desiccated 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.

I once crac­ked open an egg to find it had TWO shells.  And that oddity is equi­va­lent to fin­ding an Endoc­ri­no­lo­gist who sup­ports the use of natu­ral desic­ca­ted thy­roid. 

Voila!! ~~ you can lis­ten and talk to an Endo who does just that on this Thurs­day evening’s popu­lar THYROID PATIENT COMMUNITY CALL on TalkShoe. 

His name is Dr. Gary Pep­per, Board Cer­ti­fied by the Ame­ri­can Boards of Inter­nal Medi­cine, and Endoc­ri­no­logy and Meta­bo­lism and editor-in-chief of metabolism.com.  Besi­des ser­ving many years in dis­tin­guished lea­dership posi­tions, he was selec­ted as one of the top 100 phy­si­cians in New York City by New York Maga­zine and is also a fea­tu­red expert with CNBC and ivi­llage on topics of dia­be­tes and endoc­ri­no­logy. He sta­tes:  Almost daily I reread the words of Sir William Osler: “It’s often more impor­tant to know what sort of per­son this disease has than to know what disease the per­son has.”

i.e. this is one of a rare but gro­wing breed of doc­tors who sup­ports what we as thy­roid patients already know – that desic­ca­ted thy­roid is a five-star hypothy­roid treat­ment and T4-only is about as effec­tive as a dough­nut diet for most. And lo and behold,  Dr. Pep­per is an Endoc­ri­no­lo­gist! Of course, I can give no gua­ran­tees how he is as a doc­tor in his own office, but I do appre­ciate his unders­tan­ding that T4-only treat­ment may not be the best way to treat hypo.

Join us this Thurs­day eve­ning, 6 pm Paci­fic, 7 pm Moun­tain, 8 pm Cen­tral and 9 pm Eas­tern by clic­king on the first link above tit­led Thy­roid Patient Com­mu­nity Call.  When on that page, you’ll also see the exact day and time left before the call. You’ll be able to lis­ten to the call right on your com­pu­ter, or you can dial in and lis­ten on your phone. There is also an option to talk one-on-one live with Dr. Pep­per and Janie.

And remem­ber: neither I or Dr. Pep­per can offer per­so­nal medi­cal advice or pro­vide indi­vi­dual spe­ci­fic coun­se­ling. Those are bet­ween you and your per­so­nal phy­si­cian.

***P.S.  Phar­ma­Ti­mes this month repor­ted that this quarter’s sales of  Synth­roid (levothy­ro­xine) were up 3.7% to $134 million by Abbott Labs. Sad for most of those patients. If you know of someone who has been put on a T4 med, send them here: www.stopthethyroidmadness.com/t4-only-meds-dont-work or to the audio page here: www.stopthethyroidmadness.com/audio-shorts (third one down).

*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!