thyroid patients tags

And now that I have your atten­tion, here’s the ans­wer straight from the mouth of Kenny Soe­joto, Chief Ope­ra­ting Offi­cer of the only North Ame­ri­can maker of desic­ca­ted por­cine natu­ral thy­roid pow­der (Ame­ri­can Labo­ra­to­ries): a firm NO!

“We have amply supply and so do the dis­tri­bu­tors for com­poun­ding phar­ma­cists”, unders­co­res Soe­joto when I chat­ted with him today.

He also added in res­ponse to the recent shor­ta­ges:  “We didn’t spare an expense to push it along”.  i.e  “Ame­ri­can Labo­ra­to­ries have caught up with all bac­kor­ders, with the excep­tion of one major com­pany which has tight spe­ci­fi­ca­tions, but they should be caught up by the first quar­ter in 2010″, explai­ned Soejoto.

So what about spe­ci­fic rumors we keep hearing??

1. My com­poun­ding phar­macy said they weren’t able to get it. Kenny explai­ned that a small com­poun­ding phar­macy often can’t afford the mini­mum order that Ame­ri­can Labo­ra­to­ries requi­res, nor does the sma­ller phar­macy want that much, which is an 110 lb drum of pow­der.  So, says Soe­joto, they need to con­tact their dis­tri­bu­tor, who is the middle man bet­ween a com­poun­ding phar­macy and Ame­ri­can Labo­ra­to­ries. “The dis­tri­bu­tor for com­poun­ding phar­ma­cies, ” explai­ned Kenny, “will buy the lar­ger amounts, make sma­ller pac­kets, and then sell those to the com­poun­ding pharmacies”.
2. Ame­ri­can Labo­ra­to­ries can’t be the only North Ame­ri­can makers of pow­de­red thy­roid because my com­poun­der told me a dif­fe­rent name. The dif­fe­rent name you heard is the middle man men­tio­ned above – a dis­tri­bu­tor for the thy­roid pow­der to the com­poun­ding phar­macy. But that dis­tri­bu­tor got their supply from Ame­ri­can Laboratories.
3. My regu­lar phar­macy said there is a supply issue for the brand I wan­ted. Again, Kenny explains there is no supply issue – they have plenty. Any phar­ma­ceu­ti­cal com­pany that makes desic­ca­ted thy­roid has to have ongoing cre­dit worthi­ness and docu­men­ta­tion before AI can sell to them. Also, we are simply expe­rien­cing con­ti­nued demand being grea­ter than supply, and it can take time to catch up.  i.e. there may be more to the story than you hear under any com­ment about a supply issue problem.

In conc­lu­sion, Kenny Soe­joto said they simply got into trou­ble from the growth of inte­rest in desic­ca­ted thy­roid the past few years, and they are much bet­ter pre­pa­red. Even Europe is inqui­ring more about it, he said. And my res­ponse to him?? Get ready, because you are doing millions of poten­tial thy­roid patients a HUGE favor by making it,  and we’re going to con­ti­nue to spread the world about natu­ral desic­ca­ted thy­roid. 

Check out posts below about other impor­tant issues, inc­lu­ding more from Erfa, plus the pro­blem of cellu­lose in com­poun­ded and regu­lar desic­ca­ted thyroid.

*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!

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!

When Forest Labs refor­mu­la­ted Armour ear­lier this year, they sta­ted they inc­rea­sed the filler Mic­rocrys­ta­lline Cellu­lose, and dec­rea­sed the Suc­rose (sugar). The tablets became impos­si­ble to do sublin­gually, and you have to won­der why they would change a qua­lity that patients prai­sed so hea­vily.  Posi­tive opi­nion among patients for Forest Labs slip­ped seve­ral notches.

But the real cuckoo’s nest for many thy­roid patients, who knew firsthand the life-changing bene­fits of natu­ral desic­ca­ted thy­roid, was a mad­de­ning return of serious hypo symp­toms on the new Armour and sub­se­quent new stress on their adre­nals, sooner…or later! You can read seve­ral horror sto­ries in the com­ments of the post below, or go here.

So patients tur­ned to other alter­na­ti­ves: Natu­reth­roid and Westh­roid by RLC Labs…then when the desic­ca­ted thy­roid shor­ta­ges hit in the Fall of 2009, Erfa’s Thy­roid, Com­poun­ded desic­ca­ted thy­roid, and others. And there have been pro­blems for some patients on most everything they switched to.  The LEAST pro­ble­ma­tic has been Erfa’s Thy­roid, and the most pro­ble­ma­tic was Compounded.

So what has been the com­mon thread in the most pro­ble­ma­tic desic­ca­ted thy­roid pro­ducts? CELLULOSE, a plant fiber, and more com­monly known by the trade name Avi­cel. And what does fiber do in your sto­mach? Inhi­bits absorp­tion. Armour’s cellu­lose was rai­sed, and bamm…problems.  Com­poun­ded desic­ca­ted thy­roid, with cellu­lose as a filler, has been pro­ble­ma­tic for many patients with a return of hypo symp­toms,  espe­cially if  it was Methyl Cellu­lose, a lar­ger par­ticle size pro­duct. But some have even had pro­blems with com­poun­ded con­tai­ning Mic­rocrys­ta­lline Cellu­lose, the sma­ller cellu­lar pro­duct. And a cer­tain body of patients even had pro­blems with Natu­reth­roid before it became scarce. And Natu­reth­roid uses cellu­lose as a filler.

