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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!

Oh boy! You are invi­ted to a Thy­roid Patient Com­mu­nity Call on your com­pu­ter which will be held each and every Fri­day night for an hour with myself, Janie, as host.  We had the first one last Fri­day and it was fun and infor­ma­tive. No, I didn’t announce it here because I wan­ted to work on any bugs in the sys­tem as we lear­ned to use it.

Here’s a chance to ask ques­tions about shor­ta­ges of desic­ca­ted thy­roid, options to talk to your doc­tor about to treat your hypothy­roi­dism during this shor­tage period, how to find a good doc­tor, and more.

Times are 7 pm Paci­fic, 8 pm Moun­tain, 9 pm Cen­tral and 10 pm Eas­tern. Just go here: http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc

You can make two choi­ces: just lis­ten to the Audio of the pod­cast talk show, or call in. Phone num­ber will be right on the bot­tom.  You can regis­ter with Talk Shoe and pick a user name, or come in as a Guest.

You’ll also note a chat box.  The handy and beau­ti­ful gals Darla and Diane will usually be there to guide you. If you want to line up to talk in the queue, you’ll be asked the topic of your con­ver­sa­tion in the chat box.  As you wait for me to get to you, you’ll be able to hear the talk through your phone, and will need to MUTE your com­pu­ter sound.

You’ll be seeing guests join us, as well, so watch for each Com­mu­nity Call announ­ce­ment on the above link. And even without a sche­du­led guest, you just never know who is going to pop in and chat.

Come join us! And remem­ber: we are all just patients chat­ting with patients. This is not to replace the rela­tionship with your doc­tor in your treat­ment or for treat­ment advice. Stick with your doc­tor for that.

*Want to be infor­med of these blog posts? Curious what’s on Janie’s mind? Just use the Noti­fi­ca­tions on the left below the links.

* STTM t-shirts are half price! I love sales!

Unfor­tu­na­tely, patients who want to switch to desic­ca­ted thy­roid from T4-only meds like Synth­roid et al, or those already on desic­ca­ted thy­roid who want to fill their next presc­rip­tion, are going to find it dif­fi­cult. There are wides­pread shor­ta­ges in desic­ca­ted thy­roid like Armour, Natu­reth­roid and Westh­roid. (see my posts below).

But there’s good news, and it comes in the form of “Thy­roid”  by Erfa.

Erfa’s “Thy­roid”  is an exce­llent natu­ral desic­ca­ted thy­roid pro­duct accor­ding to the expe­rience of patients who use it. It contains:

• Dried Thy­roid
• Mag­ne­sium Stearate
• Corns­tarch
• Talc
• Sugar

**Note the “sugar”. Patients also report they are able to do this brand of medi­ca­tion sublin­gually! That is good news.

The Erfa web­site sta­tes you can obtain their desic­ca­ted thy­roid medi­ca­tion outside of Canada via a spe­cial access pro­gram and follow their steps:

For patients outside Canada and the US:

For patients in the US:

1. get a valid presc­rip­tion of Thy­roid from your local doc­tor
2. your doc­tor has to fill FDA form 1572 (e-mail us a request at info@ERFA.net
3. Fax or e-mail us the docu­ments at 1 – 514-931‑7330 or info@ERFA.net

Thank you Erfa from Stop the Thy­roid Mad­ness and thy­roid patients all over the world who KNOW what a supe­rior treat­ment desic­ca­ted thy­roid really is!

Word has tric­kled down to me from a few patients and emails that even Natu­reth­roid is get­ting har­der to come by at phar­ma­cies because of the extreme demand on RLC Labs.

No, they are not cea­sing to make desic­ca­ted thy­roid. They just weren’t pre­pa­red for the high demand due to the refor­mu­la­tion of Armour and pro­blems it cau­sed.  And they aren’t kee­ping up and won’t for seve­ral months.

So, if you can’t last with your current presc­rip­tion for seve­ral months, you will pro­bably need to talk to your doc about get­ting a gene­ric ver­sion by Major Phar­macy, or get some over-the-counter like Nutri­Meds, or even the “Hypo Sup­port For­mula” made by RLC Labs, but expect to take much more of either.  Many patients are also men­tio­ning Thyroid-S by Grea­ter Pharma as a bac­kup until RLC catches up.  But it’s by mail order and will take a few weeks to arrive.  Goo­gle any of the above. Finally, you can move a slight step back­wards and talk to your doc about doing synthe­tic T4 and synthe­tic T3.  It’s not going to be quite a good as being on desic­ca­ted thy­roid, but it’s cer­tainly bet­ter than being on T4 alone, don’t you agree?? Keep con­nec­ted to your doc.  And hang in there. This will pass.

Janie

P.S. I’ll be adding more infor­ma­tion to this post tomo­rrow. Check back.

*Want to be infor­med of these posts? Curious what’s on Janie’s mind? Use the Noti­fi­ca­tions on the left and below the links.

Below is the actual release by RLC Labs:

For any patients expe­rien­cing dif­fi­cul­ties in attai­ning either Nature-ThroidTM or Westh­roidTM through their phar­macy, RLC Labs, Inc, asks these indi­vi­duals to have their phar­macy con­tact us directly at 877 – 797-7997 to place an order, or have their phar­macy request a drop-shipment through their who­le­sale supplier.

