naturethroid tags

(This post gar­ne­red a lot of atten­tion, up to FIFTY com­ments just a few hours after it went up. Peo­ple are very inte­res­ted in sha­ring their expe­rien­ces in coping with the shor­ta­ges! See below and add your own.)

This year will go down in his­tory as shoc­kingly mise­ra­ble for enligh­te­ned thy­roid patients on natu­ral desic­ca­ted thy­roid.

First came a refor­mu­la­tion in the most popu­lar brand – Armour by Forest Labs. Patients world­wide in groups and forums repor­ted a serious return of their hypothy­roid symp­toms on this pro­duct. A huge disappointment.

Second came the pro­duc­tion shut­down of the two gene­ric makers of desic­ca­ted thy­roid: Time Caps Labs and Major Phar­ma­ceu­ti­cals. It’s the first step in the FDA’s com­pliance plan to corral all grandfathered-in drugs (drugs already in exis­tence when the the FDA was crea­ted in 1938) and make them each prove the effi­cacy and safety of their medi­ca­tion via very expen­sive cli­ni­cal trials.  i.e. over 110 years of safe and effec­tive use of desic­ca­ted thy­roid is not enough for the FDA?? We are still wai­ting to see the out­come of that plan with RLC  and Forest Labs. – the two who were actually in exis­tence before 1938.

Third came demand being grea­ter than supply and shor­ta­ges. Because of infor­ma­tive patient web­si­tes like Stop the Thy­roid Mad­ness,  Sheila’s TPA-UK, Lyn’s Thy­roi­dUK, Stephanie’s Natu­ral Thy­roid Choi­ces, some areas of about.com (and other good web­si­tes I don’t mean to miss here), plus many fine patient forums and groups,  patients found out why they had con­ti­nuing symp­toms on T4 thy­ro­xine, and demand for natu­ral desic­ca­ted thy­roid grew exponentially.

STTM then crea­ted a list of options for all thy­roid patients until the shor­ta­ges resol­ved them­sel­ves, and also crea­ted CDT (Coa­li­tion for Desic­ca­ted Thy­roid) where patients could dis­cuss alter­na­ti­ves in a sup­por­tive and fac­tual atmosphere.

And we’ve seen some inte­res­ting expe­rien­ces and comments:

The new Armour: One grain tabs star­ted to appear on some phar­macy shel­ves the past month.  Other phar­ma­cies have still been wai­ting.  Many patients appear to have switched to other alter­na­ti­ves, though. One gal still on it feels she is fin­ding suc­cess by adding T3 to the amount of new Armour she is on.  Time will tell if patients can ever find suc­cess with the newly for­mu­la­ted Armour, and most feel it’s a huge loss.

Natu­reth­roid and Westh­roid: Patients repor­ting on their switch to either of RLC Lab’s two iden­ti­cal pro­ducts report doing well, having to raise it slightly or lower it slightly, or just not liking them at all. Others have had a hard time fin­ding it on their phar­macy shel­ves, but have been seeing some appear in the last few weeks.

Erfa’s Thy­roid from Canada: When it became clear that the FDA was allo­wing this exce­llent pro­duct to be ship­ped to patients, many switched and had their presc­rip­tions faxed to a Cana­dian phar­macy. Pri­ces at many of those phar­macy web­si­tes were dou­bled after presc­rip­tions star­ted to come in from the US. Most patient who stuck with it seem to love it, repor­ting you can do it sublin­gually, as well. A few haven’t been impres­sed, but were fin­ding their for­mer suc­cess by rai­sing it.

Com­poun­ded desic­ca­ted thy­roid: In spite of being a more expen­sive option, some patients found suc­cess with this. Others lear­ned they pre­fe­rred the filler to be Aci­dophi­les.  If not the lat­ter, Mic­rocrys­ta­lline Cellu­lose was pre­fe­rred over Methyl Cellu­lose – the lat­ter which appea­red to les­sen the effec­ti­ve­ness of the com­poun­ded thyroid.

Synthe­tic T4 and Synthe­tic T3: some patients switched back to the synthe­tic com­bi­na­tion, but many report that it hasn’t been as effec­tive as desic­ca­ted thy­roid was.

Other options: Patients moved to OTC pro­ducts like Nutri-Meds, etc, which can be much wea­ker. Others sought desic­ca­ted thy­roid from other coun­tries and have found success.

So I’d like to hear from all of you.   Did you go back to synthe­tic T4?  What desic­ca­ted thy­roid did you switch to? What wor­ked and why? What didn’t work for you and why?  What pro­duct do you hope to switch to once you run out of your current meds?

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

* The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! I love sales! Spread the word!

* Pre­fer STTM in book form with more detail? You can read about it here.

