endocrinologist tags

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!

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).

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.

The sub­ject line of this post was just given to me in an email by a wise and cau­tious per­son. And I agree with it.

We have facts. We know that Time Caps Labs can­not make desic­ca­ted thy­roid. We have read, without seeing the actual press release, that Major Phar­ma­ceu­ti­cals has been told to stop. I’d sure like to see this release.…

We know that Armour didn’t work well for most and became hard to find. We also know from RLC, makers of Natu­reth­roid, that there is at least a 3 month backorder.

And, we know from Ame­ri­can Labo­ra­to­ries that they are making the pro­duc­tion of desic­ca­ted thy­roid pow­der their #1 prio­rity. Demand was grea­ter than supply.

But beyond that as I write this, we know no more. And to spe­cu­late in only a nega­tive direc­tion can be a disas­ter. To march with our pitch­forks and torches is only shi­ning a spot­light in the direc­tion of the FDA, and they may not be friendly.

There are posi­ti­ves. ERFA has allo­wed us to order their Cana­dian thy­roid. There are other sour­ces out there which I have men­tio­ned below, as has health wri­ter Mary Shomon.

And there are other facts: hun­dreds of thou­sands of us, if not into the millions, KNOW that desic­ca­ted thy­roid really is safe and VERY effec­tive. We KNOW that endoc­ri­no­lo­gists are totally wrong in their opinions.

So, what you can do is put empha­sis on the lat­ter FACT of effec­ti­ve­ness when it comes to you. Write your story.  Give a ““before on T4 and an “after on Desic­ca­ted thy­roid”. Then send it to me for the Sto­ries of Others page. IF.….and I say IF.…something dras­tic hap­pens from the FDA, we then start pro­vi­ding out tes­ti­mo­nies and do what we need to do…one after the other after the other. That is our strength.  Facts, con­cern, but not panic­king and carr­ying pitch­forks and torches which may back­fire on you. This is not yet the time, if it even passes.

Janie

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

*Spread the word! STTM t-shirts are now 50% off.

Funny how things work. I had been won­de­ring what the heck was going on with thy­roid patients in the UK after the Royal College of Phy­si­cians (RCP) came out with their February 6^th gui­de­line sta­ting that 1) thy­ro­xine was the only medi­ca­tion nee­ded for hypothy­roi­dism, 2) “natu­ral” medi­ca­tions were dan­ge­rous and 3) the only labs nee­ded are the TSH and T4.

All the above goes totally against the life-changing expe­rience of a gro­wing body of patients.

Equally a part of this B-grade horror movie is the stand taken by the Bri­tish Thy­roid Asso­cia­tion (BTA).  Read it. And UK-TPA thy­roid patient advo­cate Sheila Tur­ner began to go through her own hell when her Armour was taken away, which you can read about in the February 20^th blog post here.

And sud­denly, I get an email from Sheila, infor­ming me that the RCP stand is as bad as it was three months ago for her and other thy­roid patients.

Sheila sta­tes: This is abso­lu­tely unbe­lie­va­ble that out of the hun­dreds of refe­ren­ces we sent to the Royal College of Phy­si­cians to show their gui­de­line to be fla­wed, they have taken no account of one sin­gle one of them. They are publishing their pre­vious gui­dance without one since change. The world has gone mad.

Dear Sheila, Further to my email of 6 April, the com­ments and mate­rials recei­ved by the College have been revie­wed. This posi­tion sta­te­ment or gui­dance (not a gui­de­line) was pro­du­ced on behalf of the Royal College of Phy­si­cians, in par­ti­cu­lar its Patient and Carer Net­work and the Joint Spe­cialty Com­mit­tee for Endoc­ri­no­logy and Dia­be­tes; the Asso­cia­tion for Cli­ni­cal Bioche­mistry; the Society for Endoc­ri­no­logy; the Bri­tish Thy­roid Asso­cia­tion; the Bri­tish Thy­roid Foun­da­tion Patient Sup­port Group and the Bri­tish Society of Pae­dia­tric Endoc­ri­no­logy and Dia­be­tes and is endor­sed by The Royal College of Gene­ral Prac­ti­tio­ners. The Pre­si­dent has asked me to let you know that this review has not resul­ted in any chan­ges to that sta­te­ment.  It should be noted that it is about the treat­ment of pri­mary hypothy­roi­dism and does not prec­lude other treat­ments for excep­tio­nal cases by spe­cia­list endoc­ri­no­lo­gists who can make clear to patients any asso­cia­ted risks. Refe­ren­ces sup­por­ting the sta­te­ment are lis­ted below. Yours sin­ce­rely, Catha­rine Perry Admi­nis­tra­tor •   Diag­no­sis and treat­ment of pri­mary hypothy­roi­dism. BMJ 2009;338:b725 •   Vaidya B, Pearce S. A Cli­ni­cal Review of the mana­ge­ment of hypothy­roi­dism in adults. BMJ 2008;337:a801. This con­tains refe­ren­ces for 35 artic­les and sta­tes that Armour thy­roid is of no pro­ved addi­tio­nal bene­fit to levothy­ro­xine. • The Lan­cet Volume 363, Issue 9411, Pages 793 — 803, 6 March 2004.  This covers the his­tory, epi­de­mio­logy, pathophy­sio­logy, and cli­ni­cal diag­no­sis and mana­ge­ment of hypothy­roi­dism and is writ­ten by Caro­line GP Roberts and Paul Laden­son of Johns Hop­kins Uni­ver­sity School of Medi­cine, Bal­ti­more, USA.  This review, which refe­ren­ces 164 cli­ni­cal artic­les, sta­tes that the treat­ment of choice for hypothy­roi­dism is levothy­ro­xine sodium (thy­ro­xine) and does not refer to Armour thy­roid. •  Baloch Z, Cara­yon P, Conte-Devolx B, et al. Labo­ra­tory medi­cine prac­tice gui­de­li­nes. Labo­ra­tory sup­port for the diag­no­sis and moni­to­ring of thy­roid disease.Thyroid 2003;13:3 – 126. •  Asso­cia­tion of Cli­ni­cal Bioche­mists BTA, Bri­tish Thy­roid Foun­da­tion. UK Gui­de­li­nes for the use of thy­roid func­tion tests. http://acb.org.uk/docs/tftguidelinefinal.pdf •  Surks MI. Ortiz E, Daniels GH, et al. Subc­li­ni­cal thy­roid disease: scien­ti­fic review and gui­de­li­nes for diag­no­sis and mana­ge­ment. 2004;291:228 – 238.

And as your peruse the six refe­ren­ces above which they use to defend their tunnel-visioned, moro­nic posi­tion, you rea­lize that you, your words, and your positive-outcome expe­rience on desic­ca­ted thy­roid, as well as the use of far bet­ter labs, is about as impor­tant within the UK’s latest medi­cal pro­noun­ce­ment as is dirt on the bot­tom of a rus­ted buc­ket in the middle of an empty field in nowhere. Yup.

Or as Harold Ship­man sta­ted about the RCP’s gui­de­li­nes: What a bri­lliant wheeze.

******************************************

See below on the poten­tial impor­tance of potas­sium in your health and well-being. And on the May 7^th post about the party being over with Forest Phar­ma­ceu­ti­cals, com­ments con­ti­nue to come in about expe­rien­ces with the “new” Armour.