Patients 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.

I have been dri­ving all day, brin­ging my hus­band back home after serious hand sur­gery yes­ter­day. And while I was away from the com­pu­ter, I recei­ved the below via the Con­tact Me form of STTM, writ­ten by Mary Budin­ger for the Ari­zona Net News jour­nal, Sep­tem­ber 16, 2009:

Dr. Mark Starr’s office team wan­ted to send over a por­tion of an article just writ­ten for an Ari­zona health maga­zine:

Desic­ca­ted thy­roid from pigs is a bio-identical, com­plete hor­mone pre­pa­ra­tion, con­tai­ning the entire spec­trum of thy­roid hor­mo­nes inc­lu­ding T4, T3, T2, and T1 that are in the human thy­roid gland.

Current FDA appro­ved thy­roid medi­ca­tions inc­lude Synth­roid, Unith­roid, Levoxyl, and Levothy­ro­xine (all only con­tain T4), and Cyto­mel (only T3). These hor­mo­nes are synthe­tic and con­tain only a por­tion of the thyroid’s hormones.

Dr. Mark Starr of Phoe­nix, Ari­zona, said patients have called him, fran­tic that desic­ca­ted thy­roid is una­vai­la­ble. “It is so key to my prac­tice, I have enough for my patients. So far, it appears that when supply catches up with demand in a few months, the shor­tage will be over.”

Dr. Starr is the author of “Hypothyroidism-Type 2.” He said synthe­tic thy­roid acts ener­ge­ti­cally dif­fe­rently in the body. “All living things have a right spin, and synthe­tic medi­ca­tions have a left spin. The desic­ca­ted thy­roid is bet­ter tolerated.” 

Dr. Broda Bar­nes did a study that revea­led a rela­tive into­le­rance to a synthe­tic thy­roid pro­duct con­tai­ning T3 and T4 (Thy­ro­lar). One-fifth of the patients who had done well on desic­ca­ted thy­roid deve­lo­ped rapid heart beats and pal­pi­ta­tions when switched to Thy­ro­lar. Dr. Bar­nes also did a major research study on desic­ca­ted thy­roid that invol­ved thou­sands of patients over 30 years; it sho­wed a 94 per­cent reduc­tion in the num­ber of expec­ted heart attacks. This study is the sub­ject of the 1976 book “Sol­ved: The Riddle of Heart Attacks.” 

Lipi­tor is the best selling drug in the world. But for the first half of the 20^th cen­tury, desic­ca­ted thy­roid was the stan­dard treat­ment for high cho­les­te­rol. Ele­va­ted cho­les­te­rol and trigly­ce­ri­des are one of the myriad symp­toms of hypothy­roi­dism. Dr. Bar­nes’ book inc­lu­ded a chap­ter entit­led “The Demise of the Cho­les­te­rol Theory.” Desic­ca­ted thy­roid nor­ma­li­zed cho­les­te­rol and trigly­ce­ri­des in 95% of the patients Dr. Bar­nes trea­ted. The 5% who had per­sis­tently ele­va­ted levels had no inc­rea­sed inci­dence of heart attacks. Desic­ca­ted thy­roid the­rapy also resol­ved a long list of other hypothy­roid symp­toms such as fati­gue, cold into­le­rance, joint and muscle pain, dry skin, ina­bi­lity to lose weight, hea­daches, and mens­trual pro­blems. One of the most impor­tant bene­fits that Dr. Bar­nes demons­tra­ted in stu­dies on both ani­mals and his patients was that desic­ca­ted thy­roid inc­rea­ses immu­nity and allows the body to fight off infec­tions. As we come into swine flu sea­son, this is par­ti­cu­larly important.”

Dr. Starr, I love the way you put it: “All living things have a right spin, and synthe­tic medi­ca­tions have a left spin. The desic­ca­ted thy­roid is bet­ter tole­ra­ted.” And that’s exactly why the web­site Stop the Thy­roid Mad­ness exists – patients all over the world have found out what a far bet­ter “right spin” treat­ment desic­ca­ted thy­roid has been for them!  So we pre­sent this infor­ma­tion, hoping that more and more patients can learn from the paths wal­ked before them, and take this right into their doc­tors offices.