RLC Labs’ pro­ducts are only avai­la­ble through who­le­sa­lers, phar­ma­cies and or their doc­tors; thus all con­fir­ma­tions and/or trac­king infor­ma­tion will only be avai­la­ble through the who­le­sa­ler, phar­macy, or doctor’s office that pla­ced the order.

RLC Labs is expe­rien­cing a subs­tan­tial inc­rease in orders for Nature-ThroidTM and Westh­roidTM. The recent unex­pec­ted influx has inun­da­ted our cus­to­mer ser­vice and ship­ping depart­ments, thus cau­sing delays and deple­ting our current stock. We are wor­king around the clock to ful­fill all current orders; howe­ver, we can­not gua­ran­tee that
any future orders will be ful­fi­lled until our stock is replenished.

RLC Labs will con­ti­nue to accept orders from our cus­to­mers, howe­ver as of Fri­day August 14^th, we are bac­kor­de­red on all strengths of Nature-ThroidTM and Westh­roidTM. Ship­ment is expec­ted to resume within 90 days.

We regret to inform you of this situa­tion; howe­ver, we can assure you that we are wor­king dili­gently to reple­nish our stock and will resume ship­ping as soon as pos­si­ble. Please accept our sin­ce­rest apo­logy for any inconvenience.

We do unders­tand how much of an impact this has as most of us emplo­yed @ RLC Labs, are hypothy­roid and take our own pro­duct. Thus, we know and unders­tand how impor­tant it is to get pro­duct back into the mar­ket place. We are gra­te­ful for your con­ti­nued patience, patro­nage and support!

Feel free to con­tact our cus­to­mer ser­vice depart­ment with any ques­tions con­cer­ning this mat­ter @ 877 – 797-7997.

Thank you from all of us @ RLC Labs, Inc.

I recently dis­co­ve­red a very humo­rous and appropo medi­cal blog on the net, writ­ten by a Uni­ted King­dom Gene­ral Prac­ti­tio­ner who wisely stays incog­nito. His blog is called The Job­bing Doctor.

And his most recent and humo­rously bri­lliant post is tit­led Hairy legs are bet­ter than blood tests! He desc­ri­bes his occa­sio­nal con­fu­sion when blood tests don’t agree with the patients symptoms.

Says the UK doc: “The text­books teach that the level of cir­cu­la­ting thy­roid hor­mo­nes (which are called T3 and T4) are inver­sely rela­ted to the Thy­roid Sti­mu­la­ting Hor­mone (TSH). If your T3 and T4 are low, your TSH will be high: this sug­gests an unde­rac­tive thy­roid gland. If the T3 and T4 are high and the TSH is low, then you have an ove­rac­tive thy­roid gland. That’s easy, huh!”

But his con­fu­sion sprang forth when a patient’s labs sho­wed “a highish TSH, T4, and a nor­mal T3.” Yet appa­rently her symp­toms didn’t imply there was any pro­blem, so he chose to do nothing as far as chan­ging her treatment.

A month later at her next appoint­ment, this patient expres­sed her appro­val that he didn’t change anything…because her leg hair and eye­brows were coming back.

And his conc­lu­sion?  “Pah! Who needs blood tests!”

Job­bing Doc­tor, you are dis­co­ve­ring what thy­roid patients have been lear­ning over and over for years: it’s SYMPTOMS (or lack up) which need to pull the cart, NOT lab­work. Sure, we love our lab­work. They can give clues to areas where our bodies are screa­ming for help.  But they defi­ni­tely do NOT tell the whole story.

Look at the igno­ra­mus TSH lab test. Count­less patients have wal­ked into their doc­tors offi­ces with clear and obvious hypothy­roid symp­toms – and des­pe­rate for a diag­no­sis – yet the ink spot on the office piece of paper called the TSH lab result proc­laims they are “nor­mal”. And that dubious “nor­mal” diag­no­sis can go on for years before it rises high enough to reveal what was already there by SYMPTOMS.

Or, while on thy­roid medi­ca­tion, patients will have a lame­brain “nor­mal” TSH lab result, yet will con­ti­nue to have their own brand and degree of con­ti­nuing hypothy­roid symp­toms which the clue­less doc­tor dis­mis­ses as an hys­te­ric female inter­pre­ta­tion, motherhood, stress, a need for psycho­lo­gi­cal help.…or just “something else”. Uh huh.

In fact, Job­ber Doc­tor, patients have lear­ned that when they are opti­mal (on desic­ca­ted thy­roid), along with opti­mal ferri­tin and cor­ti­sol), they will gene­rally have a free T3 in the upper part of the range, and a SUPPRESSED TSH, with no symp­toms of hyperthy­roi­dism.  That is gene­ral, and there can be some excep­tions, but ove­rall, it has spo­ken volu­mes to patients on how ina­de­quate thy­roid lab tests can be.  i.e. being in the “nor­mal” range — anywhere in the nor­mal range – can be mean squat.

Thanks for a great post,  UK Job­ber Doc. And P.S.  Desic­ca­ted thy­roid is an even bet­ter treat­ment than thy­ro­xine.

*Want to be infor­med of these blog posts? Curious what’s on my mind? Just use the Noti­fi­ca­tions at the bot­tom left of the links.