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Seve­ral years ago, a large per­cen­tage of thy­roid patients on yahoo groups like NTH were figu­ring out that they had adre­nal fati­gue, aka low cor­ti­sol, from years of adre­nals wor­king over­time due to the ina­de­quate TSH lab test, or being on the lousy T4-only medi­ca­tions like Synth­roid, Levoxyl, levothy­ro­xine, Eltro­xin, etc.

Not only does low cor­ti­sol keep desic­ca­ted thy­roid from wor­king well, it also cau­ses all sorts of angst with para­noia, depres­sion, anxiety, easy anger, sen­si­ti­vity to light and/or sounds, rec­lu­si­ve­ness, sleep issues and more.

First, patients dis­co­ve­red the impor­tance of using the 24 hour adre­nal saliva test rather than blood or urine. When low cor­ti­sol was con­fir­med, the treat­ment was using cor­ti­sol, aka hydro­cor­ti­sone, to give them­sel­ves back what their adre­nals were not, to allow thy­roid hor­mo­nes to reach the cells, and to give the poo­ped out adre­nals a rest.

And suc­cess was achie­ved! When all other issues were dis­co­ve­red and trea­ted, patients were finally able to heal their adre­nals with cor­ti­sol use, wean off, and be suc­cess­ful in their con­ti­nued treat­ment with desic­ca­ted thy­roid! That suc­cess con­ti­nues today!

Yet in spite of clear suc­cess in the treat­ment of low cor­ti­sol with sup­ple­men­tal cor­ti­sol in the correct amount for each indi­vi­dual (which can range from 15 to 40 mg gene­rally – men often need the higher end), as well as exce­llent books on the sub­ject by Wil­son, Peat­field, Jef­fries and the STTM book, patients like RD below still encoun­ter doc­tors who fill their minds with all sorts of fear and warnings:

I bought your book and later on I dis­co­ve­red your web­site which are both great. They are a superb source of infor­ma­tion and sup­port for thy­roid and adre­nal fati­gue suf­fe­rers. Thank you so much!

Per­so­nally I got adre­nal fati­gue by a sus­tai­ned lack of sleep for seve­ral years (crying babies).  I found a doc­tor who presc­ri­bed Hydro­cor­ti­sone (17.5 mg/day, 5 – 5-5 – 2.5), Flu­dro­cor­ti­sone, DHEA and Tes­tos­te­rone. Symp­toms disap­pea­red in about 2 weeks.

A first attempt to wean off after 6 months made some serious symp­toms reap­pear very quickly, so I retur­ned to the ori­gi­nal dose.

It is very stress­ful that many esta­blished doc­tors (our family doc­tor, and my wife’s thyroid-endocrinologist) are sca­ring me like hell that I am taking HC. They are saying I am des­tro­ying my body and I will never suc­ceed in wea­ning off HC.

My wife is a T4-only thyroid-patient with low-cortisol symp­toms. She also has been sca­red about des­si­ca­ted thy­roid and HC. Rea­ding your book I was howe­ver con­vin­ced she could bene­fit a lot from a bet­ter treatment…

Keep up the good work, as patients we are really left alone in the dark by our doctors…

And unfor­tu­na­tely, it’s true. Thy­roid and adre­nal patients are left in the dark by many doc­tors about a variety of issues rela­ted to bet­ter thy­roid treat­ment, adre­nal issues, low ferri­tin, and more.  So here’s where you can read more, and in turn, take this impor­tant infor­ma­tion into your doc­tors offices:

• All about the pro­blem of adre­nal fatigue
• How to treat
• Symp­toms of having an adre­nal problem
• The STTM book, which not only has more detail, but can be taken right into the doctor’s office
• Talk to other patients, inc­lu­ding a group tar­ge­ted for adre­nal fatigue

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If you mis­sed the exce­llent Part 2 with researcher Dr. John C. Lowe last Thurs­day eve­nings, you can lis­ten to the recor­ding, as well as sign up to be a Follo­wer of the Thy­roid Patient Com­mu­nity Call, here.

There was a time when I thought being hypo without a thy­roid was really no dif­fe­rent than being hypo with one.  Hypo is hypo.

But I was wrong. There really is a dif­fe­rence in our jour­neys – even if we both end up with hypothy­roi­dism — and four strong ones:

1. It’s no pic­nic to lose one’s thy­roid. Sur­gi­cal remo­val, called a thy­roi­dec­tomy,  can come with neck sore­ness, loss of one’s voice, and other com­pli­ca­tions. inc­lu­ding the loss of parathy­roids.  Treat­ment with RAI, or Iodine 1 – 131 to kill the thy­roid, has it’s own life­long side effects, inc­lu­ding gas­troin­tes­ti­nal issues, paro­tid sali­vary gland pro­blems, and more.  A good web­site about the con­tro­versy of RAI is atomicwomen.org.
2. The stress of sur­gery and/or RAI can do a num­ber on one’s adre­nals. I sus­pect that there is a high per­cen­tage of those who had sur­gery and/or RAI who also have adre­nal fati­gue with it’s night­ma­rish side effects, whether simply from the phy­si­cal stress of remo­val and/or treat­ment, or having a Synth­roid, T4-only obses­sed doc­tor.  Being on T4 is the num­ber one pre­dic­tor of adre­nal fatigue.
3. Some have a uni­que anguish about their vul­ne­ra­bi­lity. No one can live without a thy­roid.  And that thought with the abso­lute life­long depen­dency on thy­roid meds is not a com­for­ta­ble state.
4. Life long regret can be huge. Many patients came to rea­lize, after remo­val, that they may not have nee­ded the remo­val at all if they had known about the fallacy of the TSH lab test, or the idiocy of T4-only meds, or poten­tial bene­fits of iodine, or natu­ral desic­ca­ted thy­roid like Natu­reth­roid, com­poun­ded, or Erfa Thyroid.

Read the latest per­so­nal and gut-wrenching blog post by thy­roid can­cer Stepha­nie Buist, who is thy­roid­less after treat­ment for thy­roid can­cer nearly 10 years ago.  Also see the Talk to Others link below to find the Thy­roid­less yahoo group.

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Curious what’s going on with Natu­reth­roid or Westh­roid pro­duc­tion and avai­la­bi­lity? RLC Labs has a Patient Infor­ma­tion Line you can always call for the latest infor­ma­tion on Natu­reth­roid and Westh­roid avai­la­bi­lity: 877 – 600-4752.

Want to write a post for the STTM blog?? Begin­ning in 2010, I will be revie­wing and accep­ting “thy­roid patient guest posts” on the STTM blog in bet­ween my own. You can read about it here: www.stopthethyroidmadness.com/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!