thyroid 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.

Last May, a very inte­res­ting article appea­red in the May 2009 issue of the Jour­nal of Cli­ni­cal Endoc­ri­no­logy and Meta­bo­lism, tit­led For Some, L-Thyroxine Repla­ce­ment Might Not Be Enough: A Gene­tic Ratio­nale and pre­sen­ted by Endoc­ri­no­lo­gists in Bris­tol in the UK. It’s accom­pa­nied with an edi­to­rial by Endoc­ri­no­lo­gists Brian W. Kim and Anto­nio C. Bianco.

This is the same article refe­rred to by Endoc­ri­no­lo­gist Dr. Gary Pep­per on the last Thy­roid Patient Com­mu­nity Call on Talkshoe.

Basi­cally, the article sta­tes that a gene­tic varia­tion in the enzyme that con­verts T4 to T3, deio­di­nase D2 (also called Type 2 Deio­di­nase, or 5′-Deiodinase), may be res­pon­si­ble for why so many thy­roid patients don’t do well on Synth­roid, Levoxyl, levothy­ro­xine, etc, and in turn, do so much bet­ter on natu­ral desic­ca­ted thy­roid like Natu­reth­roid, Erfa’s Thy­roid, or the com­bi­ned synthe­tic T4 and synthe­tic T3 (Cytomel). 

In other words, where some may have a strongly func­tio­ning deio­di­nase D2 enzyme which con­verts T4 to the active T3 well, others may have a modi­fied deio­di­nase D2 enzyme, cau­sing less opti­mal conversion.

In the Edi­to­rial, the two Endos Kim and Bianco explain the rea­lity of “polymorphism” – a con­di­tion in nature in which chan­ges or varia­tions occur, and in one patient from another, a change in the DNA.  As rela­ted to con­ver­sion of T4 to T3,  some thy­roid patients have a less effec­tive deio­di­nase D2 enzyme in the con­ver­sion of T4 to T3.  Spe­ci­fi­cally, there is a com­mon variant of the gene, threo­nine (Thr) 92 ala­nine (Ala), and it results in dec­rea­sed D2 enzy­ma­tic activity.

The study pro­po­ses that this alte­ra­tion from poly­morphism occurs in 16% of those stu­died, and conc­lu­des that the majo­rity don’t have this pro­blem, and thus, “most do fine on T4-only medi­ca­tions”. But 16% do have this pro­blem and need the com­bi­ned the­rapy of T4 with T3.

Bris­tol was also men­tio­ning this rea­lity in 2004 here, even if they thought it was as low as 5%.

As Dr. Pep­per hin­ted, this study could do won­ders to open the eyes of Endoc­ri­no­lo­gists about the use of desic­ca­ted thy­roid, or at the very least, about com­bi­ned hypothy­roid treat­ment with synthe­tic T3 added to synthe­tic T4.  And I’m glad for that when so many patients have found Endoc­ri­no­lo­gists to be narrow-mindedly stuck on Synth­roid or other T4-only thy­ro­xine products.

Of course, infor­med thy­roid patients know this is only a baby step in the right direc­tion, even if a good one! So we’ll rejoice for this study, and watch for more pro­gress from the medi­cal com­mu­nity and Endoc­ri­no­logy in gene­ral. For exam­ple, saying that “most do fine on T4” simply because they have may a non-variation might be pro­ven wrong as phy­si­cians take the time to really look at those “fine” patients, espe­cially as they age and symp­toms of an infe­rior treat­ment do pop up. And though the com­bi­na­tion of synthe­tic T3 with synthe­tic T4 defi­ni­tely gives bet­ter results, thy­roid patients who then moved to desic­ca­ted thy­roid with it’s T4, T3, T2, T1 and cal­ci­to­nin report even bet­ter results and cli­ni­cal pre­sen­ta­tion!  We’ve also lear­ned that the TSH lab test abso­lu­tely sucks when it comes to diag­no­sis and treat­ment.  Read TSH Why It’s Use­less, or see even more detail in Chap­ter Four of the STTM book, tit­led Thy­roid Sti­mu­la­ting Hooey.

