synthroid tags

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.

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.

The year of 2009 will long be remem­be­red for two night­ma­res straight out of Twi­light Zone for thy­roid patients: 1) Armour desic­ca­ted thy­roid by Forest Labs was refor­mu­la­ted with patients glo­bally repor­ted a return of symp­toms and new frus­tra­ting ones, and 2) shor­ta­ges of all US-made natu­ral desic­ca­ted thy­roid like Armour, Natu­reth­roid and Westh­roid occu­rred, as well as no more gene­rics thanks to the FDA.

Addi­tio­nally, as I write this, Natu­reth­roid and Westh­roid by RLC Labs are still hard to get – making too slow a return on phar­macy shel­ves which may not improve until 2010. You can read details and a good sum­mary about this on about.com.

But there’s been a sil­ver lining to this situa­tion: Canada’s “Thy­roid” by Erfa.

Many patients made a switch to this desic­ca­ted thy­roid pro­duct, using online phar­macy web­si­tes and their presc­rip­tions from their doc­tors. And ove­rall, the expe­rience of patients with Erfa’s Thy­roid has been extre­mely positive.

I had a won­der­ful chat this week with Dr. Henri Knafo, the Direc­tor of Medi­cal Affairs at Erfa Canada Inc.  My first and most impor­tant ques­tion: Is there enough Thy­roid for all your patient cus­to­mers?? And I got an une­qui­vo­cal “Yes” from Dr. Knafo.  He explai­ned there are no con­cerns with run­ning out and they have plenty in stock, now and in the future. He sta­ted that if their stock gets low from sud­den demand, they can easily get more and quickly.

I also asked: Is ship­ping timely? Defi­ni­tely yes, Dr. Knafo sta­ted. But he also qua­li­fied that Erfa is over­loa­ded with orders. And though they are kee­ping up, your presc­rip­tion order can take time to pro­cess. But, he sta­ted “Be Patient. It will arrive!”

What is going on with the FDA and Erfa? He unders­co­red that the FDA is coo­pe­ra­ting com­ple­tely, and they see a good future with the FDA.  They are com­ple­tely tole­rant, said Dr. Knafo, because they seem to unders­tand the shor­ta­ges. Erfa’s Thy­roid is also com­ple­tely appro­ved and regu­la­ted by Health Canada. As far as the future and the FDA, Dr. Knafo strongly feels that once the FDA is reas­su­red about desic­ca­ted thy­roid, things will only get bet­ter for US patients with brands and avai­la­bi­lity. He feels that issues with the FDA are far more posi­tive than many thy­roid patients and lea­ders seem to get or want to see.

Do you see chan­ges towards opi­nion of desic­ca­ted thy­roid?  Defi­ni­tely, yes. Dr. Knafo recently atten­ded a Euro­pean medi­cal con­fe­rence with over 50 spe­cia­lists and he saw many doc­tors not satis­fied with Synth­roid and noti­cing the bet­ter treat­ment with desic­ca­ted thy­roid. “It’s boo­ming in Europe”, he unders­co­red about Erfa and desic­ca­ted thy­roid  “Even Endo’s are noti­cing”.  He also said that Bel­gium was expe­rien­cing a huge medi­cal trend away from T4 and towards desic­ca­ted thyroid.

Why has the cost of Erfa’s Thy­roid gone up even more than 50%?? His expla­na­tion was three-fold:  it was first a finan­cial deci­sion, since they have never made much of a pro­fit on desic­ca­ted thy­roid. Second, Health Canada requi­res a lot of expen­sive tes­ting from Erfa on pro­ducts. And third, since they buy their pow­de­red desic­ca­ted thy­roid from Europe, an inc­rease in Euros meant they nee­ded to inc­rease the price.

Any final com­ments? Dr. Knafo cla­ri­fied: Erfa has been making Thy­roid for 30 years and not only will that con­ti­nue, they will not change the for­mula. He thinks the sugar in Thy­roid is what makes absorp­tion so good, and that will con­ti­nue as an ingre­dient just as it is.  Nothing will change! To see ingre­dients of Erfa’s Thy­roid and other brands, go here.