*Need options for thy­roid treat­ment during the current shor­ta­ges due to demand being grea­ter than supply? Go here.

On the heels of an exce­llent Thy­roid Patient STTM Com­mu­nity Call on iodine with guest Stepha­nie Buist (see below), it was just announ­ced by the Food Stan­dards Autho­rity of Aus­tra­lia and New Zea­land (FSANZ) that Aus­tra­lia will add the mic­ro­nu­trient iodine to bread. New Zea­land already star­ted that prac­tice in Sep­tem­ber of last year. 

The announ­ce­ment men­tions the impor­tance of iodine to thy­roid func­tio­ning, as well as for infant brain and ner­vous sys­tem, both during and after preg­nancy.  For the lat­ter, it sta­tes “Not having enough iodine during preg­nancy and early childhood can cause deve­lop­men­tal delay and lead to reduc­tions in men­tal per­for­mance. This damage prior to 2 – 3 years of age is irreversible.”

Appa­rently, the  soils of Aus­tra­lia and New Zea­land are not too pro­li­fic in iodine, and patient levels have been revea­ling that fact for deca­des. But Stepha­nie Buist, the friendly and know­led­gea­ble owner of the yahoo group Iodine, as well as a thy­roid can­cer sur­vi­vor, sta­tes that even most US soils are beco­ming deple­ted.  It’s not just a pro­blem of the northern US “goi­ter belt”, Europe or Africa anymore.

The impor­tance of iodine goes even farther than thy­roid func­tio­ning, preg­nancy and infant brain deve­lop­ment. It has a key role in breast health, your immune sys­tem, bones, estro­gen meta­bo­lism, lung health, eyes, and can­cer pre­ven­tion. The iodine4health web­site lists many bene­fits as well as areas not unders­tood yet.

How much do we need? Experts like Abraham, Flechas and Browns­tein will empha­ti­cally state that we pro­bably need more than is recom­men­ded.  At least 50 mg of iodine may be neces­sary for awhile to bring your levels back up to healthy amounts, besi­des stop the the side effects of iodine on hashi­mo­tos disease.  i.e. thin­king you are get­ting enough iodine natu­rally from foods, or even from natu­ral desic­ca­ted thy­roid like Natu­reth­roid, Erfa’s Thy­roid, or com­poun­ded, may not be so.

How do you find out if you are iodine defi­cient? Stepha­nie sta­ted on the Com­mu­nity Call that the majo­rity of folks pro­bably are defi­cient. But if you want to be sure, you can do the Iodine Loa­ding Test.

What are good iodine sup­ple­ments? Lugols is an liquid variety, and my hus­band and I per­so­nally use it in our mor­ning juice or Emer­gen C (my hus­band uses Emer­gen C in water since he’s dia­be­tic, and it’s a good way for him to get his Vita­min C).   In pill form is Iodo­ral, deve­lo­ped by Abraham.  You can goo­gle either and find some web­site sour­ces. Also good to take with iodine sup­ple­men­ta­tion is mag­ne­sium, Vita­min C, and sele­nium, which helps with the detox effects.

You can lis­ten to the recor­ding of Stephanie’s and my con­ver­sion on iodine by going to the link below for Epi­sode 5 of the Thy­roid Patient STTM Com­mu­nity Call. (Yes, I will correct the skip­ping you hear in my voice next time.)

Read Diana’s expe­rience with iodine hel­ping her get off desic­ca­ted thy­roid. Not something we can all do, but it hap­pe­ned to her!

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

* The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! I love sales!

* Pre­fer STTM in book form with more detail? You can read about it here.

*Need options for thy­roid treat­ment during the current shor­ta­ges due to demand being grea­ter than supply? Go here.

Some­ti­mes there is a sil­ver lining with the storm cloud of bac­kor­de­red US desic­ca­ted thyroid.

Erfa, the makers of the Cana­dian ver­sion of natu­ral desic­ca­ted thy­roid, simply called “Thy­roid”, has recently announ­ced that the FDA is not requi­ring the exten­sive FDA Form 1572 from US citi­zens and their doc­tors when they fill their presc­rip­tions from Erfa directly. i.e. it’s now a lot easier to get your presc­rip­tion filled directly from them.

http://www.erfa-sa.com/thyroid_usa.htm

And those who have star­ted to use Erfa’s Thy­roid report being quite plea­sed. A cherry on top is that Thy­roid has that old sweet taste we used to all like with the old Armour, and it can be done sublin­gually as well! You can see the ingre­dients here.

Also, I am con­ti­nuing to get emails from patients that both Armour and Natu­reth­roid is star­ting to appear on phar­macy shel­ves, even if in small quan­ti­ties.  I’m per­so­nally not too exci­ted about Armour reap­pea­ring if Forest con­ti­nues to make the refor­mu­la­ted ver­sion. Just too many patients repor­ting a return of hypo symp­toms, even when they raise it, plus new symp­toms of under­treat­ment and/or cha­llen­ged adre­nals thanks to the refor­mu­la­ted ver­sion. Sad. Oh how we will all miss the old Armour.

