stop the thyroid madness tags

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.

The follo­wing guest blog post is writ­ten by Amy McMu­llen, who had undiag­no­sed & symp­to­ma­tic hypothy­roi­dism for 20 years due to the sole use of the TSH, resul­ting in mul­ti­ple health problems. She is now trea­ting per the gui­de­li­nes on STTM inc­lu­ding T3 for thy­roid hor­mone resis­tance, adre­nal sup­port, and desic­ca­ted thyroid.

I found her story below as an under­co­ver advo­cate fas­ci­na­ting,  and think Amy is caring and com­mit­ted,  in spite of severe res­tric­tions! Bless you, Amy.

I spend an inor­di­nate amount of time these days con­tri­bu­ting to a well-known online thy­roid disor­ders forum I’ll call “Thy­roid Health Forum” (not its real name).

It’s a tricky forum with dra­co­nian rules: they don’t allow you to post any links to resour­ces, talk about where you get your online labs done, inc­lude quo­tes from stu­dies, or post any names of thy­roid advo­ca­tes. You can’t use a user­name you’ve used on any other forums and you can’t men­tion using their per­so­nal mes­sa­ging system.

I’ve recei­ved a few “infrac­tions” from the ever-vigilant board “admi­nis­tra­tors” and “mode­ra­tors” (never could color inside the lines, I guess) and have been war­ned to never, under any cir­cums­tan­ces, use the words “Stop the Thy­roid Mad­ness” or any refe­ren­ces to this web­site or book in my posts.

At more than one point I was ready to walk away and just give up on it.  How can you share your expe­rien­ces when there were so many rules that see­med desig­ned to inhi­bit a free flow of infor­ma­tion, to the point of not being allo­wed to men­tion the title of a good book by name or type in the word Google?

But I would read the follo­wing posts sub­mit­ted by des­pe­rate peo­ple and this would keep me coming back to try, somehow, to help:

• “Hi, my doc­tor says my labs are all nor­mal but I’ve got so many symp­toms, I can hardly function…”
• “My doc­tor says that free T3 and free T4 tes­ting is not use­ful, that my TSH is nor­mal and that unless my TSH is high he won’t order any anti­body tests…”
• “My doc­tor says that my TSH is too low and wants me to cut back on my thy­roid hor­mo­nes, but I know I will start fee­ling bad if I do this… Help!”
• “I am taking Synth­roid but I feel terri­ble and my hair is falling out and now my doc wants me to take an antidepressant…”

You see, I was in this very same boat for far too many years. About 20 years back I star­ted noti­cing symp­toms:  fati­gue, depres­sion, mens­trual irre­gu­la­ri­ties, and dizzy spells. I went to see my doc who did the usual TSH test and when it came back “nor­mal”, presc­ri­bed anti­de­pres­sants. The anti­de­pres­sants did help, but my mens­trual pro­blems inten­si­fied and other symp­toms inc­rea­sed until I finally under­went a hys­te­rec­tomy for dys­func­tio­nal ute­rine blee­ding. Shortly the­reaf­ter, I collap­sed with heart irre­gu­la­ri­ties and auto­no­mic ner­vous sys­tem dys­func­tion in the fall of 2006.

I went to over 10 dif­fe­rent spe­cia­lists spen­ding thou­sands of dollars for medi­cal bills with no real ans­wers – just a lot of shrug­ged shoul­ders and a fibrom­yal­gia diagnosis.

It wasn’t until my mother was hos­pi­ta­li­zed and rou­tine blood tes­ting came back with a TSH of over 6 that I loo­ked again at my own thy­roid. My TSH was never above 3. I had one free T4 test done follo­wing my ini­tial collapse but, again, all tests were flag­ged “nor­mal” and thy­roid was pas­sed over once again.

But a search about TSH lab ran­ges led me to Mary Shomon’s About.com artic­les, and while she see­med to be stuck on the idea that 3 was an accep­ta­ble num­ber for the top of range for TSH, based enti­rely on the Ame­ri­can Asso­cia­tion of Cli­ni­cal Endoc­ri­no­lo­gists recom­men­da­tions, I finally found the Stop the Thy­roid Mad­ness site and lear­ned otherwise.

It was here that I lear­ned about other tes­ting like free T3, free T4, thy­roid anti­bo­dies, vita­min and ferri­tin levels and, very impor­tantly, that the TSH should be the LAST test done for diag­no­sing hypothy­roi­dism ins­tead of the ONLY test. I finally caught on to how the medi­cal esta­blish­ment has fai­led mise­rably to ade­qua­tely diag­nose and treat hypothy­roi­dism. I felt both inc­re­dibly empo­we­red and very, very angry.

I quickly del­ved into the thy­roid forums to share what I’d lear­ned and to learn from others. The first forum I found was the afo­re­men­tio­ned  “Thy­roid Health Forum”, and since this is one of the best-known, it is where many of the new­bies, like me, find them­sel­ves. There were both natu­ral and synthe­tic hor­mone pro­po­nents on the board and the advice ran­ged from very good to quite bad. I soon found there were bet­ter forums like Realthy­roidhelp and the natu­ral thy­roid hor­mone Yahoo groups that had really smart peo­ple who were happy to share resour­ces and infor­ma­tion that was truly use­ful. I spent a lot of time on these and lear­ned a great deal.

But for some rea­son I couldn’t seem to leave the “Thy­roid Health Forum”. The peo­ple who stum­bled on there see­med so lost and I felt com­pe­lled to impart what I had lear­ned to them. I would offer alter­na­ti­ves to the synthe­tics and explain why natu­ral desic­ca­ted thy­roid (NDT) was a supe­rior treat­ment option and, more impor­tantly, that they did have an option for their treat­ment, des­pite what their doc­tor told them. I’d relay what I had lear­ned from other boards about access to NDT during the shortages.