And about Thy­ro­lar, which is a com­bi­na­tion of synthe­tic T4 and synthe­tic T3:  we’re glad it exists. But…there have been nume­rous patients over the years who tried the com­bi­na­tion of synthe­tic t3/ synthe­tic T4, and who then switched to desic­ca­ted thy­roid. And they iden­ti­cally report on the NTH thy­roid group that they got far bet­ter results from desic­ca­ted thy­roid. That is power­ful information.

And yes, Dr. Starr, we are loo­king for­ward for supply to catch up, because natu­ral desic­ca­ted thy­roid is a godsend. 

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Join the Thy­roid Patient Com­mu­nity Call on Talk Shoe this Fri­day. UPDATE: the Pre­si­dent of Hook’s Apothe­cary, a com­poun­ding phar­macy that ser­ves Illi­nois and Indiana, will be in the chat to talk about com­poun­ding desic­ca­ted thyroid.

Also check out the post below con­cer­ning pos­si­ble hints that we are clo­ser to seeing more desic­ca­ted thy­roid on our shel­ves?

*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!

Wish you could talk to others about rele­vant facts con­cer­ning the current shor­tage, the FDA’s actions with Time Caps Labs, DESI and the New Drug Appli­ca­tion, cli­ni­cal trials, and rela­ted con­cerns? Have impor­tant infor­ma­tion to share?

A new group has just been crea­ted to work along­side other groups, inc­lu­ding save natu­ral thy­roid. Smartly called the Coa­li­tion for Natu­ral Desic­ca­ted Thy­roid, it  repre­sents unity of con­cern and is crea­ted for patients, advo­ca­tes, medi­cal pro­fes­sio­nals, repre­sen­ta­ti­ves of phar­ma­ceu­ti­cals who manu­fac­ture desic­ca­ted thy­roid, or anyone with an inte­rest in the four aims of this group:

1) Sha­ring of fac­tual infor­ma­tion con­cer­ning natu­ral desic­ca­ted thy­roid
2) Dis­cus­sion of current issues rela­ted to desic­ca­ted thy­roid
3) Unity among all con­cer­ned
4) Coor­di­na­tion of grass­roots action where needed.

The dis­cus­sion, sup­port and action of this group does not limit itself to any one group, advo­cate, web­site or forum, and wel­co­mes any men­tion of infor­ma­tion from web­si­tes, advo­ca­tes, medi­cal pro­fes­sio­nals or etc. which/who post about or have the same con­cerns as the aims above.

Join the group here: http://health.groups.yahoo.com/group/CoalitionForDesiccatedThyroid

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!

I have been watching with inte­rest the past week about the jus­ti­fied ire of patients being expres­sed all over patient groups in the inter­net. And in case you’ve been too busy with school star­ting or end-of-summer acti­vi­ties, it invol­ves one of the nation’s lar­gest mail order phar­ma­cies as well as the lar­gest Phar­macy Bene­fits Mana­ger (PBM):  Medco.

In a sta­te­ment you can read right on their web­site, they state:

1)  there is a “nation­wide shor­tage of porcine-derived desic­ca­ted thy­roid”
2)  they are “uncer­tain about con­ti­nued avai­la­bi­lity.”
3)  “ask your doc­tor if a synthe­tic thy­roid medi­ca­tion, such as levothy­ro­xine is right for you.”

In Medco’s direct mes­sage to doc­tors, they state;

1)  desic­ca­ted thy­roid does not have the U.S. Food and Drug Admi­nis­tra­tion (FDA)  Fede­ral Drug appro­val”
2)  the FDA  “may remove any remai­ning unap­pro­ved pro­ducts from the mar­ket.”
3)  the shor­tage is due to this “uncer­tainty”.
4) “the Ame­ri­can Asso­cia­tion of Cli­ni­cal Endoc­ri­no­lo­gist recom­mends levothy­ro­xine over desicc­ca­ted thy­roid, lio­trix, com­bi­na­tion of thy­roid hor­mone, or triio­dothy­ro­nine (T3) for the treat­ment of hypothyroidism.”

