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Is there a genetic reason many of us do lousy on T4?

deiodinase2Last 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?  :lol: 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.

What the recent Medco scandal is actually telling us – i.e. there’s more to this story

medcoI 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?

The intrusion of reality about levothyroxine and depression

depressiont4I’ve been peru­sing com­ments in res­ponse to the UK’s Royal College of Phy­si­cians blun­de­ring and dark-age-constructed Diag­no­sis and treat­ment of pri­mary hypothy­roi­dism.  And though all com­ments are quite good and worth your read, I was struck by the com­ment tit­led May Rea­lity Intrude? by a man named Char­les.

Char­les explains that in 1999, his 67-year-old wife had RAI (radioac­tive iodine) and was then put on levothy­ro­xine, a T4-only medi­ca­tion (aka Synth­roid, Levoxyl, Eltro­xin, Oro­xine, levothy­ro­xine, et al).  And not long after, she com­plai­ned of having depression. 

He had an idea why after rea­ding the New England Jour­nal of Medi­cine about T3, and pro­cee­ded to buy her Armour off the inter­net.  Without her kno­wing, he switched medi­ca­tions. Lo and behold, he sta­tes “she promptly retur­ned to her usual sunny dis­po­si­tion”. Her phy­si­cian knew nothing of the switch either, and found nothing to be con­cer­ned about in her.

Char­les then explai­ned how, at age 74 in 2007, she was near death thanks to an ulcer bleed.  And to con­ti­nue trea­ting her hypothy­roi­dism, the hos­pi­tal gave her levothy­ro­xine all over again.  Back came her depres­sion and a fee­ling of wan­ting to go home and die. 

So Char­les brought her Armour to the hos­pi­tal, and though her phy­si­cal state was depres­sing enough, her sunny dis­po­si­tion retur­ned.  And that happy spi­rit while still on Armour con­ti­nues today after a full reco­very.

And Char­les pon­de­red. If his wife had been in a NHS (Natio­nal Health Ser­vice) hos­pi­tal under the care of a so-called thy­roid spe­cia­list of the NHS, would she have fai­led to obtain T3 and ins­tead, sent to a psychia­trist as if her depres­sion had nothing to do with her levothy­ro­xine trea­ted hypothy­roi­dism – the very treat­ment that the Royal College of Phy­si­cians has a dog­ma­tic love affair with?

He then conc­lu­des: My wife’s depres­sion was obvious. Since she is equip­ped with much the same assort­ment of body parts and asso­cia­ted phy­sio­logy as others, is it not likely that many levothyroxine-treated patients suf­fer from less-noticeable depression? 

Well Char­les, most any thy­roid patient who deci­des to res­pond to this will tell you une­qui­va­cably YES, YES, YES.  Because there’s no research, study or direc­tive that is more pro­found and telling than the actual EXPERIENCE of patients all over the world with T4 treat­ment and depression…besides a slew of other side effects of con­ti­nuing hypothy­roi­dism on T4-only meds.

Did you have depres­sion on a T4 med? Tell us about your expe­rience in the Com­ments sec­tion of this post.

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

*Scroll down to the June 2nd post and report your expe­rience on the newly for­mu­la­ted Armour. It’s not a happy pic­ture.

Thyroid Patients sending a big KISS to this British Doctor!

kiss2

I recently dis­co­ve­red a very humo­rous and appropo medi­cal blog on the net, writ­ten by a Uni­ted King­dom Gene­ral Prac­ti­tio­ner who wisely stays incog­nito. His blog is called The Job­bing Doctor.

And his most recent and humo­rously bri­lliant post is tit­led Hairy legs are bet­ter than blood tests! He desc­ri­bes his occa­sio­nal con­fu­sion when blood tests don’t agree with the patients symptoms.

Says the UK doc: “The text­books teach that the level of cir­cu­la­ting thy­roid hor­mo­nes (which are called T3 and T4) are inver­sely rela­ted to the Thy­roid Sti­mu­la­ting Hor­mone (TSH). If your T3 and T4 are low, your TSH will be high: this sug­gests an unde­rac­tive thy­roid gland. If the T3 and T4 are high and the TSH is low, then you have an ove­rac­tive thy­roid gland. That’s easy, huh!”

But his con­fu­sion sprang forth when a patient’s labs sho­wed “a highish TSH, T4, and a nor­mal T3.” Yet appa­rently her symp­toms didn’t imply there was any pro­blem, so he chose to do nothing as far as chan­ging her treatment.

A month later at her next appoint­ment, this patient expres­sed her appro­val that he didn’t change anything…because her leg hair and eye­brows were coming back.

And his conc­lu­sion?  “Pah! Who needs blood tests!” 

Job­bing Doc­tor, you are dis­co­ve­ring what thy­roid patients have been lear­ning over and over for years: it’s SYMPTOMS (or lack up) which need to pull the cart, NOT lab­work. Sure, we love our lab­work. They can give clues to areas where our bodies are screa­ming for help.  But they defi­ni­tely do NOT tell the whole story.

Look at the igno­ra­mus TSH lab test. Count­less patients have wal­ked into their doc­tors offi­ces with clear and obvious hypothy­roid symp­toms – and des­pe­rate for a diag­no­sis – yet the ink spot on the office piece of paper called the TSH lab result proc­laims they are “nor­mal”. And that dubious “nor­mal” diag­no­sis can go on for years before it rises high enough to reveal what was already there by SYMPTOMS.

