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Gee golly bazooka: guess who started a conversation with me?

SumoWrestlersYesterday, I was meandering through a small biking/river runners store, exchanging a vest I got my son for Christmas that turned out to be too large, and looking intently for a replacement gift he’d like.

The only other shopper left—a tall, dark and handsome young man. And almost as quickly, he re-entered,  approached me, and asked if that was my car out there.

“My car?” I replied. “Yes, why?”

“I’m curious about the sticker you have on your back window,” he stated with a friendly but curious smile.

The sticker is of Calvin peeing on the word of a particular T4-only medication.  I give these away free if someone requests it with their current order of the STTM book.  And this was not the first time I’ve been asked about that attention-getting sticker.

So I proceeded to tell him that I’m a Thyroid Patient Activist, owner of Stop the Thyroid Madness, about the history of T4, how lousy many patients have reported doing on it for nearly 60 years with their own variety and intensity of lingering hypo symptoms, and how much better natural desiccated thyroid has been for patients all over the world.

I then innocently asked: “Are you on Synthroid?” I just knew I had one more victim of this treatment who needed enlightenment.

“Nope”,  he said with a confident and defiant air.  “I have until recently been a pharmaceutical rep with Abbott Labs.”

THWACK.   Standing before me stood a mighty well-trained Big Pharma champion for Synthroid who was going to reveal and defend his propaganda like a master. And that led to the most heated and piercing give-and-take I’ve ever experienced, right in front of the chagrined and wide-eyed sales person at the checkout desk. We were like sumo wrestlers butting our words against each other.

When I explained the slew of continuing symptoms reported by patients worldwide who have been on T4, and no matter how high they raised it…his response?  “Those symptoms can be the result of many issues other than hypothyroidism.”

I responded: “Well isn’t it odd that those who are hypo and on Synthroid, and who get on desiccated thyroid, find those symptoms completely removed.”

His reply?? “Heroin can do the same thing”.  Groan. I simply had to laugh at him. How many times have we heard the same kind of baloney.

He proceeded to tell me in great detail with each point he made that:

  1. He has worked with many patients and they do well on Synthroid (A rep has worked with many patients? And what in the world does “well” mean?)
  2. Clinical trials have proven that Synthroid works. (Ah! You mean those financed by Abbott Labs and which are contrary to the reported experience of millions of patients around the world? Those??)
  3. The TSH lab test gives proof about the efficacy of T4 (Funny how patients all over the world have proven by their continuing symptoms that the TSH lab test for the diagnosis and treatment of hypothyroidism belongs at the bottom of a trash heap)
  4. There are many differences in the efficacy of T4 brands to explain any issues in patients (Funny how not ONE brand of T4 has been exempt from leaving continuing symptoms according to the global rexperience of a huge body of patients) 
  5. Blaming T4 for the amount of adrenal fatigue that “supposedly” some T4-treated patients find themselves with is silly since there can be other reasons for it. (Another laugh on my part.  Clearly, when someone isn’t adequately treated on T4, something has to kick in to keep them going, and voila–it’s those trusty dusty adrenals which eventually just poop out thanks to T4 and the TSH.)

There were much more machine gun stances between us, but that would make this blog post far too long.

One truth we did agree on? That “some” patients do get benefit from using T4. He specifically referred to the elderly. And my quick response? Why accept “some” when patients all over the world report getting rid of that “some” with desiccated thyroid (and especially for certain ones who also treat their low cortisol, low ferritin, and other issues most likely related to an inferior treatment.)

Clearly, we were each deadlocked in our positions.  And he concluded, looking at the sales associate, that neither of us were wrong; we just represented two sides.

And I turned my head, looked him straight in the eye, and said:  Uhhh, no. YOU are completely and totally wrong.

P.S. After he left, the sales gal said she was totally in tune with what I was saying, and wrote down the name of this website. lol lol

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See the blog post below about favored Canadian pharmacies, plus many more comments by patients.

What the heck is going on with desiccated thyroid and current shortages? Read about it here.

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Are online Canadian Pharmacies cutting it with US thyroid patients on desiccated thyroid?

pills2-1(Though this post was originally written in 2011, it has been updated to the current day and time. Enjoy! At the end of this post, you’ll see more updates to read on this topic.)

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 (2010), 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 (2010)
  • 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 (2010)

Cross Border Pharmacy:

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

Canada Online:

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

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?

UPDATES TO ALL THE ABOVE:

Check out how Canadians felt about their healthcare situation as well as thyroid treatment on this October 2015 blog post: //www.stopthethyroidmadness.com/2015/10/20/canadian-thyroid-patients/

Though written in Sept, 2014, comments continued through 2016 about BAD batches of Erfa: //www.stopthethyroidmadness.com/2014/06/12/part-ii-erfa-canada-says-new-thyroid-pills-are-fine-thyroid-patients-worldwide-exclaim-hog-wash/

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Other 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!

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A guy’s story: scaring the hell out of him about being on HC cortisol!

FEAR

(This page has been updated to the present day and time. Enjoy!)

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. Blood cortisol measures both bound and unbound cortisol, and we noticed in some, it could cause levels to look high (when saliva proved it was low as did symptoms), or vice versa.

When low cortisol was confirmed via saliva testing and symptoms, the treatment was using cortisol, aka hydrocortisone, to give themselves back what their adrenals were no, to allow thyroid hormones to reach the cells. If saliva results showed only moderately low cortisol, adrenal cortex was used. The right amounts of cortisol was achieved via doing one’s Daily Average Temps.

And success was achieved!

When all other issues were discovered and treated, ranging from being on a better thyroid treatment, to bringing iron and B12 back up to optimal levels, to bringing high heavy metals down, to treating Lyme…on and on….patients were finally able to wean off, and be successful in their continued treatment with desiccated thyroid and/or T3! That success continues today!

But ignorance abounds in the medical profession

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 either the adrenals issue so many of us face, or how to correctly treat it.

What you can do

Here’s where you can read more, and in turn, take this important information into your doctors offices:

Click on the graphic above to order an excellent saliva cortisol test.

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Dr.JohnCLowe

If you missed the excellent Part 2 with researcher Dr. John C. Lowe last Thursday evenings, you can listen to the recording, here.

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Dr. Lowe is coming to our party–listen directly or ask him questions one-on-one

Dr.JohnCLoweThis coming Thursday, January 7th, Dr. John C. Lowe DC, PLLC will be joining me for the Talkshoe THYROID PATIENT COMMUNITY CALL and it’s one you don’t want to miss.

Dr. Lowe has been highly respected by thyroid patients for years for the excellent information he has disseminated about better thyroid treatment on his website drlowe.com.  In fact, he’s one of a handful of doctors that I mention with gratitude in the Acknowledgements of the Stop the Thyroid Madness book.  His website and wise understanding played an empowering and self-educating role in the early movement by patients for better thyroid treatment with desiccated thyroid and better labs.  You can read his own written biography here.

Mark your calender and set your cell phone alarm: the Community Call starts at 9 pm Eastern, 8 pm Central, 7 pm Mountain and 6 pm Pacific.  You can log on anytime within 15 minutes before the call starts and participate in the Chat box. That same box will be right there during the entire call.

The entire live audio chat with Janie and Dr. Lowe will come right on your computer, so remember to turn your audio up.

Additionally, those who log in can also choose to call in and ask Dr. Lowe direct question. Don’t miss this great opportunity!

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

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See the blog post below 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.

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Erfa’s “Thyroid” has been our saving grace–here’s more info from Dr. Knafo and Erfa!

erfalogoThe 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 2nd 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!

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