You can read more about Erfa from my Sep­tem­ber 2^nd post.   Thank you to Dr. Knafo for being so can­did and informative!

See my post below about my mother, who lived her entire adult life under­trea­ted on T4 with depres­sion and elec­tric shock treat­ment and had no inter­net to com­pare notes. If you have a rela­tive from the past with a simi­lar story, add the story to the Comments.

*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!

The news this mor­ning about Oprah made me pause.

Yes, it’s being announ­ced today that there will be no more Oprah Win­frey Show on CBS after Fall of next year.  She’s saying goodbye. And the rumor is that she will move her talk show to The Oprah Win­frey Net­work, which repla­ces the Dis­co­very Health Chan­nel. We’ll see when she for­mally announ­ces it today on her show.

But the change sure does shine a bright spot­light on a colos­sal and com­plete fai­lure by Oprah and The Oprah Win­frey Show for hun­dreds of millions of thy­roid patients. Though she had her own bout with thy­roid disease (and may still be dea­ling with it when you con­si­der her weight issues), we all win­ced a year ago when she sta­ted that a month long Hawaiian vaca­tion and eating fresh foods with soy milk (a goi­tro­gen) were a great way to treat her thy­roid con­di­tion. Yikes.   We equally squir­med in our seats when Dr. Chris­tiane North­rup made the com­ment that our thy­roid pro­blems were due to an “energy bloc­kage in the throat region, the result of a life­time of ’swa­llo­wing’ words one is aching to say.” Dou­ble yikes.

And since then, we have watched nothing, zilch, zero from Oprah and The Opray Win­frey Show about a horren­dous 55-year medi­cal scan­dal of thy­roid treat­ment that has nega­ti­vely affec­ted the lives of hun­dreds of millions of thy­roid patients world­wide. T4-only meds like Synth­roid, the dar­ling medi­ca­tion of the medi­cal com­mu­nity for hypothy­roi­dism treat­ment, has left hun­dreds of millions sick.  The TSH lab test has equally sent us to hell.  Because we have been for­ced to live with con­ti­nuing symp­toms of hypothy­roi­dism, we’ve endu­red much more tes­ting and have been put on many other medi­ca­tions to ban­daid our con­ti­nuing symp­toms. And a majo­rity of us have had to deal with the addi­tio­nal bur­den of adre­nal fati­gue thanks to all the above.

It’s been hell, Oprah. But you never lis­te­ned.  So for me per­so­nally, I could care less what you do now. You’ve let millions of us down.

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On a far bet­ter note:  Last night’s Thy­roid Patient Com­mu­nity Call on Talkshoe was exce­llent. From thyroid/adrenal patient Vale­rie Tay­lor, who is abso­lu­tely one of the most know­led­gea­ble patients in the world about adre­nals and RT3, we gai­ned good infor­ma­tion how it rai­ses its ugly head when you have high or low cor­ti­sol, low B12, low ferri­tin and other untrea­ted issues, and how to treat it. You can go back to Talkshoe and lis­ten to the broad­cast, which was Epi­sode 7.  See my blog post right below this. As far as future Talkshoe Com­mu­nity Calls: they will always be announ­ced here first.

Below that, you’ll read how cellu­lose as a filler just may be a huge pro­blem in natu­ral desic­ca­ted thy­roid meds. But we are also dis­co­ve­ring that a good desic­ca­ted thy­roid like Natu­reth­roid, even with its cellu­lose, can seem even worse if we have undis­co­ve­red and untrea­ted issues like low B12, low Vit. A, low ferri­tin, low Vit. D and other con­di­tions com­mon with hypothy­roi­dism.  Make sure you have tes­ted for these.

*HO HO HO! Have a STTM book sent to someone  you care about as a CHRISTMAS or HOLIDAY pre­sent. All the work is done for you!