T4-only tags

Tonight was a beau­ti­ful night to do my aero­bic wal­king. It had pou­red this after­noon for 30 minu­tes, so the early eve­ning air was slightly cool and very clean.

And on the last leg of my jour­ney, I stop­ped and said to Car­lin as she was wal­king out of her front door “Where you have been lately? I haven’t seen you out wal­king with your husband.”

Car­lin and her hus­band Clint are pro­bably in their late 70’s – both vibrant indi­vi­duals and fre­quent wal­kers in the same area.

“Well”, she said wist­fully as she glan­ced down the street I had just wal­ked, “I have to go in Mon­day for a Pacemaker.”

Turns out she has fibri­lla­tions and other heart issues, and even wal­king from her bedroom to her living room can exhaust her.  I told her how well my mother-in-law has done with her pace­ma­ker. She told me she’d be in the hos­pi­tal for at least 3 – 4 days for the sur­gery and observation.

And as we were chat­ting over the low white fence, I couldn’t help but notice the scar on her neck – the same scar my own mother had from the remo­val of her thy­roid years ago.  And the rest of Carlin’s story, and the rea­lity of her story, made me want to punch the nea­rest elec­tri­cal pole in disgust.

Carlin’s thy­roid was remo­ved over 40 years ago.  She remem­bers being on “2 grains of something” – clearly it was desic­ca­ted thy­roid. And she says she felt really good. But she wasn’t on it long, as her doc­tor remo­ved it and put her levothy­ro­xine over 30 years ago. You know, that “new and modern” T4-only CRAP which doc­tors fell for like the blind follo­wing the blind begin­ning in the 1960’s until today. (The story behind the intro­duc­tion of T4 onto patients in the early 1960’s is in Chap­ter One of the STTM book)

So I knew. Her heart trou­bles could be one of the many side effects of the infe­rior treat­ment of T4-only medi­ca­tions (which also inc­lude Synth­roid, Levoxyl, Eltro­xin, Oroxine…all of them). My own mother suf­fe­red the same fate while on Synth­roid her entire life. And patients chat about this all the time on thy­roid groups – heart issues while on T4.

I star­ted pro­bing. She has had issues with high blood pres­sure. Another typi­cal side effect of the crap T4-only medi­ca­tion, and which is remo­ved with desic­ca­ted thy­roid. She has had issues with depres­sion – another typi­cal side effect of the crap T4-only medi­ca­tion, and which is remo­ved with desic­ca­ted thy­roid. She tal­ked bit­terly about the slew of medi­ca­tions she’s had to be on for years to coun­ter all her pro­blems, and which had given her bad side effects.

And the next worse thing she told me? She had acid reflux so bad a few years ago that they did sur­gery on her sto­mach. She had sur­gery for a con­di­tion which is VERY com­mon with thy­roid patients who are on T4 meds – low sto­mach acid from a lower meta­bo­lism, which cau­ses acid reflux. i.e. a symp­tom of con­ti­nued hypothy­roi­dism which is CORRECTED when on desic­ca­ted thyroid.

It was hard to con­tain myself. Here was this vibrant, life-loving, inte­lli­gent woman who has been on T4-only for over 30 years and has endu­red health pro­blems, sur­ge­ries, side effects from all sorts of money-grubbing phar­ma­ceu­ti­cal pills, and now, has to go in Mon­day for a pace­ma­ker. And in all pro­ba­bi­lity, most of what she has gone though could have been pre­ven­ted if some doc­tor had been WISE enough to keep this woman on desic­ca­ted thyroid.

I am livid and sick to my stomach.

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• Are you che­wing up your Armour or Natu­reth­roid? It will make the treat­ment far bet­ter, as it will release the desic­ca­ted thy­roid from the excess cellu­lose.  If you are on com­poun­ded, you need to tell the phar­ma­cist to stop using cellu­lose as a filler. On Erfa? You can do it sublingually.
• If you are rea­ding this right on STTM’s blog, and would like to be noti­fied of each blog post, just sign up to the left and under the links.
• Have you done labs and found your­self with high RT3? Get off Sele­nium for the time being, as it can help con­vert T4 to the RT3 along with the other rea­sons you make too much.
• Want to spread the word about far bet­ter treat­ment? T-shirts and bum­per stic­kers are here.