In the mean­time, here are options for thy­roid treat­ment we all have until we see a good return of desic­ca­ted thy­roid, inc­lu­ding Natu­reth­roid and Westh­roid. They are all far, far bet­ter than being on T4 alone like Synth­roid, Levoxyl, levothy­ro­xine, et al. You’ll also note com­poun­ded thy­roid, which can be a good option, and you can read about on a recent blog post.  Aus­tra­lians hap­pily use com­poun­ded in their own country. Any option you and your doc­tor choose may mean a read­just­ment by your body, by the way.

Want to talk to other patients on how they are dea­ling with the shor­ta­ges? Join the Coa­li­tion for Desic­ca­ted Thy­roid.  Or if you simply need patient feed­back about your hypothy­roi­dism, go to the Talk to Others page.  Remem­ber that no patient group is meant to be a subs­ti­tute for your rela­tionship with your doctor.

**The next Thy­roid Patient Com­mu­nity Call will be held Thurs­day Oct. 8^th on TalkShoe, and our topic will be iodine and your thy­roid with patient expert Stepha­nie Buist. Come join us and lis­ten right on your com­pu­ter, or you can also talk live to Stepha­nie or Janie with your questions.

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

* The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! I love sales!

* Pre­fer STTM in book form with more detail? You can read about it here.

With all the panic among thy­roid patients of the last seve­ral weeks, we are now seeing light at the end of the current tun­nel of desic­ca­ted thy­roid shor­ta­ges. More reports are coming in by patients that it’s appea­ring on shel­ves at their local phar­ma­cies, inc­lu­ding both Armour and Natu­reth­roid. Sure, it’s a tric­kle com­pa­red to the amount of US patients that need it. But it’s a sign of hope of more to come.

On the CDT (Coa­li­tion for Desic­ca­ted Thy­roid) yahoo group, where patients have been dis­cus­sing the shor­ta­ges and fin­ding pla­ces to get their desic­ca­ted thy­roid, patient Ele­nor gave just one more example:

“After losing “my” Wal-Mart’s last left-over bottle of Natu­reth­roid to some other thy­roid per­son (lucky him or her){wink}, I called around to pharms — and Sam’s Club Pharm two towns over had just got­ten ONE bottle of 60mg Armour in yes­ter­day. (I did also find a CVS that had a bottle and a half of the 90mg Armour — so there are some dribs-and-drabs left around… My doc wouldn’t write for me to get that too…) (YAY!) Emai­led my doc’s nurse beg­ging her to do it right away — which thank­fully she did, so they dis­pen­sed it “to me” and I can pick it up today! Down to three days left in my pos­ses­sion, so … WHEW!”

Ele­nor conc­lu­ded: Still gonna see my doc 5^th Oct and try to order 500 tablets from Canada. I do not EVER want to be scram­bling like this again — for ANY reason…

And we all agree with you, Ele­nor!

Clearly, our current shor­ta­ges were cau­sed by two fac­tors: demand being grea­ter than supply thanks to web­si­tes like Stop the Thy­roid Mad­ness (STTM), forums, groups and others, as well as the remar­kably poor timing by the FDA in cau­sing the only remai­ning gene­ric makers of desic­ca­ted thy­roid to cease production.

And in case you haven’t caught up with what’s going on, you can read a sum­mary of the his­tory about the FDA and regu­la­tions which will explain what we will have to face for desic­ca­ted thy­roid in the future, which is our real challenge.

**JOIN US TONIGHT for our weekly THYROID PATIENT COMMUNITY CALL hos­ted by Janie Bowthorpe. We’ll have an open topic night and perhaps a sur­prise guest (still wai­ting on con­fir­ma­tion on that). Let’s talk about the shor­ta­ges, ways to con­ti­nue trea­ting during this time, and more. NOTE that I have moved up the times by one hour. Just click on the link and you’ll see a count­down of when it starts: 6 pm Paci­fic, 7 pm Moun­tain, 8 pm Cen­tral and 9 pm Eastern. 

**Need alter­na­ti­ves during this shor­tage time? Here are options you can consider. 

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

* The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! I love sales!

If you have been kee­ping up with my posts, you’ll know that thy­roid patients have been facing a shor­tage of desic­ca­ted thy­roid for many weeks, pro­bably due to sharp inc­rea­sed demand i.e. thy­roid patients have been fin­ding out how lousy T4-only treat­ment like Synth­roid has been for them, and how much bet­ter desic­ca­ted thy­roid is. 

