eltroxin 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.

(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!™

When the shor­ta­ges hit the Uni­ted Sta­tes for natu­ral desic­ca­ted thy­roid in 2009, we all had to figure out which way to turn, since the 110-year-old natu­ral desic­ca­ted thy­roid has been a far, far bet­ter treat­ment for our hypothy­roid state than levothy­ro­xine T4-only such as Synth­roid, Levoxyl, Eltro­xin, Oro­xine, etc.

Addi­tio­nally, Armour thy­roid by Forest Labs was refor­mu­la­ted in early 2009, and patients world­wide repor­ted a return of symp­toms as well a stress on their adre­nals.  So patients star­ted an exo­dus away from Armour.

Luc­kily, the FDA loo­se­ned res­tric­tions and allo­wed us to order the Cana­dian brand by Erfa Canada Inc, called simply “Thy­roid”.   Erfa’s Thy­roid pro­ved to be an exce­llent desic­ca­ted thy­roid for most, espe­cially if they rai­sed high enough once again to rid them of symp­toms.  And since it con­tains suc­rose, patients have been able to do it sublin­gually – a method which is not neces­sary for bene­fits, but is pre­fe­rred by many.

I gathe­red a list of known Cana­dian online phar­ma­cies, which you can view on the Options for Thy­roid Treat­ment page.

And just recently, I sought opi­nions from patients about the phar­ma­cies they have used:

Uni­ver­sal Drugs­tore aka Cana­dian Phar­macy Online: This phar­macy recei­ved the grea­test kudos from US patients and with the best prices.

• Awe­some — good pri­ces and fast, friendly ser­vice. Will call your drug store and get your Armour script transferred.
• Faxed my presc­rip­tion and it was mai­led the next day. I believe it took a week and a few days to arrive to Florida.
• Great cus­to­mer ser­vice, easy orde­ring, and was chea­per than paying the co-pay with my insu­rance. It takes about 10 to 14 busi­ness days to get your presc­rip­tion, accor­ding to the com­pany, but mine came soo­ner than that and it was the holi­day mail rush season!
• Rapid ser­vice, exce­llent cus­to­mer ser­vice, email remin­ders to refill, coupons
• They had the best price and were very pro­fes­sio­nal and effi­cient.  My order arri­ved within ten days.
• I paid $43.25 for 200 60 mg pills
• Online forms were easy. I faxed my presc­rip­tions and recei­ved my Thy­roid in twelve days for $7 shipping

Phar­ma­cies Online:

• Easy to regis­ter and the cus­to­mer ser­vice was exce­llent. I faxed my presc­rip­tion. A phar­ma­cist called me to see if I had any ques­tions. I paid $45.63 inc­lu­ding ship­ping for 100 60mg pills

Cross Bor­der Phar­macy:

• Exce­llent cus­to­mer ser­vice, great pri­ces, two week arri­val from date of order, wish phar­ma­cies here were this good.

Canada Drugs Online:

• Good expe­rience, prompt (7 – 10) days ser­vice get­ting my Erfa thyroid

See more recom­men­da­tions in the Com­ments sec­tion for this post. And I’m going to hope that no phar­macy “uses” this to adver­tise their phar­macy. This is FOR PATIENT COMMENTS ONLY.

What has been your expe­rience with online Cana­dian Phar­ma­cies? Do I need to remove any from the Options for Thy­roid Treat­ment for any rea­son? Do I need to add any?

ARE YOU A CANADIAN PATIENT ON DESICCATED THYROID? Use the Con­tact Me form if you’d like to be inter­vie­wed by a well-known Cana­dian repor­ter about desic­ca­ted thy­roid in Canada. I’ll need your name and email address. You need to con­tact me before Mon­day, January 25.

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Recent blog posts worth reading:

Read a guy’s email to me about his expe­rience with doc­tors being afraid of HC, which patients know is safe and WORKS!

Will the FDA be more trans­pa­rent for thy­roid patients on desic­ca­ted thy­roid with their new initiative?

Lis­ten to the second inter­view, Epi­sode 9, I had with Dr. John C. Lowe. What a bri­lliant man!

