thyroid patients tags

It’s a con­ti­nuing tra­vesty, and you see it in patient groups.

i.e. many patients still find them­sel­ves sick and disa­bled, stum­bling mise­rably from one unin­for­med doc­tor to another…in spite of the won­ders of natu­ral desic­ca­ted thy­roid, the tes­ti­mony of chan­ged lives, the edu­ca­tion of patients thanks to the STTM web­site & book, and a small but gro­wing body of wise doc­tors who seem to be “get­ting it”,

So what’s the pro­blem?? It lays with our doc­tors and the entire medi­cal pro­fes­sion.

1. Heavy-handed con­trol over your medi­ca­tion: You go to pick up your presc­rip­tion, and find your medi­ca­tion has been lowe­red by your doc­tor without your agree­ment or know­ledge, as hap­pe­ned to Terry here (scroll down to find her post).
2. Igno­rance about adre­nal fati­gue and treat­ment: You clearly have an adre­nal pro­blem, and one doc­tor dis­mis­ses its exis­tence, another doc­tor poo-poos the saliva test, another doc­tor tells you cor­ti­sol sup­ple­men­ta­tion is dan­ge­rous, another doc­tor thrusts all his her­bal sup­ple­ments at you, another doc­tor thinks that 5 or 10 mg cor­ti­sol is enough…and on and on and on.
3. Dis­mis­sing the Ferri­tin test: You want to know what your ferri­tin is, but the doctor’s nurse unders­co­res that they’ve already chec­ked your iron levels, so there’s no need for more testing.
4. Dis­mis­sing you: You are wise thanks to rea­ding, researching and living in your own body, yet your doc­tor calls you a pro­ble­ma­tic patient on your charts, dis­mis­ses you, or gets angry.
5. RT3 huh? You have strong sus­pi­cions that your Reverse T3 is too high thanks to adre­nal fati­gue, low ferri­tin, undiag­no­sed glu­ten issues, or other rea­sons, yet this doc­tor refu­ses to test you, that doc­tor says an RT3 excess is rare.
6. Look at me! Look at me! You make an appoint­ment with that great doc who has a fabu­lous website/book and who shouts that he uses desic­ca­ted thy­roid with a big smile…yet any or all of the above and below occurs with him/her or his “trai­ned” associates.
7. Con­ti­nued worship of the TSH lab test:  Too many doc­tors still think the TSH lab test is from God Almighty. So when you finally start to feel well on desic­ca­ted thy­roid with a TSH at zero or below…WHAM…you must lower your meds because you are somehow “hyper” in spite of no symp­toms to match.
8. Phar­ma­ceu­ti­cal addicts: You men­tion your lin­ge­ring hypothy­roid symp­toms, and you are ban­dai­ded with anti-depressants, anti-anxietal meds, sta­tins, BP pills, pain tablets, acid reflux pills, cal­cium for your thin­ning bones…instead of unders­tand that these are ALL side effects of poor treat­ment or undis­co­ve­red issues.
9. The country you live in: The des­pe­ra­tion of UK thy­roid patients is deep thanks to a thy­roid asso­cia­tion and a College of Phy­si­cians which tigh­tens the screws if a doc­tor dares to presc­ribe a life chan­ging medi­ca­tion with T3 in it.  Or just as frus­tra­ting, having a govern­ment which for­bids desic­ca­ted thy­roid to arrive to you in the mail.
10. Refor­mu­la­tions and Big Pharma apathy: Forest Labs tur­ned one of the most popu­lar and effec­tive desic­ca­ted thy­roid brand, Armour, into a pill with too much cellu­lose and too little suc­rose , cau­sing a mas­sive return of symp­toms in many, soo­ner or later. RLC also refor­mu­la­ted their Natu­reth­roid, and though some patients still do well on it, others do mise­rably, and we are left won­de­ring WHAT to take. (Thank God for Erfa’s Cana­dian “Thy­roid”, but will we be able to con­ti­nue with this fabu­lous desic­ca­ted thy­roid product?)

And there are more rea­sons you might want to bring up in the Com­ments part of this post.

So you see, it’s no won­der so MANY patients feel for­ced to self-treat, yet they are also con­dem­ned for doing so. I refuse to con­demn them for exactly the rea­sons above.  Petty. All I ask is that we all try to find a good doc, but it may be quite hard when you con­si­der all the above.

