stop the thyroid madness tags

You might have already known about her, but it was only a few days ago when I found out that the effer­ves­cent Jane Pau­ley, for­mer host of the The Today Show and Date­line NBC, has had cer­tain medi­cal strug­gles in her life­time. They have inc­lu­ded hives (trea­ted with ste­roids), depres­sion (trea­ted with an anti-depressant), a bip0lar disor­der (trea­ted with lithium), and the autoim­mune thy­roid disease called Hashi­mo­tos (trea­ted with Levoxyl).

Hives are sud­den small rai­sed bumps which can mass into patches, and are often itchy and mise­ra­ble.  Bipo­lar, also called Manic Depres­sive Disor­der, invol­ves swings bet­ween extreme mania (exci­ted, ener­ge­tic) follo­wed by depres­sion (extreme sad­ness or lowe­red res­ponse to life).

And all the above four issues made me pause.  Con­si­der the following:

1. Hives have not only been lin­ked to hashi­mo­tos disease, they have both been suc­cess­fully trea­ted with the most bri­lliant medi­ca­tion for hypothy­roi­dism ever crea­ted: natu­ral desic­ca­ted thy­roid. That hea­ling con­nec­tion was revea­led by the belo­ved Dr. David Derry of Canada here.  Hives is also men­tio­ned as a lin­ge­ring hypothy­roid symp­tom while on T4 meds which went away with desic­ca­ted thyroid.

2) Depres­sion is all too com­mon for those with undiag­no­sed hypothy­roi­dism (thanks to the lousy TSH lab test) or under­trea­ted thy­roid disease (thanks to the lousy T4-only meds like Levoxyl which pro­mo­tes depres­sion and other lin­ge­ring symp­toms). Many patients report a reso­lu­tion of their depres­sion with desic­ca­ted thyroid.

3) Bi-polar can often be a mis­diag­no­sis for Hashi­mo­tos disease, since the lat­ter can cause the same swings. Even without Hashi’s, bipo­lar and other men­tal health issues can be a com­mon mani­fes­ta­tion of low cor­ti­sol aka adre­nal fati­gue, also cau­sed by undiag­no­sed hypo because of the TSH, or under­trea­ted hypothy­roi­dism with T4.  At the very least, bipo­lar can be a com­mon mani­fes­ta­tion of a hypothalamus-pituitary – adre­nals (HPA) axis dys­re­gu­la­tion, again com­mon with those undiag­no­sed or under­trea­ted hypothyroidism.

4) Lithium, iro­ni­cally, is a known cause of hypothy­roi­dism, only making one’s thy­roid situa­tion worse, as well as pro­mo­ting poten­tial adre­nal fati­gue and low cortisol.

Now gran­ted, Jane’s big four of hives, depres­sion, bipo­lar, and thy­roid disease could be coin­ci­den­tal.  But there’s so much con­nec­tion in one way or another bet­ween them that you are left won­de­ring if she’s been a vic­tim of mis­diag­no­sis and under­treat­ment just like hun­dreds of millions of us thanks to labs and medi­ca­tions which do not work. And she may need a good doc­tor to be ree­va­lua­ted, besi­des put on desic­ca­ted thy­roid and dis­co­ver what patients have lear­ned about bet­ter treatment.

And on another note: I fear it’s going to take someone just as power­ful, and as stric­ken with health issues which could be rela­ted,  as Jane Pau­ley is, to FINALLY break open the pro­found and des­truc­tive media silence about this scan­dal of thy­roid treat­ment diag­no­sis and treat­ment which has left hun­dreds of millions SICK with pro­found sto­ries,  and is the very rea­son Stop the Thy­roid Mad­ness exists. Do we dare hope? We’ll see.

Do you have a simi­lar story of men­tal health issues that ended up being con­nec­ted to your thy­roid and/or adre­nal state? Use the Com­ment form and let’s talk. Who knows – maybe Jane will see this, pon­der, and become far bet­ter edu­ca­ted like we’ve had to become!

*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!

When Forest Labs refor­mu­la­ted Armour ear­lier this year, they sta­ted they inc­rea­sed the filler Mic­rocrys­ta­lline Cellu­lose, and dec­rea­sed the Suc­rose (sugar). The tablets became impos­si­ble to do sublin­gually, and you have to won­der why they would change a qua­lity that patients prai­sed so hea­vily.  Posi­tive opi­nion among patients for Forest Labs slip­ped seve­ral notches.

But the real cuckoo’s nest for many thy­roid patients, who knew firsthand the life-changing bene­fits of natu­ral desic­ca­ted thy­roid, was a mad­de­ning return of serious hypo symp­toms on the new Armour and sub­se­quent new stress on their adre­nals, sooner…or later! You can read seve­ral horror sto­ries in the com­ments of the post below, or go here.