This past Satur­day, while brow­sing at the next-to-last garage sale (one of my favo­rite Satur­day mor­ning events), my ears per­ked up like a bunny when I heard a gal chat­ting with the owner of the house.  I heard things like “sick for 5 years…fibromyalgia…a lot of pain all over my body…had to quit my job and live with my parents…in bed for two years…they had to bath me...” and more mise­ra­ble ima­ges of something she was clearly glad to be over.

So, while my hus­band sat in the car with the patience of a saint, I lin­ge­red. When she finished chat­ting and was hea­ding to her car, I wal­ked towards her and said gin­gerly “I overheard your con­ver­sa­tion. Can I ask you about the fibrom­yal­gia and your expe­rience??” I couldn’t help myself.

As a Thy­roid Patient Acti­vist who has stood up to the inane allo­pathic fai­lure in the diag­no­sis and treat­ment of hypothy­roi­dism, I knew that the majo­rity of cases of “fibrom­yal­gia” were due to undiag­no­sed or poorly treat­ment hypothy­roi­dism, as well as the accom­pan­ying hell of adre­nal fati­gue,  thanks to the gar­bage can TSH lab test or the stu­pi­dity of T4-only treat­ment like Synth­roid.  Yet, here was a young woman, Mel, who was now the pic­ture of health. What was her story??

Mel’s story was a tale of sud­den onset follo­wed by five years of misery, all over body pain,  immense fati­gue, utter hel­pless­ness, debi­li­ta­tion, and neck lymph nodes SO swo­llen that they loo­ked like two huge goi­ters – right and left. It was also a sce­na­rio of no firm diag­no­ses, yet no hesi­ta­tion by doc­tors to make stabs– from fibrom­yal­gia to an unk­nown chro­nic fati­gue disorder.

But I knew right away what she pro­bably had: acute Eps­tein Barr Virus (EBV) reactivation.

I knew because I had the exact same malady which once took away more than a year of my life (as com­pa­red to Mel’s horri­fic five years).  And like her, with the use of medi­ta­tion (and in my case, intense ima­gery and homeo­pathics), I got well as if it never happened.

And we also sha­red a rea­son why the EBV virus became acti­va­ted in our bodies in the first place: STRESS.  For Mel, it appea­red to have nothing to do with anything thyroid-related, but an extre­mely stress­ful helping-vocation that was eating her alive. For me, it was the stress of having to be where I didn’t want to be, fee­ling overtly powerless…and on top of being on the lousy Synthroid.

And for thy­roid patients all over the world, inc­lu­ding you, the risk of reac­ti­va­tion of the Eps­tein Barr Virus is a cons­tant threat. It can result from one or more of the follo­wing bio­lo­gi­cal stresses:

• being undiag­no­sed thanks to the ina­de­quate TSH lab test
• being on a T4 medi­ca­tion like Synth­roid, Levoxyl, Levothy­ro­xine, Eltro­xin, Oro­xine, etc
• falling into low cor­ti­sol from adre­nal fatigue
• having chro­nic side issues pulling your body down such as glu­ten into­le­rance or celiac, low ferri­tin, poor diges­tion, or making mis­ta­kes in your treatment

Even worse, add life’s stres­ses as icing on the cake, and you’re a sit­ting duck for the risk of reac­ti­va­ted EBV.

What is EBV? Eps­tein Barr Virus,  also called human her­pes­vi­rus 4 ( HHV-4) is an oppor­tu­nis­tic virus that actually lies dor­mant in at least 95% of all adults over their 30’s. It’s what cau­ses mono­nuc­leo­sis, aka “mono”, as a tee­na­ger,  but you don’t have to have had mono to carry the dor­mant virus. Wiki­pe­dia sta­tes that it also pro­bably has a pri­mary role in many autoim­mune disea­ses, inc­lu­ding ” der­ma­tom­yo­si­tis, sys­te­mic lupus erythe­ma­to­sus, rheu­ma­toid arth­ri­tis, Sjogren’s syn­drome, and mul­ti­ple scle­ro­sis.” i.e. this is one nasty virus!

