thyroid disease tags

Please note: Dr. Lowe is NOT an MD or DO who see’s patients and can presc­ribe. He’s a thy­roid and fibro “researcher” with good know­ledge about T3,  fibro, meta­bo­lism, sup­ple­ments etc. Many ques­tions have been coming in which are already ans­we­red on STTM, or are more tar­ge­ted to a prac­ti­cing phy­si­cian, not a researcher. FYI.

On the heels of an infor­ma­tive and won­der­ful THYROID PATIENT COMMUNITY CALL on Talkshoe last week with Dr. John C. Lowe (see posts below), we’re going to do it again this coming Thurs­day, January 14^th.  Join us for Part 2!

Dr. Lowe is a fibrom­yal­gia, thy­roid, and meta­bo­lism researcher who has always been such a cham­pion for bet­ter diag­no­sis and treat­ment in thy­roid patients. He is Editor-in-Chief of the open access jour­nal www.thyroidscience.com as well as his own www.drlowe.com

And this time, Dr. Lowe is going to spend more time ans­we­ring  your spe­ci­fic ques­tions. Check out his web­si­tes above to get an idea what his exper­tise is, which inc­lu­des the use of T3,  Hashi­mo­tos autoim­mune thy­roid disease, iodine, fibrom­yal­gia, the tyranny of the TSH lab test, good sup­ple­ments, the FDA, and more.

So here’s your chance: think of one or two ques­tions you’d like to hear him ans­wer. Please, if you have more more than two,  narrow them down to the two most impor­tant, and keep them brief.  No excep­tions. Two max only, and brief.  Then use the Com­ments below to post them.  Be sure and check out if your ques­tions have already been asked in other comments.

I’ll be collec­ting the ques­tions ahead of time and will let him pre­view them. He wants to give you his best.

TIPS ABOUT TALKSHOE: Some repor­ted being boo­ted off and having to quickly rejoin. One step that may help is to down­load the Talk Shoe Live Pro ahead of time (takes 25 minu­tes for some) and use that soft­ware during the call, since it gives you far more sta­bi­lity.  Also, make SURE you have everything else clo­sed and/or not run­ning on your com­pu­ter at the same time you are in the Talkshoe call. I will also be chat­ting with Talkshoe sup­port and will get more ideas.

Also, don’t wait until the call occurs to men­tion your ques­tion. We found it dif­fi­cult to try collec­ting them on the Chat. Ask now!!

Yes, you can also call in live during the Call, but it’s good to first let me know your ques­tion here.

And finally, at a cer­tain point of those who join (after 300 on chat), Talkshoe par­ti­ci­pants are auto­ma­ti­cally una­ble to post on the chat. You can lis­ten, but no chat­ting. So if you want to chat, join as soon as the Call opens up, which is 15 minu­tes before the actual audio begins. Times for the audio are 9 pm Eas­tern, 8 pm Cen­tral, 7 Moun­tain, and 6 pm Pacific.

The Stop the Thy­roid Mad­ness Talkshoe page: http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc

********************
See the blog post below those about Lowe for a very insight­ful Guest Blog Post by Amy about her role as an Under­co­ver Thy­roid Advo­cate. Below that, you can read how I was wrong about what it was like to be thy­roid­less, and seve­ral great comments.

The news this mor­ning about Oprah made me pause.

Yes, it’s being announ­ced today that there will be no more Oprah Win­frey Show on CBS after Fall of next year.  She’s saying goodbye. And the rumor is that she will move her talk show to The Oprah Win­frey Net­work, which repla­ces the Dis­co­very Health Chan­nel. We’ll see when she for­mally announ­ces it today on her show.

But the change sure does shine a bright spot­light on a colos­sal and com­plete fai­lure by Oprah and The Oprah Win­frey Show for hun­dreds of millions of thy­roid patients. Though she had her own bout with thy­roid disease (and may still be dea­ling with it when you con­si­der her weight issues), we all win­ced a year ago when she sta­ted that a month long Hawaiian vaca­tion and eating fresh foods with soy milk (a goi­tro­gen) were a great way to treat her thy­roid con­di­tion. Yikes.   We equally squir­med in our seats when Dr. Chris­tiane North­rup made the com­ment that our thy­roid pro­blems were due to an “energy bloc­kage in the throat region, the result of a life­time of ’swa­llo­wing’ words one is aching to say.” Dou­ble yikes.

And since then, we have watched nothing, zilch, zero from Oprah and The Opray Win­frey Show about a horren­dous 55-year medi­cal scan­dal of thy­roid treat­ment that has nega­ti­vely affec­ted the lives of hun­dreds of millions of thy­roid patients world­wide. T4-only meds like Synth­roid, the dar­ling medi­ca­tion of the medi­cal com­mu­nity for hypothy­roi­dism treat­ment, has left hun­dreds of millions sick.  The TSH lab test has equally sent us to hell.  Because we have been for­ced to live with con­ti­nuing symp­toms of hypothy­roi­dism, we’ve endu­red much more tes­ting and have been put on many other medi­ca­tions to ban­daid our con­ti­nuing symp­toms. And a majo­rity of us have had to deal with the addi­tio­nal bur­den of adre­nal fati­gue thanks to all the above.

