• Coalition for Natural Desiccated Thyroid
• Patients
• desiccated thyroid
• fda

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.

Hi Mary.

You know, I really don’t think this is a time for us to be sepa­rate, Mary, in our advo­ca­cies.   Seven years ago, I went a dif­fe­rent direc­tion that I felt was impor­tant, and still strongly do, as an acti­vist.  That will con­ti­nue because I believe in what I am doing. You don’t have to agree with my stance, but we can make the choice to work together in what is com­mon bet­ween us – sup­por­ting the use of desic­ca­ted thy­roid and hel­ping others with the shortage.

As I see it, Mary, we each have a won­der­ful legacy. You will always be appre­cia­ted for your work as much as many appre­ciate my work. That will never be taken away.

So why not be uni­ted in this fight, Mary, wor­king together to sup­port patients during this shor­tage.  Thy­roid patients need us.

Janie

Jes­sica Terry is an 18 year old stu­dent at Washing­ton State high school in the Bay Area who had years of pro­blems which doc­tors couldn’t figure out: vomi­ting, diarrhea, weight loss and sto­mach pains.  Doc­tors said she had irri­ta­ble bowel syn­drome or coli­tis, and said her intes­ti­nal tis­sue was just fine accor­ding to slides.

Yet, she just knew that wasn’t correct.

So she took some of her own intes­ti­nal tis­sue to her Bio­me­di­cal Pro­blems class, and voila…she diag­no­sed her own pro­blem:  gra­nu­loma, and spe­ci­fi­cally, Crohn’s disease, an inflam­ma­tion of her intestines.

Sound fami­liar??

Yup, thy­roid patients have had to do the exact same thing – self-diagnose– for almost ten years because of con­ti­nuing symp­toms of hypothy­roi­dism which doc­tors have rou­ti­nely dis­mis­sed, pooh-poohed or bla­med on something else.  It’s all been a horri­fic, wide-reaching and dama­ging 50 year medi­cal scan­dal by the medi­cal esta­blish­ment upon thy­roid patients.

And why has this cala­mity occu­rred? Because doc­tors have always been hood­win­ked by their medi­cal school trai­ning, con­ti­nuing edu­ca­tion and Big-Pharma-financed-research in belie­ving that T4-only thy­ro­xine medi­ca­tions like Synth­roid, Levoxyl, Levothy­ro­xine, Eltro­xin, et. al. were from God Almighty, and the TSH lab test was just as holy.

And thanks to thy­roid patients around the world who had the gall to use the inter­net and join patient groups, we figu­red out it’s all because those medi­ca­tions and lab­work have not wor­ked, and what has wor­ked. Addi­tio­nally, it was patients who dis­co­ve­red they had adre­nal fati­gue and/or low ferri­tin and how to treat it, and patients who have suc­cee­ded in begin­ning a wave of change around the world in the treat­ment and diag­no­sis of hypothy­roi­dism (except for the UK, who has gone back­wards to the dark ages).

You can read Jessica’s story first repor­ted in the Sam­ma­mish Repor­ter,  and only recently repor­ted to a wider audience in the Bay Area News news­pa­per. She also spoke to a CNN affiliate.

Thanks to Kem on NTH for infor­ming me of this news.

P.S. Do ya think that any news­pa­pers or major news out­lets like CNN are going to finally get what a huge story thy­roid patients have given them?? We’re still waiting.…..

*Want to be infor­med of Janie’s blog posts? Curious what’s on her mind? Just use the Noti­fi­ca­tion link to the bot­tom left of the links.

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. 

As Susan Boyle of the UK had a dream which came true, I too wish from the dee­pest place in my heart that some­day soon, SOMEONE from the mass media will FINALLY get smart and do a wide-reaching story for the hun­dreds of millions who are still on T4 meds like Syth­roid, Levoxyl, Levothy­ro­xine, Eltro­xin, Oroxine…and who have depres­sion or a myriad of other lin­ge­ring symp­toms of a sucky, laugha­ble and sha­me­ful treat­ment.  This video ins­pi­res me today just as it did a few weeks ago.  Enjoy and dream with me. http://www.youtube.com/watch?v=bFzS0wgwyW4&annotation_id=annotation_179773&feature=iv

Janie

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

*See below on how being on T4 meds can affect your liver. And below that – why I’m han­ding my pro­mise ring back to Forest Phar­ma­ceu­ti­cals.