Why do so many thy­roid patients find them­sel­ves with it? Millions of thy­roid patients live their lives com­pro­mi­sed due to being on T4-only meds like Synth­roid, Levoxyl, levothy­ro­xine, Eltro­xin, Oro­xine, and other T4 med brands.  Addi­tio­nally, patients find them­sel­ves with poorly func­tio­ning adre­nals, poor diges­tion and other con­di­tions rela­ted to a poor treat­ment – all adding to a lowe­red immune sys­tem, which allows the oppor­tu­nis­tic EBV virus to take ahold, espe­cially in the face of extreme or chro­nic life stress.

What are symp­toms of a reac­ti­va­ted EBV? It can vary from patient-to-patient, but can inc­lude easy and excess fati­gue, achi­ness, joint pain, all over body pain, swo­llen lymph nodes, slight fever, rin­ging in the ears, and a gene­ral I-don’t-feel-well. When my EBV anti­bo­dies were acute, I would be in bed for 2 – 3 days after pulling weeds for just twenty minu­tes while sea­ted.  I couldn’t gro­cery shop; I couldn’t do hou­se­work. Nothing. Nada. I also had cons­tant rin­ging in the ears and achiness.

How do I find out if I have it?? Ask your doc­tor to send you to a lab to be tes­ted for it.   Or you can use Healthcheck USA–scroll down on the lat­ter link to find the test. Put STTM10 in the form to get a discount.

How do I treat it?? It’s not easy. I per­so­nally bene­fit­ted from taking a presc­ri­bed anti-virus medi­ca­tion. Though that les­se­ned my symp­toms by 50%, it wasn’t enough. I then moved to homeo­pathic medi­ca­tions and some dedi­ca­ted men­tal ima­gery to finally get rid of it, as well as lots of rest and the immune enhan­cing sup­port of vita­mins, mine­rals, sup­ple­ments plus healthy stra­te­gies i.e. wha­te­ver it takes to nou­rish your immune sys­tem. Nou­rishing sup­ple­ments inc­lude high dose Vit. C (2000 mg mini­mum),  Vit E as mixed tocophe­rals,  sele­nium (200 — 400 mcg), mush­room extracts, CoQ10, high dose B-vitamins, mine­rals plus plenty of healthy and raw foods.  And ulti­ma­tely as a thy­roid patient, being on a MUCH bet­ter hypothy­roid treat­ment with natu­ral desic­ca­ted thy­roid is the key, besi­des trea­ting one’s adre­nal fati­gue, glu­ten or diges­tive issues, low ferri­tin, and all other rela­ted conditions.

Bot­tom line, once you are ade­qua­tely trea­ting your thy­roid pro­blem (see the current Options for Thy­roid Treat­ment), addres­sing poten­tial adre­nal fati­gue, low ferri­tin, glu­ten issues, low B12, for exam­ple, and using good stress mana­ge­ment in the face of pres­su­res within your life, your risk of having a reac­ti­va­tion of the dor­mant EBV virus is very low.

(Mon­day April 5^th Postsc­ript to my blog post below: One of the patients inter­vie­wed by this repor­ter sta­tes the follo­wing: The report left the impres­sion that we (desic­ca­ted thy­roid users) are a teeny little group on the frin­ges of medi­cine, rather than a ground swell of well researched patients trying to improve our health (and every aspect of our lives) with ratio­nal, com­mon sense alter­na­ti­ves. We are still voi­ces crying in the wil­der­ness, and igno­red by the mains­tream medi­cal pro­fes­sio­nals. C’est la vie.)

Finally.

After years of near-complete silence by the mass media about the pro­found 60-year medi­cal scan­dal of T4-only treat­ment like Synth­roid, as well as lives chan­ged due to natu­ral desic­ca­ted thy­roid, we have some pro­gress.