All-in-all, we still have  a way to go, baby, and espe­cially with the doc­tors we try so hard to get help from…but can’t.

P.S. Are you brave? Walk into your doctor’s office with the STTM shirt.

In case you are inte­res­ted, the follo­wing repre­sents Phase 3 of the FDA Trans­pa­rency Ini­tia­tive, which could end up bene­fi­ting thy­roid patients as we deal with the upco­ming cli­ni­cal trials for natu­ral desic­ca­ted thy­roid. The links at the bot­tom give more unders­tan­ding, as well.

For Imme­diate Release: March 12, 2010

FDA Task Force Seeks Public Com­ments on Inc­rea­sing Trans­pa­rency With Regu­la­ted Industry

As part of the final phase of its trans­pa­rency ini­tia­tive, the U.S. Food and Drug Admi­nis­tra­tion is see­king com­ment from the public and other inte­res­ted sta­kehol­ders on how the agency can inc­rease trans­pa­rency in its inte­rac­tions with regu­la­ted industry.

Pos­ted in the March 12, 2010, Fede­ral Regis­ter, the request for elec­tro­nic or writ­ten com­ments has a dead­line of April 12, 2010.

The FDA regu­la­tes pro­ducts res­pon­si­ble for about 25 per­cent of the gross natio­nal pro­duct of the Uni­ted Sta­tes and the indus­tries res­pon­si­ble for these pro­ducts. Pro­ducts regu­la­ted by the agency – bio­lo­gics and blood pro­ducts, human drugs, foods, medi­cal devi­ces, radiation-emitting devi­ces, and vete­ri­nary medi­ci­nes – are inte­gral to public health and to the U.S. economy.

The agency for­med an inter­nal Trans­pa­rency Task Force in res­ponse to the Obama Administration’s com­mit­ment to achieve “an unpre­ce­den­ted level of open­ness in Govern­ment.” The Task Force is deve­lo­ping recom­men­da­tions for making infor­ma­tion about FDA acti­vi­ties and deci­sions more use­ful, unders­tan­da­ble, and rea­dily avai­la­ble, while appro­pria­tely pro­tec­ting con­fi­den­tial information.

The Task Force held public mee­tings in June 2009 and Novem­ber 2009. Based upon input recei­ved thus far, the Trans­pa­rency Ini­tia­tive has been divi­ded into three pha­ses. The first phase, crea­ting a Web-based resource called “FDA Basics” to pro­vide infor­ma­tion on com­monly misun­ders­tood aspects of the agency, has been com­ple­ted. The second phase, impro­ving FDA’s disc­lo­sure of infor­ma­tion to the public, is under­way and the agency intends to issue draft pro­po­sals for public com­ment soon.

The request for com­ment for the third phase follows a series of lis­te­ning ses­sions with mem­bers of regu­la­ted industry in January 2010. Transc­ripts and sum­ma­ries of those lis­te­ning ses­sions are avai­la­ble at http://www.fda.gov/transparency and at http://www.regulations.gov.

For this final phase, the FDA is par­ti­cu­larly inte­res­ted in com­ments from all inte­res­ted par­ties on how the agency can make impro­ve­ments in the follo­wing areas:

• Trai­ning and edu­ca­tion for regu­la­ted industry about the FDA regu­la­tory pro­cess in gene­ral and/or about spe­ci­fic new requirements
• The gui­dance deve­lop­ment process
• Main­tai­ning open chan­nels of com­mu­ni­ca­tion with industry rou­ti­nely and during crises
• Pro­vi­ding use­ful and timely ans­wers to industry ques­tions about spe­ci­fic regu­la­tory issues

Elec­tro­nic com­ments may be sub­mit­ted to http://www.regulations.gov.  Sub­mit writ­ten com­ments to the Divi­sion of Doc­kets Mana­ge­ment (HFA – 305), Food and Drug Admi­nis­tra­tion, 5630 Fishers Lane, Room 1061, Rock­vi­lle, Md., 20852. All com­ments should be iden­ti­fied with doc­ket num­ber FDA – 2009 – N – 0247.

For more information:

• March 12, 2010 Fede­ral Regis­ter Notice
• FDA Trans­pa­rency Task Force Web Page
• FDA Basics Web Page
• FDA Trans­pa­rency blog: http://fdatransparencyblog.fda.gov/2010/03/final-phase-of-the-transparency-initiative-we-want-your-ideas.html
• How did we get to where we are with the FDA’s actions towards desic­ca­ted thy­roid today? Go here.