Is this pro­blem true with T3-only pro­ducts? Yup. Patients have noted that gene­ric T3 is far less effec­tive than the brand name Cyto­mel (both Liothy­ro­nine Sodium)  And what filler it up to 70% in the gene­ric T3?  CELLULOSE.  See the per­cen­ta­ges here for Paddock’s gene­ric T3.

Why have less pro­blems been repor­ted with Erfa’s Thy­roid? Perhaps because it has no cellu­lose as a filler! See this list of ingre­dients, which STTM has been wor­king on lovingly for a few years.

What does lite­ra­ture say about the use of Cellu­lose as a filler in medi­ca­tions? Plenty. Cellu­lose is from wood. Wood is fiber. And fiber in your gut affects absorp­tion. From http://www.umm.edu/altmed/articles/fiber-000303.htm we get this:

* Die­tary fiber has been repor­ted to lower the blood levels and effec­ti­ve­ness of tricyc­lic anti­de­pres­sant medications…Reduced die­tary fiber intake inc­rea­sed the blood levels and impro­ved symp­toms in these patients.

* While fiber sup­ple­ments may help to regu­late blood sugar levels, they may also inter­fere with the absorp­tion of anti-diabetic medications.…Therefore, fiber sup­ple­ments should not be taken at the same time as these medications.

* Taking solu­ble fiber such as psy­llium with car­ba­ma­ze­pine (Tegre­tol), a medi­ca­tion used to treat sei­zure disor­ders, may dec­rease the absorp­tion and effec­ti­ve­ness of carbamazepine.

* Fiber in the form of pec­tin (from fruit) and oat bran repor­tedly redu­ces the body’s abi­lity to absorb cholesterol-lowering medi­ca­tions known as “sta­tins,”… and could lead to dec­rea­sed effec­ti­ve­ness of these medications.

* Fiber sup­ple­ments may reduce the body’s abi­lity to absorb digo­xin (Lano­xin), a medi­ca­tion used to regu­late heart function.

* Cli­ni­cal reports sug­gest that psy­llium or other solu­ble fibers may lower lithium levels in the blood, redu­cing the effec­ti­ve­ness of this medication.

* In one cli­ni­cal study, the fiber sup­ple­ment guar gum redu­ced blood levels of penicillin.

Cellu­lose can clearly be a pro­blem, espe­cially when it’s ratio is too high as com­pa­red to the desic­ca­ted thy­roid. So what can you do?

If you are using a com­poun­ded medi­ca­tion, strongly request pow­de­red aci­dophi­les, also spe­lled aci­dophi­lus, as your filler.  One gal sta­tes her com­poun­ding phar­macy uses pow­de­red Gin­ger (but beware of too much Gin­ger if you have Mitral Valve Pro­lapse. It can cause palps if you take too much – my expe­rience).  See what other fillers your com­poun­der can offer.

Another pos­si­bi­lity is Cellu­lase, an enzyme which helps the split­ting and break­down of cellu­lose, and which was pro­po­sed to me by Natu­ro­pathic stu­dent Stepha­nie Buist. Goo­gle “cellu­lase” and find sup­ple­ments that con­tain it.  If it looks pro­mi­sing to you, I’ll be curious to read your expe­rience with swa­llo­wing a cellu­lase sup­ple­ment, then swa­llo­wing your pro­ble­ma­tic desic­ca­ted thyroid.

And lea­ning towards Erfa’s Thy­roid can be a plus.

Have other ideas or com­ments about Cellu­lose in our desic­ca­ted thy­roid? Use the COMMENT func­tion below and let’s talk!

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.

On the August 19^th blog post, you can read about the only North Ame­ri­can manu­fac­tu­rer of natu­ral por­cine desic­ca­ted thy­roid called Ame­ri­can Labo­ra­to­ries (ALI). ALI sells to dis­tri­bu­tors who in turn pack it up in sma­ller quan­ti­ties which go to those who create desic­ca­ted thy­roid products.

I just got off the phone again from Kenny Soe­joto, the Chief Ope­ra­ting Offi­cer at ALI.  And the news couldn’t be bet­ter.  ALI is wor­king hard to catch up and is currently ship­ping to all their cus­to­mers.  Yes, they are still in a bac­kor­der situa­tion due to demand being grea­ter than supply in 2009, but work is in pro­gress, ship­ments are being made to all, and they hope to see some major catching-up in two months or so.

And his most impor­tant com­ment? “If we had FDA issues, we wouldn’t be pro­du­cing”. i.e. everything is going fine.

In the mean­time, there seems to be two areas of suc­cess right now with get­ting your desic­ca­ted thy­roid presc­rip­tion filled:  from Cana­dian phar­ma­cies, and from Com­poun­ding phar­ma­cies.  Hang in there. We’ll get past this.

Join us next Fri­day for our next thy­roid patient Com­mu­nity Call via Talk Shoe. See the blog post right below this for infor­ma­tion.  Below that is infor­ma­tion about the Coa­li­tion for Natu­ral Desic­ca­ted Thy­roid, an inde­pen­dent group wor­king along­side Mary Shomon’s efforts, as well.

*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.

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