Or, while on thy­roid medi­ca­tion, patients will have a lame­brain “nor­mal” TSH lab result, yet will con­ti­nue to have their own brand and degree of con­ti­nuing hypothy­roid symp­toms which the clue­less doc­tor dis­mis­ses as an hys­te­ric female inter­pre­ta­tion, motherhood, stress, a need for psycho­lo­gi­cal help.…or just “something else”. Uh huh.

In fact, Job­ber Doc­tor, patients have lear­ned that when they are opti­mal (on desic­ca­ted thy­roid), along with opti­mal ferri­tin and cor­ti­sol), they will gene­rally have a free T3 in the upper part of the range, and a SUPPRESSED TSH, with no symp­toms of hyperthy­roi­dism.  That is gene­ral, and there can be some excep­tions, but ove­rall, it has spo­ken volu­mes to patients on how ina­de­quate thy­roid lab tests can be.  i.e. being in the “nor­mal” range — anywhere in the nor­mal range – can be mean squat.

Thanks for a great post,  UK Job­ber Doc. And P.S.  Desic­ca­ted thy­roid is an even bet­ter treat­ment than thy­ro­xine. :)

*Want to be infor­med of these blog posts? Curious what’s on my mind? Just use the Noti­fi­ca­tions at the bot­tom left of the links. 

UK celebrities with thyroid cancer or disease

clareblading1Thy­roid pro­blems have become rampant.

And it’s not just in the US with indi­vi­duals like Oprah, fit­ness guru Jillian Michaels, Sex and the City’s Kim Cat­trall, George and Bar­bara Bush, Kelly Osbourne and others.  A recent article in the Daily Mail-UK high­lights the saga of  Clare Bal­ding, the BBC TV sports pre­sen­ter in the UK whose thy­roid was gladly remo­ved due to a malig­nant tumor.

Even the gal who wrote the well-written article about Clare, Pippa Jolly, reports having gone through the same remo­val 13 years pre­vious due to an extreme case of Hashi­mo­tos and a nodule pres­sing against her trachea.

But within the infor­ma­tive and hope­ful tone of the article are a few Rod­ney Dan­ger­field thuds of the con­ti­nuing SCANDAL and idiocy of a par­ti­cu­lar thy­roid treat­ment which even the most inno­cent of article wri­ters can be fooled.

Thud #1: The very first sen­tence of the article says: Some good news for Clare Bal­ding, the BBC TV sports pre­sen­ter, is that her recent ope­ra­tion to remove her can­ce­rous thy­roid gland — a thy­roi­dec­tomy — should be the end of the matter.

End of the mat­ter? Only if she had been put on desic­ca­ted thy­roid like Natu­reth­roid, et al. Because it appears she’s on the delight­fully enchan­ting synthe­tic “thy­ro­xine”, the dar­ling of most UK doc­tors and which ser­ves to leave almost ever­yone with their own brand and inten­sity of con­ti­nuing hypothy­roid symp­toms.  You can lis­ten to my audio here about T4.

Thud #2: Diag­nos­tic rates are on the inc­rease, says Pro­fes­sor Mon­son, as thy­roid tests are now done rou­ti­nely at GP sur­ge­ries. ‘As a result there is a higher detec­tion rate and the disease can be tac­kled ear­lier and if neces­sary follo­wed up by surgery.

Right. Those inc­rea­sing diag­nos­tic rates, some which are based on the lousy TSH lab test, are ove­rri­dingly catching someone’s hypothy­roid state years after it star­ted, which lea­ves a cer­tain per­cen­tage with the misery of adre­nal insuf­fi­ciency and host of other pro­blems from being undiag­no­sed so long.  And if one is trea­ted after sur­gery based on the same holy TSH, you will only con­ti­nue to have your brand of con­ti­nuing symp­toms. You can lis­ten to my audio on the TSH here.

Thud #3: If the thy­roid is remo­ved or not func­tio­ning pro­perly, thy­ro­xine will need to be taken in drug form for life. 

You and millions of others have been hood­win­ked into thin­king it’s thy­ro­xine you will need the rest of your life, aka Eltro­xine, Synth­roid, or levothy­ro­xine,  et al.  But those T4 meds force you to depend on con­ver­sion alone, a pro­cess not well done in many, and you miss out on what natu­ral desic­ca­ted thy­roid would be giving you as a much wiser treat­ment–exactly what your own thy­roid gives: direct T4, T3, T2, T1 and cal­ci­to­nin. Or even at the VERY least, giving your­self synthe­tic T4 with synthe­tic T3.

Thud #4: Now I have to have my hor­mone levels chec­ked every three months and make sure I take my medi­ca­tion, but other­wise I feel fine. 

I com­ple­tely believe Pippa when she says she feels fine. But I want to warn her:  some CAN feel fine on a T4-only medi­ca­tion, but even­tually and espe­cially as she ages,  she’s going to have to watch out for those pesky little demons of being on an infe­rior, ina­de­quate medi­ca­tion, which can inc­lude rising cho­les­te­rol, chro­nic low-grade depres­sion, rising high blood pres­sure, or a host of other symp­toms which are indi­vi­dual to each per­son on thyroxine.

Here’s hoping Clare and Pippa join the gro­wing body of patients all over the world whose lives are being chan­ged thanks to natu­ral desic­ca­ted thyroid.

*Want to be infor­med of these blog posts? Curious what I’m ran­ting about now? Use the Noti­fi­ca­tions on the lower left of the links.