Seve­ral years ago, a large per­cen­tage of thy­roid patients on yahoo groups like NTH were figu­ring out that they had adre­nal fati­gue, aka low cor­ti­sol, from years of adre­nals wor­king over­time due to the ina­de­quate TSH lab test, or being on the lousy T4-only medi­ca­tions like Synth­roid, Levoxyl, levothy­ro­xine, Eltro­xin, etc.

Not only does low cor­ti­sol keep desic­ca­ted thy­roid from wor­king well, it also cau­ses all sorts of angst with para­noia, depres­sion, anxiety, easy anger, sen­si­ti­vity to light and/or sounds, rec­lu­si­ve­ness, sleep issues and more.

First, patients dis­co­ve­red the impor­tance of using the 24 hour adre­nal saliva test rather than blood or urine. When low cor­ti­sol was con­fir­med, the treat­ment was using cor­ti­sol, aka hydro­cor­ti­sone, to give them­sel­ves back what their adre­nals were not, to allow thy­roid hor­mo­nes to reach the cells, and to give the poo­ped out adre­nals a rest.

And suc­cess was achie­ved! When all other issues were dis­co­ve­red and trea­ted, patients were finally able to heal their adre­nals with cor­ti­sol use, wean off, and be suc­cess­ful in their con­ti­nued treat­ment with desic­ca­ted thy­roid! That suc­cess con­ti­nues today!

Yet in spite of clear suc­cess in the treat­ment of low cor­ti­sol with sup­ple­men­tal cor­ti­sol in the correct amount for each indi­vi­dual (which can range from 15 to 40 mg gene­rally – men often need the higher end), as well as exce­llent books on the sub­ject by Wil­son, Peat­field, Jef­fries and the STTM book, patients like RD below still encoun­ter doc­tors who fill their minds with all sorts of fear and warnings:

I bought your book and later on I dis­co­ve­red your web­site which are both great. They are a superb source of infor­ma­tion and sup­port for thy­roid and adre­nal fati­gue suf­fe­rers. Thank you so much!

Per­so­nally I got adre­nal fati­gue by a sus­tai­ned lack of sleep for seve­ral years (crying babies).  I found a doc­tor who presc­ri­bed Hydro­cor­ti­sone (17.5 mg/day, 5 – 5-5 – 2.5), Flu­dro­cor­ti­sone, DHEA and Tes­tos­te­rone. Symp­toms disap­pea­red in about 2 weeks.

A first attempt to wean off after 6 months made some serious symp­toms reap­pear very quickly, so I retur­ned to the ori­gi­nal dose.

It is very stress­ful that many esta­blished doc­tors (our family doc­tor, and my wife’s thyroid-endocrinologist) are sca­ring me like hell that I am taking HC. They are saying I am des­tro­ying my body and I will never suc­ceed in wea­ning off HC.

My wife is a T4-only thyroid-patient with low-cortisol symp­toms. She also has been sca­red about des­si­ca­ted thy­roid and HC. Rea­ding your book I was howe­ver con­vin­ced she could bene­fit a lot from a bet­ter treatment…

Keep up the good work, as patients we are really left alone in the dark by our doctors…

And unfor­tu­na­tely, it’s true. Thy­roid and adre­nal patients are left in the dark by many doc­tors about a variety of issues rela­ted to bet­ter thy­roid treat­ment, adre­nal issues, low ferri­tin, and more.  So here’s where you can read more, and in turn, take this impor­tant infor­ma­tion into your doc­tors offices:

• All about the pro­blem of adre­nal fatigue
• How to treat
• Symp­toms of having an adre­nal problem
• The STTM book, which not only has more detail, but can be taken right into the doctor’s office
• Talk to other patients, inc­lu­ding a group tar­ge­ted for adre­nal fatigue

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If you mis­sed the exce­llent Part 2 with researcher Dr. John C. Lowe last Thurs­day eve­nings, you can lis­ten to the recor­ding, as well as sign up to be a Follo­wer of the Thy­roid Patient Com­mu­nity Call, here.