A few weeks ago, I was con­tac­ted by health repor­ter Pau­line Dakin of CBC (Cana­dian Broad­cas­ting Cor­po­ra­tion) Radio. She was pre­pa­ring a report on thy­roid treat­ment and desic­ca­ted thy­roid, asking for names of Cana­dian patients and doc­tors who might speak of their own expe­rien­ces. Among others, I got her in touch with Cana­dian thy­roid patient The­resa Roberts, who has remin­ded me of this report.

And, Pau­line Dakin’s report on desic­ca­ted thy­roid will be pre­sen­ted TODAY, Eas­ter Sun­day, on CBC Radio One on “The World This Wee­kend” at 6:00 pm Eas­tern Time (5 pm Cen­tral, 4 pm Moun­tain and 3 pm Paci­fic). It’s a com­prehen­sive 1/2 hour news pro­gram that airs natio­nally on wee­kend eve­nings and takes an in-depth look at current issues.

And even if you aren’t in Canada, you can lis­ten to this pro­gram on CBC Radio One live at http://www.cbc.ca/worldthisweekend/ , or you can down­load the pod­cast (which may require free subscription).

HIGH FIVE to Pau­line Dakin and the Cana­dian Broad­cas­ting Corporation.

The 60-year use of T4-only medi­ca­tions like Synth­roid, Levoxyl, Eltro­xin and other brands has NOT wor­ked for hun­dreds of millions world­wide, resul­ting in each patient’s amount and degree of lin­ge­ring symp­toms of hypothy­roi­dism as well as the added misery of adre­nal fatigue.

We have also been ban­dai­ded with anti-depressants, sta­tins, pain meds, high blood pres­sure meds and more, all the while being told by our clue­less doc­tors that we are schi­zoph­re­ni­cally ’”nor­mal” because the also-lousy TSH test says so.

Or, like my own mother, we have been sub­jec­ted to Elec­tric Shock The­rapy because of depres­sion cau­sed by T4 meds and their ina­de­quate treat­ment.  You can read about my mother here.

Stop the Thy­roid Madness™!

P.S. Sign up for the “news­let­ter noti­fi­ca­tion” of this blog – see right below the links to the left. Or you can use your RSS feed page.

(Side note: I feel so stu­pid. If you have sig­ned up to receive noti­fi­ca­tion of STTM’s blog posts (see sig­nup on left below links), I have inad­ver­tently fai­led to check a par­ti­cu­lar box for the emails to go out. I won’t make that mis­take again. See the two posts below, which you weren’t noti­fied about when they came out. )

I recently chat­ted with Sheila Tur­ner, a thy­roid patient advo­cate in the UK who runs the web­site Thy­roid Patient Advo­cacy – Uni­ted Kingdom.

And she has become abso­lu­tely dis­gus­ted at what is hap­pe­ning in the UK – dis­gus­ted enough to stop being polite and to ask direct and poin­ted ques­tions on the home page of her TPA-UK website.

What spu­rred her tough new stand?  Says Sheila, “The RCP (Royal College of Phy­si­cians), BTA (Bri­tish Thy­roid Asso­cia­tion) et al are doing everything they can to boy­cott all T3 con­tai­ning pro­ducts and their latest ‘Sta­te­ment’ on the diag­no­sis and mana­ge­ment of pri­mary hypothy­roi­dism is ban­ning gene­ral prac­ti­tio­ners from presc­ri­bing T3 at all.”.

And, explains Sheila, it’s got­ten to the point where most any Gene­ral Prac­ti­tio­ner is com­ple­tely afraid to presc­ribe T3 or any T3-containing pro­duct like natu­ral desic­ca­ted thy­roid for fear of being repor­ted. “The ONLY peo­ple allo­wed to recom­mend that T3 be presc­ri­bed are “acc­re­di­ted endoc­ri­no­lo­gists”, says Sheila. (And how many patients have expe­rien­ced how close min­ded Endo’s can be towards desic­ca­ted thyroid.)