And finally: do thy­roid patients really believe that pro­blems with T4-only treat­ment is simply due to a gene­tic abnor­ma­lity or varia­tion? Maybe. But isn’t it funny that a healthy human thy­roid does NOT depend solely on con­ver­sion, but also gives direct T3. hmmmmmm

P.S.  Patients also know that the use of the sup­ple­ment Sele­nium helps with con­ver­sion, by the way, but has never stop­ped our first-hand know­ledge that desic­ca­ted thy­roid rocks!

*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.

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.

We had a great Thy­roid Patient Com­mu­nity Call Fri­day night on TalkShoe with John Voliva, RPh, the Pre­si­dent of Hooks Apothe­cary in Evans­vi­lle, Indiana. Hooks Apothe­cary is a compounding-only phar­macy that has been in exis­tence for ten years and is a small and high qua­lity family-owned business.

And with our current shor­tage of desic­ca­ted thy­roid via the tablets we were used to, com­poun­ding phar­ma­cies are a good alter­na­tive in the mean­time. Here’s what we lear­ned from Mr. Voliva:

1) Dif­fe­rent com­poun­ding phar­ma­cies will use dif­fe­rent fillers. Hooks Apothe­cary, for exam­ple, uses pow­de­red aci­dophi­les, the “active cul­ture” which helps replace the good flora in your gut and impro­ves digestion.

2) Com­poun­ded desic­ca­ted thy­roid can be more expen­sive for two rea­sons: they acquire sma­ller amounts of the pow­der as com­pa­red to the huge amounts obtai­ned by a phar­ma­ceu­ti­cal like Forest, and it takes time to com­pound it.

3) A good com­poun­ding phar­macy will give you the Cer­ti­fi­cate of Analy­sis right when you ask for it, and you should ask for it. This Cer­ti­fi­cate will tell you how much T4 and T3 is in one grain..and it’s not always simply 38/9 mcg.  It could be 35/8.6 or 39/8.5 per grain…for exam­ple.   Find out because there are allo­wed devia­tions of 10 mcg +-.  A really good phar­macy will shoot for an even bet­ter devia­tion and will also pro­duce that Cer­ti­fi­cate right when you ask for it, not a day later. To not receive that docu­men­ta­tion right when you ask implies they really weren’t paying much atten­tion to the deviation.

4) A com­poun­ding phar­macy will get bet­ter devia­tions when they create a 65 mg grain of com­poun­ded desic­ca­ted thy­roid than when they create a 60 mg grain.

5) Top notch Com­poun­ding Phar­ma­cies will be acc­re­di­ted by, or be close to com­ple­ting the steps towards, the Phar­macy Com­poun­ding Acc­re­di­ta­tion Board.

6) Com­poun­ding phar­ma­cies can’t make a desic­ca­ted thy­roid trouche because of the pro­blems with heat in the pro­ces­sing of the trouche.

7) Mr. Voliva feels it would be too easy to over­dose with trans­der­mal (on the skin) desic­ca­ted thyroid.

8 ) Com­poun­ding phar­ma­cies, via their 5 – 6 dis­tri­bu­tors, get the pow­der from Ame­ri­can Labo­ra­to­ries.  But not all com­poun­ding phar­ma­cies will be as dili­gent as others to make sure the devia­tion is clo­ser to 5%.

9) If the com­poun­ding phar­macy is get­ting their pow­der via the dis­tri­bu­tor PCCA (Pro­fes­sio­nal Com­poun­ding Cen­ters of Ame­rica), you can be assu­red you are get­ting a good pro­duct.  Ask the phar­ma­cist where they are get­ting it.

10) Com­poun­ding phar­ma­cies gene­rally have plenty of desic­ca­ted thy­roid powder.

My apo­lo­gies to a group of callers whose chat ques­tions I wasn’t able to see. I have sent a ques­tion about that to Talk Shoe’s Cus­to­mer Sup­port to find an ans­wer before the next Com­mu­nity Call. But on the good side,  the audio wor­ked on everyone’s computer.

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 unpro­fes­sio­nal 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!