watch; 5600 Fishers Lane; Rock­vi­lle, MD 20852 – 9787
• Con­tact the FDA rep for your state: http://www.fda.gov/Safety/ReportaProblem/ConsumerComplaintCoordinators/default.htm

If you had depres­sion or other psycho­lo­gi­cal issues while on T4, report it.

If you have rising cho­les­te­rol, low ferri­tin, and/or low B12 because of T4, report it.

If you had dry skin or hair, diges­tive issues, or aches and pains, report them.

If the qua­lity of your life was lowe­red on T4, report it, out­line it, detail it.

If you got adre­nal stress because of being on T4, unders­core that lousy truth to them.

Well, I just can’t let this go by the way­side, says I with a cheesy grin.

When I did the lighthear­ted post, two posts below his one, about a woman who got filthy rich thanks to her old stock with Abbott Labs (the makers of Synth­roid),  it got a humo­rous and crea­tive com­ment from “Elizabeth”:

I have found a cou­ple of uses for a bottle of Synthroid:

A. Doors­top
B. Prop for DSL modem (so it won’t overheat)

Howe­ver, I do not recom­mend it to be taken inter­nally. Ever.

hahahaha.  You get a blue rib­bon for that gem, Mz. Eli­za­beth.  And I think Elizabeth’s creatively-funny reply deser­ves expan­sion and a party of fun-lovin’ con­tri­bu­tors. So now it’s your turn, fine rea­der of the STTM blog,  to list your own inno­va­tive and hila­rious ideas for that bottle of a T4-only medi­ca­tion.  Just use the Com­ment below this post and let ‘er rip.

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Below this post you’ll see infor­ma­tion on the current fai­lure of McCain’s coc­ke­yed anti-supplement bill, which if it had pas­sed, would have nega­ti­vely affec­ted every sin­gle thy­roid patient out there who is trying to undo the damage done by T4 meds and/or the inane TSH lab test.  So though we all won right now with this fai­lure, you betcha we’re going to have to keep our eyes and ears open for the money-grubbing Big Pharma to influence someone else about supplements.

A large and gro­wing body of hypothy­roid patients have found out the hard way why they have felt like patooey crap for years…or at the very least, why they had pesky lin­ge­ring symp­toms of hypothy­roi­dism:  being on Synth­roid or any other T4-only med.

And the anger many have felt about mis­sed years of our lives because of such a lousy treat­ment has also trans­la­ted to ill fee­lings towards a par­ti­cu­lar phar­ma­ceu­ti­cal: Abbott Labo­ra­to­ries. Abbott Labs has put hun­dreds of millions of dollars in what patients deem “brain­washing” of doc­tors, espe­cially Endo­dri­no­lo­gists, about Synth­roid for years.

But I recently found a little news piece, in the form of the follo­wing video, which at least puts just a slight posi­tive note to the term “Abbott Labo­ra­to­ries”, even if the name con­jurs up a bit of nau­sea in the guts of infor­med thy­roid patients:   http://www.youtube.com/watch?v=O8o-e-iLsUM Hope you enjoy the irony of it the way I did.  lol. Her name was Grace Gro­ner, the sec­ret Millionaire.

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Get­ting older and beco­ming hypothy­roid: Below this post, you’ll see infor­ma­tion that can affect your parents, rela­ti­ves, spou­ses and friends and how they may face the same run-around we have all had to deal with — the lousy TSH lab test, being put on all sorts of band-aid drugs like sta­tins, anti-depressants, blood pres­sure meds and more, or being put on a T4 med like Synth­roid.  Go here.

FDA and shor­ta­ges: I also men­tion above about a recent sta­te­ment by the FDA:  Forest reports manu­fac­tu­ring issues invol­ving the raw mate­rial and RLC reports inc­rea­sed demand. FDA has not orde­red Forest or RLC to remove these thy­roid (desic­ca­ted) tablets from the mar­ket. A few patients are sus­pi­cious enough of the FDA to feel it means nothing.  Others, and I am one, have honestly felt like we simply had a shor­tage of desic­ca­ted thy­roid, not a cons­pi­racy by the FDA to remove it.  So I found that sta­te­ment con­fir­ming, even if there can be more to the story. But time will tell.

Natu­reth­roid: Here you can read infor­ma­tion about this med retur­ning to phar­ma­cies around the country, and what might have chan­ged in the tablets. Once again, phar­ma­ceu­ti­cals are not telling us what is going on ahead of time, and it’s aggra­va­ting when we dis­co­ver chan­ges in our medi­ca­tions. Thy­roid patients do not care to be trea­ted like buf­foons. I sus­pect that phar­ma­ceu­ti­cals are gui­ded to say so little because of legal advice. It’s still aggravating.

Why do I rarely men­tion Armour any­more? Because it doesn’t seem worth my time since it was refor­mu­la­ted. Too many patients con­ti­nue to report lin­ge­ring symp­toms, even occu­rring months after they thought they were doing great on it.  And too many report that after they switched to Erfa’s “Thy­roid”, Natu­reth­roid or com­poun­ded with aci­dolpho­lus as a filler,  they saw a reso­lu­tion of those lin­ge­ring symptoms.

Another rea­son to improve your Vit. D levels: Research shows that low levels of Vit. D in your blood can result in inc­rea­sed fat depo­sits around your waist and other areas.  From the Dia­be­tes Jour­nal.