So patients tur­ned to other alter­na­ti­ves: Natu­reth­roid and Westh­roid by RLC Labs…then when the desic­ca­ted thy­roid shor­ta­ges hit in the Fall of 2009, Erfa’s Thy­roid, Com­poun­ded desic­ca­ted thy­roid, and others. And there have been pro­blems for some patients on most everything they switched to.  The LEAST pro­ble­ma­tic has been Erfa’s Thy­roid, and the most pro­ble­ma­tic was Compounded.

So what has been the com­mon thread in the most pro­ble­ma­tic desic­ca­ted thy­roid pro­ducts? CELLULOSE, a plant fiber, and more com­monly known by the trade name Avi­cel. And what does fiber do in your sto­mach? Inhi­bits absorp­tion. Armour’s cellu­lose was rai­sed, and bamm…problems.  Com­poun­ded desic­ca­ted thy­roid, with cellu­lose as a filler, has been pro­ble­ma­tic for many patients with a return of hypo symp­toms,  espe­cially if  it was Methyl Cellu­lose, a lar­ger par­ticle size pro­duct. But some have even had pro­blems with com­poun­ded con­tai­ning Mic­rocrys­ta­lline Cellu­lose, the sma­ller cellu­lar pro­duct. And a cer­tain body of patients even had pro­blems with Natu­reth­roid before it became scarce. And Natu­reth­roid uses cellu­lose as a filler.

Is this pro­blem true with T3-only pro­ducts? Yup. Patients have noted that gene­ric T3 is far less effec­tive than the brand name Cyto­mel (both Liothy­ro­nine Sodium)  And what filler it up to 70% in the gene­ric T3?  CELLULOSE.  See the per­cen­ta­ges here for Paddock’s gene­ric T3.

Why have less pro­blems been repor­ted with Erfa’s Thy­roid? Perhaps because it has no cellu­lose as a filler! See this list of ingre­dients, which STTM has been wor­king on lovingly for a few years.

What does lite­ra­ture say about the use of Cellu­lose as a filler in medi­ca­tions? Plenty. Cellu­lose is from wood. Wood is fiber. And fiber in your gut affects absorp­tion. From http://www.umm.edu/altmed/articles/fiber-000303.htm we get this:

* Die­tary fiber has been repor­ted to lower the blood levels and effec­ti­ve­ness of tricyc­lic anti­de­pres­sant medications…Reduced die­tary fiber intake inc­rea­sed the blood levels and impro­ved symp­toms in these patients.

* While fiber sup­ple­ments may help to regu­late blood sugar levels, they may also inter­fere with the absorp­tion of anti-diabetic medications.…Therefore, fiber sup­ple­ments should not be taken at the same time as these medications.

* Taking solu­ble fiber such as psy­llium with car­ba­ma­ze­pine (Tegre­tol), a medi­ca­tion used to treat sei­zure disor­ders, may dec­rease the absorp­tion and effec­ti­ve­ness of carbamazepine.

* Fiber in the form of pec­tin (from fruit) and oat bran repor­tedly redu­ces the body’s abi­lity to absorb cholesterol-lowering medi­ca­tions known as “sta­tins,”… and could lead to dec­rea­sed effec­ti­ve­ness of these medications.

* Fiber sup­ple­ments may reduce the body’s abi­lity to absorb digo­xin (Lano­xin), a medi­ca­tion used to regu­late heart function.

* Cli­ni­cal reports sug­gest that psy­llium or other solu­ble fibers may lower lithium levels in the blood, redu­cing the effec­ti­ve­ness of this medication.

* In one cli­ni­cal study, the fiber sup­ple­ment guar gum redu­ced blood levels of penicillin.

Cellu­lose can clearly be a pro­blem, espe­cially when it’s ratio is too high as com­pa­red to the desic­ca­ted thy­roid. So what can you do?

If you are using a com­poun­ded medi­ca­tion, strongly request pow­de­red aci­dophi­les, also spe­lled aci­dophi­lus, as your filler.  One gal sta­tes her com­poun­ding phar­macy uses pow­de­red Gin­ger (but beware of too much Gin­ger if you have Mitral Valve Pro­lapse. It can cause palps if you take too much – my expe­rience).  See what other fillers your com­poun­der can offer.

Another pos­si­bi­lity is Cellu­lase, an enzyme which helps the split­ting and break­down of cellu­lose, and which was pro­po­sed to me by Natu­ro­pathic stu­dent Stepha­nie Buist. Goo­gle “cellu­lase” and find sup­ple­ments that con­tain it.  If it looks pro­mi­sing to you, I’ll be curious to read your expe­rience with swa­llo­wing a cellu­lase sup­ple­ment, then swa­llo­wing your pro­ble­ma­tic desic­ca­ted thyroid.

And lea­ning towards Erfa’s Thy­roid can be a plus.

Have other ideas or com­ments about Cellu­lose in our desic­ca­ted thy­roid? Use the COMMENT func­tion below and let’s talk!

(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?

Last 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!