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.

**********************************************

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.

A press release just came out sta­ting that the U.S. Food and Drug Admi­nis­tra­tion (FDA) has “unvei­led the first phase of its Trans­pa­rency Ini­tia­tive which is desig­ned to explain agency ope­ra­tions, how it makes decisions, and the drug appro­val process.”

Of course, this doesn’t mean thy­roid patients can stop what seems like an inane deci­sion to require makers of desic­ca­ted thy­roid to “prove” , via expen­sive cli­ni­cal trials, that it’s a safe and effec­tive medi­ca­tion. RLC Labs, for exam­ple, the makers of Natu­reth­roid and Westh­roid, will be affec­ted.  Over 110 years of patient use, with 70 years by RLC, cer­tainly reveal it’s a safe and effec­tive treat­ment. But at least this trans­pa­rency ini­tia­tive will “poten­tially”  give us bet­ter infor­ma­tion about the pro­cess. We’ll see.

About the upco­ming Part 2 with Dr. Lowe (see the blog post right below this): Some folks were boo­ted off last Thurs­day and had to quickly get back on. The pro­blem is when you get back on, you may lose your abi­lity to chat.  i.e. the sys­tem stops the chat abi­lity once there are 300 indi­vi­duals already on the chat.  You can lis­ten, but you can’t chat after 300 are on.

So there are three things you can do to pre­vent being boo­ted off and having to get back on:  first, make sure you have clo­sed anything else on your com­pu­ter – i.e only Talkshoe should be up. Second, make sure no other pro­grams are run­ning in the back­ground, or will come on, like your anti-virus, and 3) ahead of time, down­load Live Pro from Talkshoe and use that. It’s more stable.

I, in turn, will be doing a stra­tegy to strengthen this call from boots.  Addi­tio­nally, if neces­sary, some who aren’t chat­ting out of the first 300 will have their option chan­ged to no-chat to allow those who came in lat­ter to do it.  It’s not per­so­nal because I don’t know who a lot of you are. It’s just sprea­ding the abi­lity into the call.

Do you take regu­lar aspi­rin? Just as we warn about swa­llo­wing your meds when you have just eaten anything with cal­cium, iron or estro­gen (they bind the thy­roid hor­mo­nes), you need to be aware that aspi­rin can have a nega­tive affect on your thy­roid levels, as well.  i.e. though it may help lower high thy­roid levels, it’s not good for your thy­roid treat­ment if you regu­larly take it.

How did we get to where we are with the FDA’s actions towards desic­ca­ted thy­roid today? Go here.

This coming Thurs­day, January 7^th, Dr. John C. Lowe DC, PLLC will be joi­ning me for the Talkshoe THYROID PATIENT COMMUNITY CALL and it’s one you don’t want to miss.

Dr. Lowe has been highly res­pec­ted by thy­roid patients for years for the exce­llent infor­ma­tion he has dis­se­mi­na­ted about bet­ter thy­roid treat­ment on his web­site drlowe.com.  In fact, he’s one of a hand­ful of doc­tors that I men­tion with gra­ti­tude in the Ack­now­led­ge­ments of the Stop the Thy­roid Mad­ness book.  His web­site and wise unders­tan­ding pla­yed an empo­we­ring and self-educating role in the early move­ment by patients for bet­ter thy­roid treat­ment with desic­ca­ted thy­roid and bet­ter labs.  You can read his own writ­ten bio­graphy here.

Mark your calen­der and set your cell phone alarm: the Com­mu­nity Call starts at 9 pm Eas­tern, 8 pm Cen­tral, 7 pm Moun­tain and 6 pm Paci­fic.  You can log on any­time within 15 minu­tes before the call starts and par­ti­ci­pate in the Chat box. That same box will be right there during the entire call.

The entire live audio chat with Janie and Dr. Lowe will come right on your com­pu­ter, so remem­ber to turn your audio up.

Addi­tio­nally, those who log in can also choose to call in and ask Dr. Lowe direct ques­tion. Don’t miss this great opportunity!

The Stop the Thy­roid Mad­ness Talkshoe page: http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc

********************
See the blog post below for a very insight­ful Guest Blog Post by Amy about her role as an Under­co­ver Thy­roid Advo­cate. Below that, you can read how I was wrong about what it was like to be thy­roid­less, and seve­ral great comments.