• Coalition for Natural Desiccated Thyroid
• desiccated thyroid
• shortages of desiccated thyroid

With all the panic among thy­roid patients of the last seve­ral weeks, we are now seeing light at the end of the current tun­nel of desic­ca­ted thy­roid shor­ta­ges. More reports are coming in by patients that it’s appea­ring on shel­ves at their local phar­ma­cies, inc­lu­ding both Armour and Natu­reth­roid. Sure, it’s a tric­kle com­pa­red to the amount of US patients that need it. But it’s a sign of hope of more to come.

On the CDT (Coa­li­tion for Desic­ca­ted Thy­roid) yahoo group, where patients have been dis­cus­sing the shor­ta­ges and fin­ding pla­ces to get their desic­ca­ted thy­roid, patient Ele­nor gave just one more example:

“After losing “my” Wal-Mart’s last left-over bottle of Natu­reth­roid to some other thy­roid per­son (lucky him or her){wink}, I called around to pharms — and Sam’s Club Pharm two towns over had just got­ten ONE bottle of 60mg Armour in yes­ter­day. (I did also find a CVS that had a bottle and a half of the 90mg Armour — so there are some dribs-and-drabs left around… My doc wouldn’t write for me to get that too…) (YAY!) Emai­led my doc’s nurse beg­ging her to do it right away — which thank­fully she did, so they dis­pen­sed it “to me” and I can pick it up today! Down to three days left in my pos­ses­sion, so … WHEW!”

Ele­nor conc­lu­ded: Still gonna see my doc 5^th Oct and try to order 500 tablets from Canada. I do not EVER want to be scram­bling like this again — for ANY reason…

And we all agree with you, Ele­nor!

Clearly, our current shor­ta­ges were cau­sed by two fac­tors: demand being grea­ter than supply thanks to web­si­tes like Stop the Thy­roid Mad­ness (STTM), forums, groups and others, as well as the remar­kably poor timing by the FDA in cau­sing the only remai­ning gene­ric makers of desic­ca­ted thy­roid to cease production.

And in case you haven’t caught up with what’s going on, you can read a sum­mary of the his­tory about the FDA and regu­la­tions which will explain what we will have to face for desic­ca­ted thy­roid in the future, which is our real challenge.

**JOIN US TONIGHT for our weekly THYROID PATIENT COMMUNITY CALL hos­ted by Janie Bowthorpe. We’ll have an open topic night and perhaps a sur­prise guest (still wai­ting on con­fir­ma­tion on that). Let’s talk about the shor­ta­ges, ways to con­ti­nue trea­ting during this time, and more. NOTE that I have moved up the times by one hour. Just click on the link and you’ll see a count­down of when it starts: 6 pm Paci­fic, 7 pm Moun­tain, 8 pm Cen­tral and 9 pm Eastern.

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.

Oh boy! You are invi­ted to a Thy­roid Patient Com­mu­nity Call on your com­pu­ter which will be held each and every Fri­day night for an hour with myself, Janie, as host.  We had the first one last Fri­day and it was fun and infor­ma­tive. No, I didn’t announce it here because I wan­ted to work on any bugs in the sys­tem as we lear­ned to use it.

Here’s a chance to ask ques­tions about shor­ta­ges of desic­ca­ted thy­roid, options to talk to your doc­tor about to treat your hypothy­roi­dism during this shor­tage period, how to find a good doc­tor, and more.

Times are 7 pm Paci­fic, 8 pm Moun­tain, 9 pm Cen­tral and 10 pm Eas­tern. Just go here: http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc

You can make two choi­ces: just lis­ten to the Audio of the pod­cast talk show, or call in. Phone num­ber will be right on the bot­tom.  You can regis­ter with Talk Shoe and pick a user name, or come in as a Guest.

You’ll also note a chat box.  The handy and beau­ti­ful gals Darla and Diane will usually be there to guide you. If you want to line up to talk in the queue, you’ll be asked the topic of your con­ver­sa­tion in the chat box.  As you wait for me to get to you, you’ll be able to hear the talk through your phone, and will need to MUTE your com­pu­ter sound.

You’ll be seeing guests join us, as well, so watch for each Com­mu­nity Call announ­ce­ment on the above link. And even without a sche­du­led guest, you just never know who is going to pop in and chat.

Come join us! And remem­ber: we are all just patients chat­ting with patients. This is not to replace the rela­tionship with your doc­tor in your treat­ment or for treat­ment advice. Stick with your doc­tor for that.

*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.

* STTM t-shirts are half price! I love sales!

Wish you could talk to others about rele­vant facts con­cer­ning the current shor­tage, the FDA’s actions with Time Caps Labs, DESI and the New Drug Appli­ca­tion, cli­ni­cal trials, and rela­ted con­cerns? Have impor­tant infor­ma­tion to share?

A new group has just been crea­ted to work along­side other groups, inc­lu­ding save natu­ral thy­roid. Smartly called the Coa­li­tion for Natu­ral Desic­ca­ted Thy­roid, it  repre­sents unity of con­cern and is crea­ted for patients, advo­ca­tes, medi­cal pro­fes­sio­nals, repre­sen­ta­ti­ves of phar­ma­ceu­ti­cals who manu­fac­ture desic­ca­ted thy­roid, or anyone with an inte­rest in the four aims of this group:

1) Sha­ring of fac­tual infor­ma­tion con­cer­ning natu­ral desic­ca­ted thy­roid
2) Dis­cus­sion of current issues rela­ted to desic­ca­ted thy­roid
3) Unity among all con­cer­ned
4) Coor­di­na­tion of grass­roots action where needed.

The dis­cus­sion, sup­port and action of this group does not limit itself to any one group, advo­cate, web­site or forum, and wel­co­mes any men­tion of infor­ma­tion from web­si­tes, advo­ca­tes, medi­cal pro­fes­sio­nals or etc. which/who post about or have the same con­cerns as the aims above.

Join the group here: http://health.groups.yahoo.com/group/CoalitionForDesiccatedThyroid