t4 tags

Anyone who lis­te­ned to the Thy­roid Patient Com­mu­nity Call last night will know that we were lis­te­ning to a powerhouse of a man with an encyc­lo­pe­dia of valua­ble infor­ma­tion: Dr. John C. Lowe.

He is the author of an exhaus­tive book on Fibrom­yal­gia called The Meta­bo­lic Treat­ment of Fibrom­yal­gia, which explains how the pro­per diag­no­sis and treat­ment of hypothy­roi­dism is a good choice in the treat­ment of fibro. He also owns drlowe.com and the research web­site Thy­roid Science.

I already knew he was great. He’s lis­ted in the Ack­now­led­ge­ments of the Stop the Thy­roid Mad­ness book as one of a hand­ful of medi­cal pro­fes­sio­nals who pla­yed a huge role in edu­ca­ting and empo­we­ring patients all these years.  He, like the others, was a spring­board for patients to move for­ward in gai­ning far bet­ter infor­ma­tion about thy­roid treat­ment and everything else we have have lear­ned over the years!

And he has agreed to come back, since we had many more ques­tions to ask him! I’ll announce that when we secure a date.

Below are some high­lights from our talk with Dr. Lowe:

1. The use of high dose B-vitamins is very impor­tant for the thy­roid patient, and even more so when you are fee­ling bet­ter in your treat­ment. Thy­roid inc­rea­ses the pro­duc­tion of pro­tein, which dri­ves energy, and you’ll need the B’s to help this higher energy production.
2. Sadly, it’s eco­no­mics which domi­nant science and and researching, and it’s all for mar­ke­ting pur­po­ses ins­tead of the pur­suit of truth and the real health of patients.
3. What dri­ves your medi­cal inves­ti­ga­tions? To gain wealth, or to help patients?
4. 75% of the time, if a doc­tor uses the TSH to either diag­nose hypo or treat it, he will be wrong.
5. In the 1980’s, the top of the TSH range was 7.5.
6. Abbott Labs, the makers of Synth­roid, gives one million dollars in an unres­tric­ted edu­ca­tio­nal grant to the Ame­ri­can Asso­cia­tion of Cli­ni­cal Endoc­ri­no­lo­gist (AACE) i.e. no won­der Endoc­ri­no­lo­gists have a love affair with Synth­roid, a medi­ca­tion like other brands which has left the vast majo­rity of us under­trea­ted. You can read more details from Lowe on this sub­ject here.
7. Iso­cort, an OTC treat­ment for low cor­ti­sol, is pro­tec­ted by the 1994 Die­tary Sup­ple­ment Health and Edu­ca­tion Act.
8. HC, aka hydro­cor­ti­sone, is water solu­ble. Iso­cort is fat solu­ble. Peo­ple need bile so the lipase enzy­mes are able to work on it.
9. There are no stu­dies to com­pare Iso­cort to HC, and should be.
10. If swa­llo­wing, take thy­roid one hour before eating for best absorp­tion. If meal will have a lot of fat, 3 – 4 hours before eating.
11. Elderly peo­ple have less Hydroch­lo­ric Acid and do a worse job absor­bing nutrients. (And so do under­trea­ted hypo patients, remin­ded Diane)  Betaine is a good sup­ple­ment to help.
12. Why it can be a bad idea to swa­llow thy­roid with meals: we never know how many com­pounds are in the food that will bind it, like cal­cium and iron.  T4 is the most badly absorbed.

To hear more, just click above and lis­ten to the recor­ded call. Thank you for being you, Dr. John C. Lowe.

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

BRRRRR. In the US and many other coun­tries,  we are having one of the col­dest win­ters we’ve seen in a long time. And if you are out in it alot, you may need a tad more thy­roid meds to keep your­self optimal.

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.

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

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!

Yes, we’ve all heard about T4 (the thy­roid sto­rage hor­mone) and T3 (the active thy­roid hor­mone which rids us of hypothy­roid symp­toms). We’ve lear­ned that the body not only con­verts T4 to T3, it also pro­vi­des some of  T3 directly. The lat­ter fact is why patients have found natu­ral desic­ca­ted thy­roid like Natu­reth­roid, Erfa’s Thy­roid, etc. to be a far bet­ter treat­ment for hypothy­roi­dism, besi­des the T2, T1 and cal­ci­to­nin you’ll also find in desic­ca­ted thy­roid – just like your own thy­roid would be making.

But in every indi­vi­dual, a thy­roid also con­verts T4 to the inac­tive RT3 (reverse T3) as a way to clear out excess T4 that the body doesn’t need.  It’s natu­ral and neces­sary. It will espe­cially hap­pen if you go through sur­gery or a diet.

Unfor­tu­na­tely, many thy­roid patients make far too much RT3, and patients have been making cut­ting edge dis­co­ve­ries about this fact and how to treat it with their doc­tors.  High levels of RT3 can be found if you have high cor­ti­sol, low cor­ti­sol, low ferri­tin, low B12 and other undis­co­ve­red and untrea­ted underl­ying issues that can go hand-in-hand with being hypothyroid.

Why is a high level of RT3 is pro­blem? That excess RT3 is making itself lazily com­for­ta­ble on your cell recep­tors, pre­ven­ting T3 from gai­ning access to your body.  It beco­mes like a clog­ged up drain to your body. So you stay hypo and symp­to­ma­tic, in spite of see­mingly nor­mal labwork.

This coming THURSDAY, NOVEMBER 19^th (tomo­rrow as I write this) on the TALKSHOE THYROID PATIENT COMMUNITY CALL, we’re going to talk about the Reverse T3 pro­blem with thy­roid patient advo­cate Vale­rie Tay­lor. She not only owns the NTH Adre­nals group (and is con­si­de­red the most know­led­gea­ble patient on adre­nal fati­gue in the world), she also crea­ted the RT3/T3  group on Yahoo, which you will find on the Talk To Others page.

We’ll talk about excess RT3, symp­toms that can go along with it, how to do lab­work to deter­mine if you have this pro­blem, how to treat it with T3-only, and more. There’s a Chat Box you can par­ti­ci­pate in while the show is going on. Audio will come directly out of your com­pu­ter, and you can call in and ask Vale­rie or Janie a ques­tion. Times are 6 pm Paci­fic, 7 pm Moun­tain, 8 pm Cen­tral and 9 pm Eastern.

Want to read more? Thy­roid patient Nick Foot, who also mode­ra­tes the RT3/T3 group, has crea­ted an exce­llent Ques­tion and Ans­wer RT3 web­site. This will make you even more infor­med before this Talkshoe event. Note that the web­site is still work-in-progress, so expect to see more as he works on it.

For those with the Stop the Thy­roid Mad­ness book, there is also more good detail in Chap­ter 12 called T3 is the Star of the Show, page 155. This is all good infor­ma­tion to take into your doctor’s office.

Update: cellu­lose in our desic­ca­ted thy­roid meds may be much more of a pro­blem than we ever ima­gi­ned. See my blog post below.

*HO HO HO! Have a STTM book sent to someone  you care about as a CHRISTMAS or HOLIDAY pre­sent. All the work is done for you!

(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?