T4-only tags

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.

Yesterday, 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.

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.

There was a time when I thought being hypo without a thyroid was really no different than being hypo with one.  Hypo is hypo.

But I was wrong. There really is a difference in our journeys–even if we both end up with hypothyroidism—and four strong ones:

1. It’s no picnic to lose one’s thyroid. Surgical removal, called a thyroidectomy,  can come with neck soreness, loss of one’s voice, and other complications. including the loss of parathyroids.  Treatment with RAI, or Iodine 1-131 to kill the thyroid, has it’s own lifelong side effects, including gastrointestinal issues, parotid salivary gland problems, and more.  A good website about the controversy of RAI is atomicwomen.org.
2. The stress of surgery and/or RAI can do a number on one’s adrenals. I suspect that there is a high percentage of those who had surgery and/or RAI who also have adrenal fatigue with it’s nightmarish side effects, whether simply from the physical stress of removal and/or treatment, or having a Synthroid, T4-only obsessed doctor.  Being on T4 is the number one predictor of adrenal fatigue.
3. Some have a unique anguish about their vulnerability. No one can live without a thyroid.  And that thought with the absolute lifelong dependency on thyroid meds is not a comfortable state.
4. Life long regret can be huge. Many patients came to realize, after removal, that they may not have needed the removal at all if they had known about the fallacy of the TSH lab test, or the idiocy of T4-only meds, or potential benefits of iodine, or natural desiccated thyroid like Naturethroid, compounded, or Erfa Thyroid.

Read the latest personal and gut-wrenching blog post by thyroid cancer Stephanie Buist, who is thyroidless after treatment for thyroid cancer nearly 10 years ago.  Also see the Talk to Others link below to find the Thyroidless yahoo group.

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Curious what’s going on with Naturethroid or Westhroid production and availability? RLC Labs has a Patient Information Line you can always call for the latest information on Naturethroid and Westhroid availability: 877-600-4752.

Want to write a post for the STTM blog?? Beginning in 2010, I will be reviewing and accepting “thyroid patient guest posts” on the STTM blog in between my own. You can read about it here: www.stopthethyroidmadness.com/writing-a-guest-blog-post-on-sttm/

Want to honor someone who has helped you?? See the blog post below and thank someone.

NOTE: if you were receiving email notifications about these posts,  the company doing them is out of business. Instead, use an RSS Feed.

The 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!