That demand became espe­cially true after a refor­mu­la­tion of Armour by Forest Labs in 2009 drove patients to RLC’s Natu­reth­roid and Westh­roid. The “new” Armour cau­sed a return of hypo symp­toms plus new mad­de­ning ones, inc­lu­ding pal­pi­ta­tions and sleep pro­blems never seen before.  As Julia Roberts said in the 1990 movie Pretty Woman: Big mis­take, Big, Huge.

In addi­tion, it didn’t help when Time Cap Labs, a phar­ma­ceu­ti­cal which made plenty of desic­ca­ted thy­roid for other phar­ma­ceu­ti­cals, stop­ped pro­duc­tion after being con­tac­ted by the FDA. This action was pro­bably in line with their aims to make long-term unap­pro­ved drugs become appro­ved, even if the timing was inc­re­dibly stupid.

As all the above was hap­pe­ning, panic ensued! 

We’ve heard all varie­ties of nega­tive pre­sump­tions from thy­roid patients about what cau­sed the shor­tage, inc­lu­ding an FDA cons­pi­racy and an overt belief that desic­ca­ted thy­roid is about to be remo­ved.  Patients have threa­te­ned law suits, bla­med phar­ma­ceu­ti­cals, and/or sent nume­rous let­ters to FDA plea­ding to keep desic­ca­ted thy­roid as if it was to be gone tomo­rrow. Even I, at first, fell in line won­de­ring about the FDA.

But it star­ted to dawn on me, as it has others, than we have been jum­ping the gun, not giving enough empha­sis to facts and reason.

And finally, facts and rea­son are star­ting to appear on blogs and groups:

1) Yes, Forest Labs, the makers of Armour, and RLC, the makers of Natu­reth­roid and Westh­roid, state they have not been con­tac­ted by the FDA. We have no rea­son to dis­be­lieve them!

2) Yes, RLC is wor­king hard to catch up, as is Ame­ri­can Labo­ra­to­ries, both state. We also have no rea­son to dis­be­lieve them!

3) Yes, thy­roid patients who know the supe­rio­rity of desic­ca­ted thy­roid have always been there to sup­port them. Glad to see that recog­ni­tion in blog and group postings.

4) Yes, as health wri­ter Mary Sho­mon has sta­ted, information-gathering, brains­tor­ming, and com­mu­ni­ca­ting with our doc­tors is a good thing to be doing.  That is con­trary to making panicky nega­tive pre­dic­tions about desic­ca­ted thy­roid,  rall­ying for law suits, and fee­ding ideas to the FDA that may not be there in the first place.

5) Yes, we need to put energy in let­ting the world know about the supe­rio­rity of desic­ca­ted thy­roid treat­ment in our lives. That is where our power lies in the face of clue­less Endoc­ri­no­lo­gists and their equally-clueless medi­cal boards like AACE. 

6) Yes, we need to lis­ten to and sup­port the phar­ma­ceu­ti­cals and labo­ra­to­ries which give us the desic­ca­ted thy­roid we need. It’s they who have to walk the line with the FDA. Let’s lis­ten to their cau­tions and sup­port them. 

Stran­gely, there are still mis­con­cep­tions being repor­ted by patient blogs and posts:

1) That we don’t know what cau­sed the shor­tage. But we do! Demand is as logi­cal as it gets.  All of us have suc­cee­ded in get­ting the word out! That is exactly why I crea­ted STTM in the first place!  And by emails I get every week, it’s clear that it’s been working.

2) That groups like the Coa­li­tion for Desic­ca­ted Thy­roid (CDT) have a wait-and-see atti­tude. That is as silly as saying STTM wants to ban T4 or encou­ra­ges self-treatment. There are simply some thy­roid patients who don’t agree with the extreme panic and nega­tive pre­sump­tions that have been going on, and want more rea­son in our pro-activity!  Patients have been encou­ra­ged to spread the word in any way pos­si­ble about the supe­rio­rity of desic­ca­ted thy­roid and how it’s chan­ged lives, NOT to feed dire nega­tive pre­dic­tions which only end up giving ideas we don’t want to give! You are most wel­come to join the Coa­li­tion above in addi­tion to other groups.

Good for patients and advo­ca­tes alike for put­ting more rea­son and fact in this situation. 

I’m also glad to see some stra­te­gic, pro-active behind-the-scenes work going on as a just-in-case line of acti­vism. That is the way it should have always been – a plan for action “just in case”, not dire pre­dic­tions and fear mon­ge­ring as if it all WAS going to happen.

We’ll get through this, folks. Here are options for thy­roid treat­ment in the mean­time. And if you want to talk to other patients, join our thy­roid patient Com­mu­nity Call this Fri­day. Details are found in the Sep­tem­ber 7^th blog post.