It’s been hell, Oprah. But you never lis­te­ned.  So for me per­so­nally, I could care less what you do now. You’ve let millions of us down.

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

On a far bet­ter note:  Last night’s Thy­roid Patient Com­mu­nity Call on Talkshoe was exce­llent. From thyroid/adrenal patient Vale­rie Tay­lor, who is abso­lu­tely one of the most know­led­gea­ble patients in the world about adre­nals and RT3, we gai­ned good infor­ma­tion how it rai­ses its ugly head when you have high or low cor­ti­sol, low B12, low ferri­tin and other untrea­ted issues, and how to treat it. You can go back to Talkshoe and lis­ten to the broad­cast, which was Epi­sode 7.  See my blog post right below this. As far as future Talkshoe Com­mu­nity Calls: they will always be announ­ced here first.

Below that, you’ll read how cellu­lose as a filler just may be a huge pro­blem in natu­ral desic­ca­ted thy­roid meds. But we are also dis­co­ve­ring that a good desic­ca­ted thy­roid like Natu­reth­roid, even with its cellu­lose, can seem even worse if we have undis­co­ve­red and untrea­ted issues like low B12, low Vit. A, low ferri­tin, low Vit. D and other con­di­tions com­mon with hypothy­roi­dism.  Make sure you have tes­ted for these.

*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!

I con­fess that I hated my Che­mistry class in high school, even if Mr. Bowen tried to make it inte­res­ting and favo­red the girls over the boys in class.  But lo and behold, one of those ele­ments on the Perio­dic Table ended up having a sig­ni­fi­cant role in all or our lives as thy­roid patients: iodine.

Iodine can be found in every inch your body, but is espe­cially pre­va­lent in your thy­roid, which makes it an inte­res­ting ele­ment for those of us with thy­roid disease.  The active thy­roid hor­mone T3 (triio­dothy­ro­nine) is made up of three iodine mole­cu­les, and the sto­rage hor­mone T4 (thy­ro­xine) has four iodine mole­cu­les. In fact, without pro­per amounts of iodine, your thy­roid wouldn’t even func­tion well.

An opti­mal amount of iodine has also been shown to improve breast health, pro­vide can­cer pro­tec­tion, remove toxins like Bro­mide, fluo­ride, mer­cury etc…and in some cases, has hel­ped thy­roid patients either lower their dose, or even get off thy­roid treat­ment. Thy­roid patient Diana tells of get­ting off thy­roid treat­ment due to iodine on the Sto­ries of Others page.

***This Thurs­day eve­ning on the Thy­roid Patient Com­mu­nity Call on TalkShoe, we’ll have guest Stepha­nie Buist, owner of the Yahoo group Iodine and a 9-year thy­roid can­cer sur­vi­vor who strongly feels iodine has been a huge fac­tor.   We’ll explore how much iodine a per­son needs, the loa­ding loa­ding test, the best sour­ces of iodine sup­ple­men­ta­tion, whether you need iodine, as well as con­tro­ver­sies with iodine use, inc­lu­ding Hashi­mo­tos disease or bad reac­tions.  Times for the call are 6 pm Paci­fic, 7 pm Moun­tain, 8 pm Cen­tral and 9 pm Eas­tern. You can lis­ten right on your com­pu­ter, or call to talk directly to Stepha­nie and Janie. Join us!

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

Sheila Tur­ner of TPA-UK  (Thy­roid Patient Advocacy-UK www.tpa-uk.org.uk) is star­ting the ball rolling on something very inte­res­ting:  they have con­tac­ted a lab in the UK who will do a qua­li­ta­tive analy­sis of the old Armour vs. the new refor­mu­la­ted Armour to get a break­down of the ingre­dients, and poten­tially give us an idea WHAT is cau­sing thy­roid patients to have a return of their hypothy­roid symp­toms since Forest refor­mu­la­ted Armour in 2009.

Howe­ver, says Sheila, this will cost in the region of £600 to £700 (appro­xi­ma­tely $1100).  Says Sheila, “If there are enough patients who are willing and able to help raise the fun­ding requi­red by giving wha­te­ver we can afford, we could finally get the ans­wer as to which chan­ges have been made in the new for­mula and whether this inc­lu­des chan­ges in the active (as some have sug­ges­ted) and the inac­tive ingre­dients and put this baby to rest once and for all.”

You can con­tact Sheila at the above web­site and make a pledge.  As I write this, they have already have £100 pledged.

UPDATE: Stepha­nie above has agree to be the ‘Pledge and Money Collec­tor’ for the lab work nee­ded to analyze the old vs new Armour . She can be con­tac­ted at ladybugsandbees@sbcglobal.net

Before my thy­roid disease of hypothy­roi­dism was dis­co­ve­red, I had horri­fic and debi­li­ta­ting con­se­quen­ces from exer­cise or any acti­vity.  You can read about it all here or even more detail in the Intro­duc­tion of the patients-to-patients Stop the Thy­roid Mad­ness book.

