westhroid tags

A press release just came out sta­ting that the U.S. Food and Drug Admi­nis­tra­tion (FDA) has “unvei­led the first phase of its Trans­pa­rency Ini­tia­tive which is desig­ned to explain agency ope­ra­tions, how it makes decisions, and the drug appro­val process.”

Of course, this doesn’t mean thy­roid patients can stop what seems like an inane deci­sion to require makers of desic­ca­ted thy­roid to “prove” , via expen­sive cli­ni­cal trials, that it’s a safe and effec­tive medi­ca­tion. RLC Labs, for exam­ple, the makers of Natu­reth­roid and Westh­roid, will be affec­ted.  Over 110 years of patient use, with 70 years by RLC, cer­tainly reveal it’s a safe and effec­tive treat­ment. But at least this trans­pa­rency ini­tia­tive will “poten­tially”  give us bet­ter infor­ma­tion about the pro­cess. We’ll see.

About the upco­ming Part 2 with Dr. Lowe (see the blog post right below this): Some folks were boo­ted off last Thurs­day and had to quickly get back on. The pro­blem is when you get back on, you may lose your abi­lity to chat.  i.e. the sys­tem stops the chat abi­lity once there are 300 indi­vi­duals already on the chat.  You can lis­ten, but you can’t chat after 300 are on.

So there are three things you can do to pre­vent being boo­ted off and having to get back on:  first, make sure you have clo­sed anything else on your com­pu­ter – i.e only Talkshoe should be up. Second, make sure no other pro­grams are run­ning in the back­ground, or will come on, like your anti-virus, and 3) ahead of time, down­load Live Pro from Talkshoe and use that. It’s more stable.

I, in turn, will be doing a stra­tegy to strengthen this call from boots.  Addi­tio­nally, if neces­sary, some who aren’t chat­ting out of the first 300 will have their option chan­ged to no-chat to allow those who came in lat­ter to do it.  It’s not per­so­nal because I don’t know who a lot of you are. It’s just sprea­ding the abi­lity into the call.

Do you take regu­lar aspi­rin? Just as we warn about swa­llo­wing your meds when you have just eaten anything with cal­cium, iron or estro­gen (they bind the thy­roid hor­mo­nes), you need to be aware that aspi­rin can have a nega­tive affect on your thy­roid levels, as well.  i.e. though it may help lower high thy­roid levels, it’s not good for your thy­roid treat­ment if you regu­larly take it.

How did we get to where we are with the FDA’s actions towards desic­ca­ted thy­roid today? Go here.

There was a time when I thought being hypo without a thy­roid was really no dif­fe­rent than being hypo with one.  Hypo is hypo.

But I was wrong. There really is a dif­fe­rence in our jour­neys – even if we both end up with hypothy­roi­dism — and four strong ones:

1. It’s no pic­nic to lose one’s thy­roid. Sur­gi­cal remo­val, called a thy­roi­dec­tomy,  can come with neck sore­ness, loss of one’s voice, and other com­pli­ca­tions. inc­lu­ding the loss of parathy­roids.  Treat­ment with RAI, or Iodine 1 – 131 to kill the thy­roid, has it’s own life­long side effects, inc­lu­ding gas­troin­tes­ti­nal issues, paro­tid sali­vary gland pro­blems, and more.  A good web­site about the con­tro­versy of RAI is atomicwomen.org.
2. The stress of sur­gery and/or RAI can do a num­ber on one’s adre­nals. I sus­pect that there is a high per­cen­tage of those who had sur­gery and/or RAI who also have adre­nal fati­gue with it’s night­ma­rish side effects, whether simply from the phy­si­cal stress of remo­val and/or treat­ment, or having a Synth­roid, T4-only obses­sed doc­tor.  Being on T4 is the num­ber one pre­dic­tor of adre­nal fatigue.
3. Some have a uni­que anguish about their vul­ne­ra­bi­lity. No one can live without a thy­roid.  And that thought with the abso­lute life­long depen­dency on thy­roid meds is not a com­for­ta­ble state.
4. Life long regret can be huge. Many patients came to rea­lize, after remo­val, that they may not have nee­ded the remo­val at all if they had known about the fallacy of the TSH lab test, or the idiocy of T4-only meds, or poten­tial bene­fits of iodine, or natu­ral desic­ca­ted thy­roid like Natu­reth­roid, com­poun­ded, or Erfa Thyroid.

Read the latest per­so­nal and gut-wrenching blog post by thy­roid can­cer Stepha­nie Buist, who is thy­roid­less after treat­ment for thy­roid can­cer nearly 10 years ago.  Also see the Talk to Others link below to find the Thy­roid­less yahoo group.

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Curious what’s going on with Natu­reth­roid or Westh­roid pro­duc­tion and avai­la­bi­lity? RLC Labs has a Patient Infor­ma­tion Line you can always call for the latest infor­ma­tion on Natu­reth­roid and Westh­roid avai­la­bi­lity: 877 – 600-4752.

Want to write a post for the STTM blog?? Begin­ning in 2010, I will be revie­wing and accep­ting “thy­roid patient guest posts” on the STTM blog in bet­ween my own. You can read about it here: www.stopthethyroidmadness.com/writing-a-guest-blog-post-on-sttm/

Want to honor someone who has hel­ped you?? See the blog post below and thank someone.

NOTE: if you were recei­ving email noti­fi­ca­tions about these posts,  the com­pany doing them is out of busi­ness. Ins­tead, use an RSS Feed.

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!

(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?