Cla­ri­fi­ca­tion on their statements

If you are just now fin­ding out about this,  do note the following:

1) There is not a nation­wide shor­tage of all desic­ca­ted thy­roid. There is a shor­tage of Armour because of its 2009 refor­mu­la­tion. (See my blog posts below about pro­blems with the newly for­mu­la­ted Armour.)
2) Natu­reth­roid by RLC Labs con­ti­nues to be avai­la­ble. They are wor­king hard to keep up.  See my post on Natu­reth­roid.
3) Desic­ca­ted thy­roid was around long before the esta­blish­ment of the FDA, so they are grand­fathe­red in and still work with the FDA gui­de­li­nes.
4) There has been no sta­te­ments by the FDA that they are remo­ving desic­ca­ted thyroid. 

An even more impor­tant reve­la­tion in this entire Medco scandal

There is actually an underl­ying mes­sage in the entire Medco fiasco that you should find even MORE dis­tur­bing: the con­ti­nued  pro­mo­tion of T4, aka levoth­ro­xine, as an ade­quate treat­ment of hypothy­roi­dism.  And this is not just a faux pas of Medco, it con­ti­nues to be the igno­rant opi­nion of far too many doc­tors, medi­cal schools and medi­cal boards. All you have to do is look at what has hap­pe­ned in the UK with the Royal College of Phy­si­cians to see the idiocy abounding.

Over 100 years ago, desic­ca­ted thy­roid was found to be an exce­llent treat­ment for hypothy­roi­dism.  I give pre­cise details about the first use of desic­ca­ted thy­roid in Chap­ter 2 in the Stop the Thy­roid Mad­ness book. It worked!

But in the early 1960’s, the tide tur­ned thanks to a batch of desic­ca­ted thy­roid that tur­ned out not to be what it said it was.  This is docu­men­ted in the 1970 Phar­ma­co­lo­gi­cal Basis of The­ra­peu­tics.  And phar­ma­ceu­ti­cals, espe­cially  Knoll Phar­ma­ceu­ti­cals who first table­ted levothy­ro­xine aka Synth­roid in 1955,  jum­ped to pro­mote T4-only as a “new and modern medi­ca­tion”.  (See page 41 and 42 in the STTM book).  And doc­tors and medi­cal schools fell for it hook, line and sinker.

And to this day, levothy­ro­xine con­ti­nues to be pur­por­ted as an accep­ta­ble and logi­cal treat­ment choice for hypothy­roi­dism.  But patients all over the world beg to dif­fer.  T4 medi­ca­tions like Synth­roid, Levoxyl, Eltro­xin, Oro­xine and others simply leave all patients with their own uni­que amount and degree of lin­ge­ring hypothy­roid symp­toms, no mat­ter how high you raise it. 

I also find it hugely dis­tur­bing to refer to AACE (Ame­ri­can Asso­cia­tion of  Cli­ni­cal Endoc­ri­no­lo­gists) as if they are the grand poo­pah of kno­wing what’s right for thy­roid patients. They are NOT.  Millions of thy­roid patients who have switched to desic­ca­ted thy­roid, T3, or a combo of T4 and T3 will tell them hands-down that they have got­ten FAR bet­ter results, and most espe­cially with desic­ca­ted thy­roid like the “old” Armour, and now Naturethroid.

Visi­ting nume­rous thy­roid patient groups will reveal how patients feel about Endoc­ri­no­lo­gists they have visi­ted throughout the years.  Their expe­rien­ces are far from flat­te­ring. In other words, with a few excep­tions, thy­roid patients are NOT impres­sed with Endo’s.

Medco’s sta­te­ments are defi­ni­tely a con­cern for patients and range from pre­sump­tous to unfac­tual.  But those sta­te­ments only repre­sent a far wider pro­blem around the world in the medi­cal com­mu­nity.  Cli­ni­cal pre­sen­ta­tion and wis­dom has been thrown out the win­dow by doc­tors.  So patients have to con­ti­nue sprea­ding the word about the far supe­rior treat­ment of desic­ca­ted thy­roid, and their pro­ble­ma­tic expe­rience with T4. 

Want to be infor­med of these posts so YOU can be infor­med? Curious what’s on Janie’s mind? Use the Noti­fi­ca­tions on the left at the bot­tom of the links. 

***50% off sale!! All STTM t-shirts are now on sale. I love sales. Not only do they help sup­port this site, they are a great way to spread the word. Go here.   Did you know that Laughing Grape Publishing will send a STTM book directly to your doc­tor?