thyroid patient tags

Please note: Dr. Lowe is NOT an MD or DO who see’s patients and can presc­ribe. He’s a thy­roid and fibro “researcher” with good know­ledge about T3,  fibro, meta­bo­lism, sup­ple­ments etc. Many ques­tions have been coming in which are already ans­we­red on STTM, or are more tar­ge­ted to a prac­ti­cing phy­si­cian, not a researcher. FYI.

On the heels of an infor­ma­tive and won­der­ful THYROID PATIENT COMMUNITY CALL on Talkshoe last week with Dr. John C. Lowe (see posts below), we’re going to do it again this coming Thurs­day, January 14^th.  Join us for Part 2!

Dr. Lowe is a fibrom­yal­gia, thy­roid, and meta­bo­lism researcher who has always been such a cham­pion for bet­ter diag­no­sis and treat­ment in thy­roid patients. He is Editor-in-Chief of the open access jour­nal www.thyroidscience.com as well as his own www.drlowe.com

And this time, Dr. Lowe is going to spend more time ans­we­ring  your spe­ci­fic ques­tions. Check out his web­si­tes above to get an idea what his exper­tise is, which inc­lu­des the use of T3,  Hashi­mo­tos autoim­mune thy­roid disease, iodine, fibrom­yal­gia, the tyranny of the TSH lab test, good sup­ple­ments, the FDA, and more.

So here’s your chance: think of one or two ques­tions you’d like to hear him ans­wer. Please, if you have more more than two,  narrow them down to the two most impor­tant, and keep them brief.  No excep­tions. Two max only, and brief.  Then use the Com­ments below to post them.  Be sure and check out if your ques­tions have already been asked in other comments.

I’ll be collec­ting the ques­tions ahead of time and will let him pre­view them. He wants to give you his best.

TIPS ABOUT TALKSHOE: Some repor­ted being boo­ted off and having to quickly rejoin. One step that may help is to down­load the Talk Shoe Live Pro ahead of time (takes 25 minu­tes for some) and use that soft­ware during the call, since it gives you far more sta­bi­lity.  Also, make SURE you have everything else clo­sed and/or not run­ning on your com­pu­ter at the same time you are in the Talkshoe call. I will also be chat­ting with Talkshoe sup­port and will get more ideas.

Also, don’t wait until the call occurs to men­tion your ques­tion. We found it dif­fi­cult to try collec­ting them on the Chat. Ask now!!

Yes, you can also call in live during the Call, but it’s good to first let me know your ques­tion here.

And finally, at a cer­tain point of those who join (after 300 on chat), Talkshoe par­ti­ci­pants are auto­ma­ti­cally una­ble to post on the chat. You can lis­ten, but no chat­ting. So if you want to chat, join as soon as the Call opens up, which is 15 minu­tes before the actual audio begins. Times for the audio are 9 pm Eas­tern, 8 pm Cen­tral, 7 Moun­tain, and 6 pm Pacific.

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

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See the blog post below those about Lowe 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.

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

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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.

Let me tell you, there are a LOT of indi­vi­duals — those I know and those I don’t — who give their blood, sweat and tears to help thy­roid patients with feed­back and infor­ma­tion to help them feel bet­ter in their treat­ment, and with no noto­riety that I or a few others get.   i.e they do what they do without a huge or far-reaching web­site like STTM, or a well-known blog, or a popu­lar book, or other ways a few of us get well-known.

And in my mind, these indi­vi­duals deserve praise and recog­ni­tion. They are just as impor­tant in their direct one-on-one influence and help­ful­ness as those of us who gai­ned public recog­ni­tion.

Where are these peo­ple? They are those who own and/or mode­rate and/or con­tri­bute often to thy­roid forums, such as Debo­rah and her mods on Real Thy­roid Help, and Pam and others on Low Carb Friends.

For help­ful Yahoo groups, there is Linda aka Top­per of The Thy­roid Sup­port Group,  Sam and her mod Darla of the Thy­roid­less group, Vale­rie Tay­lor and her exce­llent and patient mods Diane and birrdyy of NTH Adre­nals and RT3/T3 group,  Darla, Linda, Meleese and Pat of NTH,  Jan Nathan with her Texas group plus other state groups.

There are many who volun­ta­rily hel­ped others in the last few years who aren’t as active any­more, but still deserve praise.

And there are many other indi­vi­duals who own, mode­rate, or give help­ful feed­back to patients on forums and yahoo groups I could men­tion, but I don’t know their names or am just dra­wing a dis­trac­ted holi­day blank.  I also noti­ced seve­ral thy­roid can­cer groups.

So, if you want to recog­nize an indi­vi­dual who has hel­ped you and others but is less publicly well known, use the Com­ments below and give 1) their name, 2) what group or forum if appli­ca­ble, and 3) spe­ci­fi­cally how they hel­ped you on your path in fin­ding a much bet­ter thy­roid treat­ment pro­to­col and good health.

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!

As 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.