And here are her bri­lliant, in-your-face ques­tions with links, which are per­ti­nent for ALL of us, whether in the UK or not:

1. WHY do the GMC, the RCP, the BTA et al. deli­be­ra­tely choose to ignore the scien­ti­fic evi­dence that has been avai­la­ble for over 40 years ?
2. WHY are medi­cal asso­cia­tions igno­ring the 13% fai­lure rate of T4-only the­rapy for the past 50 years? Why are patient’s com­plaints dis­mis­sed?
3. WHY has there been no correc­tion to the RCP sta­te­ment when there are patients who are coun­te­re­xam­ples to the vali­dity of T4-only therapy?
4. WHY is the con­fu­sion of two defi­ni­tions for ‘hypothy­roi­dism allo­wed to continue?
5. WHY are gui­de­line authorship and con­cise gui­dance to good prac­tice pro­to­cols ignored?
6. WHY are indi­vi­dual symp­toms of hypothy­roi­dism sta­ted to be “non-specific” when Bai­sier found groups of these symp­toms may be quite spe­ci­fic?
7. WHAT further inves­ti­ga­tions for non-thyroidal cau­ses are recom­men­ded as rele­vant to the symp­toms of hypothy­roi­dism when pitui­tary and thy­roid GLAND func­tion tests are bioche­mi­cally nor­mal –  Levels of fT3, rT3 and adre­nal levels?
8. WHY are the stu­dies by Das (2007) and Lewis (2008), which found that patients could be suc­cess­fully trea­ted with thy­roid extract being ignored?
9. WHY is medi­cine igno­ring false nega­tive test results?
10. WHY do doc­tors refuse to explain and/or jus­tify their deci­sions, the­reby withhol­ding infor­ma­tion neces­sary for valid con­sent to treatment?
11. WHY does the NHS refuse to take steps to pro­tect human rights when suf­fe­rers are put at risk through a dis­re­gard of the demand that patients should be trea­ted with fair­ness, res­pect, equa­lity, dig­nity and autonomy?
12. WHY are labo­ra­tory disc­re­pan­cies in serum tes­ting being ignored?

I appre­ciate the tough stand Sheila is taking. We HAVE to take a strong stand in light of the world­wide igno­rance about 60 years of patient suf­fe­ring on T4 meds like Synth­roid, Eltro­xin et al, about bet­ter treat­ment with natu­ral desic­ca­ted thy­roid and T3 pro­ducts, and about the lousy TSH lab test!

In fact, in light of prac­ti­cally NO mass media atten­tion to this huge world­wide thy­roid treat­ment scan­dal, we have to shout it whe­re­ver we can and hope that some WISE repor­ter or media per­so­na­lity gets this and will shine a media light at the idiocy going on out there towards thy­roid patients. Stop the Thy­roid Mad­ness!™

Well, I just can’t let this go by the way­side, says I with a cheesy grin.

When I did the lighthear­ted post, two posts below his one, about a woman who got filthy rich thanks to her old stock with Abbott Labs (the makers of Synth­roid),  it got a humo­rous and crea­tive com­ment from “Elizabeth”:

I have found a cou­ple of uses for a bottle of Synthroid:

A. Doors­top
B. Prop for DSL modem (so it won’t overheat)

Howe­ver, I do not recom­mend it to be taken inter­nally. Ever.

hahahaha.  You get a blue rib­bon for that gem, Mz. Eli­za­beth.  And I think Elizabeth’s creatively-funny reply deser­ves expan­sion and a party of fun-lovin’ con­tri­bu­tors. So now it’s your turn, fine rea­der of the STTM blog,  to list your own inno­va­tive and hila­rious ideas for that bottle of a T4-only medi­ca­tion.  Just use the Com­ment below this post and let ‘er rip.

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Below this post you’ll see infor­ma­tion on the current fai­lure of McCain’s coc­ke­yed anti-supplement bill, which if it had pas­sed, would have nega­ti­vely affec­ted every sin­gle thy­roid patient out there who is trying to undo the damage done by T4 meds and/or the inane TSH lab test.  So though we all won right now with this fai­lure, you betcha we’re going to have to keep our eyes and ears open for the money-grubbing Big Pharma to influence someone else about supplements.