When my so-called “bor­der­line hypothy­roid” was dis­co­ve­red by age 30, I thought whoo-hooo, I’ll finally get rid of this strange night­mare whe­ne­ver I tried to do ANYTHING.  I was put on Synth­roid and my anti­ci­pa­tion for a bet­ter life was profound.

But my hope was dashed. Not only did my body con­ti­nue to ove­rreact to acti­vity, it got worse over time.  Horribly worse.  Nearly twenty years after I had star­ted on a T4-only medi­ca­tion, and was told by one doc­tor after another that my pro­blem was not my thy­roid, I was going to apply for social secu­rity disability.

But they were all dead wrong. Sure, turns out I have a form of Dysau­to­no­mia, a mal­func­tion and ove­rreac­tion of my auto­no­mic ner­vous sys­tem, cau­sing my body to far ove­rreact to stress. But remai­ning hypothy­roid, as we all do on the sucky t4-only medi­ca­tions, had made it far worse. And I pro­ved it. When I switched to Armour desic­ca­ted thy­roid in 2002 and rai­sed it accor­ding to what patients have lear­ned, a miracle occu­rred.  My severe auto­no­mic reac­tions made an almost com­plete tur­na­round.

And my expe­rience of change or impro­ve­ment when it comes to other disea­ses or con­di­tions has been sha­red by others.

Last week, I recei­ved an email from a man whose brother has MS – Mul­ti­ple Scle­ro­sis.  And though Armour has not taken his MS away, it allo­wed him to move from this wheelchair to a wal­ker! That is impressive.

So I am left won­de­ring:  what other con­di­tions or disea­ses, which are uni­que in them­sel­ves, are wor­se­ned being undiag­no­sed thanks to the lousy TSH lab test or the ina­de­quate treat­ment of Synth­roid, Levoxyl, levothy­ro­xine, Eltro­xin and all other T4-only medi­ca­tions? It’s awful to think about it.

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

Miche­lle, 40-or-50-something, came over to my house today to go over some paper­work. I hadn’t taken my Armour yet, and I said “Excuse me, I need to pop my thy­roid meds under my tongue.”

“Oh, I take thy­roid meds, too.  Synth­roid” she explai­ned as she was wri­ting on the papers with her pencil.

Now when I hear something like that, being who I am, I’m like a bear in a china cabi­net who sud­denly smells honey.  So as not to overwhelm,  I casually say “Oh, I used be on Synth­roid.” And after a long pause while we are going over the paper­work, I say “Did you know there’s a world­wide patient revo­lu­tion going on against medi­ca­tions like Synthroid?”

At the point, she rai­ses her head in curiosity.

I then stick my paw in the honey: “You and I and millions have been put on meds like Synth­roid and then told we are “nor­mal” because the TSH says so. But all of us have con­ti­nuing symp­toms of hypothy­roi­dism.  It’s a lousy medication. ”

And when I laid out what those con­ti­nuing symp­toms were, her eyes got as big as sau­cers and she was sha­king her head up and down in recog­ni­tion. “Depres­sion, rising cho­les­te­rol and blood pres­sure, easy weight gain, fati­gue, less sta­mina than others, dry hair and skin, fee­ling cold, etc”, I told her.

And the most pro­found aspect of Miche­lle? She lives her life like the Ener­gi­zer Bunny, going and going and going. She told me she often doesn’t get home until 6 pm doing her job, and she clearly has a lot of pro­fes­sio­nal responsibilities.

But does an active Miche­lle mean that Synth­roid works and is just as good a thy­roid treat­ment as desic­ca­ted thy­roid? You know the ans­wer. She revea­led that she’s quite tired when she comes home, wishes she had more energy, and still has issues with her weight, even though she lost some when she got on Synthroid.

And rea­ding bet­ween the lines, it was clear that Miche­lle is pro­bably on an anti-depressant, a sta­tin, and a blood pres­sure medi­ca­tion.  And…she clearly has an adre­nal pro­blem that’s only going to get worse. She has a terri­ble time falling asleep at night (high cor­ti­sol), and is very sen­si­tive to light and noise (high or low cortisol).

Sud­denly it daw­ned on me. I am sit­ting across hun­dreds of millions of women, and some men. I am lis­te­ning to how millions live their lives – making a living, main­tai­ning a home, loving their spou­ses and chil­dren, inte­rac­ting with peo­ple.  But under­neath it all, it’s not a pretty pic­ture. They cope, and they cope again.  And they dish out their money for more medi­ca­tions to treat the very symp­toms cau­sed by an infe­rior medi­ca­tion. And as they age, they’ll pay each of their millions of pri­ces, just as my mother did, and as I was hea­ded.  Ener­gi­zer bun­nies with faulty batteries.

P.S. Barack Obama has a health care reform plan. Will it change the lives of those 50 million with thy­roid disease in the US, or will it only con­ti­nue this T4-only tra­vesty and health care scan­dal?  Are we hea­ded in the same insane direc­tion as the UK when it comes to T4-only?  Express your opinion.