When I figu­red out I had adre­nal fati­gue and later thy­roid hor­mone resis­tance as a result of being undiag­no­sed for so long, I star­ted rela­ying infor­ma­tion about these issues to the many who were having dif­fi­cul­ties get­ting opti­mi­zed on their hor­mone repla­ce­ment the­rapy. I found it to be both rewar­ding and enor­mously edu­ca­ting for myself as I would spend time researching ques­tions that were asked about sup­ple­ments, lab tests, and stu­dies. I was not allo­wed to post links so had to sum­ma­rize things I had lear­ned and this taught me even more. The main mes­sa­ges I pushed were (and are):  get the right labs done, learn how to inter­pret them correctly, be your own advo­cate, know your treat­ment options, and don’t impli­citly trust doctors.

I will con­ti­nue to con­tri­bute what I’ve lear­ned to the “Thy­roid Health Forum”. So far I’ve mana­ged to fly under the radar and play, howe­ver grud­gingly, by their rules. I figure if I can get just one or two peo­ple to ques­tion the pre­sent thy­roid cli­ni­cal gui­de­li­nes, as writ­ten by our friends at big pharma, I’ll be more than satis­fied. I actually believe that by get­ting good infor­ma­tion out there to as many suf­fe­rers as pos­si­ble, we may create a grounds­well of peo­ple who will no lon­ger accept being dis­mis­sed as depres­sed com­plai­ners by their health­care pro­vi­ders. And this is one more way we can help enact real change to the currently abys­mal medi­cal prac­tice of thy­roid diag­no­sis and treat­ment. Well worth it in my book!

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Latest news from RLC: Ship­ments of Natu­reth­roid are begin­ning Mon­day, January 4^th and the first two weeks with bac­kor­ders going out ASAP.  Medco should have some by the end of January. Their Patient Infor­ma­tion Line: Naturethroid/Westhroid: 877 – 600-4752

Thy­roid  patient guest posts can be read about here: /writing-a-guest-blog-post-on-sttm/

Want to honor someone who has hel­ped you?? See the blog post below and thank someone.

NOTE: if you were recei­ving email noti­fi­ca­tions about these posts,  the com­pany doing them is out of busi­ness. Ins­tead, use an RSS Feed.

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.

And now that I have your atten­tion, here’s the ans­wer straight from the mouth of Kenny Soe­joto, Chief Ope­ra­ting Offi­cer of the only North Ame­ri­can maker of desic­ca­ted por­cine natu­ral thy­roid pow­der (Ame­ri­can Labo­ra­to­ries): a firm NO!

“We have amply supply and so do the dis­tri­bu­tors for com­poun­ding phar­ma­cists”, unders­co­res Soe­joto when I chat­ted with him today.

He also added in res­ponse to the recent shor­ta­ges:  “We didn’t spare an expense to push it along”.  i.e  “Ame­ri­can Labo­ra­to­ries have caught up with all bac­kor­ders, with the excep­tion of one major com­pany which has tight spe­ci­fi­ca­tions, but they should be caught up by the first quar­ter in 2010″, explai­ned Soejoto.

So what about spe­ci­fic rumors we keep hearing??

1. My com­poun­ding phar­macy said they weren’t able to get it. Kenny explai­ned that a small com­poun­ding phar­macy often can’t afford the mini­mum order that Ame­ri­can Labo­ra­to­ries requi­res, nor does the sma­ller phar­macy want that much, which is an 110 lb drum of pow­der.  So, says Soe­joto, they need to con­tact their dis­tri­bu­tor, who is the middle man bet­ween a com­poun­ding phar­macy and Ame­ri­can Labo­ra­to­ries. “The dis­tri­bu­tor for com­poun­ding phar­ma­cies, ” explai­ned Kenny, “will buy the lar­ger amounts, make sma­ller pac­kets, and then sell those to the com­poun­ding pharmacies”.
2. Ame­ri­can Labo­ra­to­ries can’t be the only North Ame­ri­can makers of pow­de­red thy­roid because my com­poun­der told me a dif­fe­rent name. The dif­fe­rent name you heard is the middle man men­tio­ned above – a dis­tri­bu­tor for the thy­roid pow­der to the com­poun­ding phar­macy. But that dis­tri­bu­tor got their supply from Ame­ri­can Laboratories.
3. My regu­lar phar­macy said there is a supply issue for the brand I wan­ted. Again, Kenny explains there is no supply issue – they have plenty. Any phar­ma­ceu­ti­cal com­pany that makes desic­ca­ted thy­roid has to have ongoing cre­dit worthi­ness and docu­men­ta­tion before AI can sell to them. Also, we are simply expe­rien­cing con­ti­nued demand being grea­ter than supply, and it can take time to catch up.  i.e. there may be more to the story than you hear under any com­ment about a supply issue problem.

In conc­lu­sion, Kenny Soe­joto said they simply got into trou­ble from the growth of inte­rest in desic­ca­ted thy­roid the past few years, and they are much bet­ter pre­pa­red. Even Europe is inqui­ring more about it, he said. And my res­ponse to him?? Get ready, because you are doing millions of poten­tial thy­roid patients a HUGE favor by making it,  and we’re going to con­ti­nue to spread the world about natu­ral desic­ca­ted thy­roid. 

Check out posts below about other impor­tant issues, inc­lu­ding more from Erfa, plus the pro­blem of cellu­lose in com­poun­ded and regu­lar desic­ca­ted thyroid.

*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!

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!