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Speak your truth to the American Association of Clinical Endocrinology (AACE)!

megaphoneA grass-roots campaign has been started by thyroid patients after the glorious AACE comment that “the TSH is best in most cases”. From ThyroidChange:

THYROID FRIENDS, TELL THE PROMOTERS OF TSH TESTING AND LEVOTHYROXINE (T4) TREATMENT WHAT YOU THINK!!!

PLEASE tell the ATA and AACE how YOU feel about their treatment guidelines that encourage TSH only testing and treatment with Levothyroxine (T4) only.

WE NEED CHANGE NOW!

Please write something that explains how their emphasis on the TSH test and Levothyroxine (T4) only treatment has impacted your life and health. Write as LITTLE or AS MUCH as you want. JUST WRITE!

Tell these organizations the consequences of their guidelines.

The way to do this is to post your comment on the first link and then copy & paste it on the other 3 links:

ATA FB post regarding their 2012 guidelines:https://www.facebook.com/ThyroidAssociation/posts/228435853958522

ATA main wall:
https://www.facebook.com/ThyroidAssociation

AACE FB post regarding TSH supremacy:
https://www.facebook.com/TheAACE/posts/757086797712215?comment_id=2587944&notif_t=like

AACE main wall:
https://www.facebook.com/TheAACE

POST THE COMMENT YOU MADE ON ANY OF THE ABOVE…also as a comment below. Let’s share what we are posting.

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SEND A VISUAL MESSAGE THAT YOU WANT THIS THYROID TREATMENT MADNESS TO STOP!!

See the new campaign here: flatsttm.com  Just have a photo taken of you in front of some kind of landmark where you live, holding your STOP THE THYROID MADNESS sign!

You can also add under the STTM name: THE TSH LAB TEST FAILS US! Or T4-ONLY IS NOT THE BEST TREATMENT!!  Or I SUFFERED BECAUSE OF THE TSH LAB TEST AND T4-ONLY. etc

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Touching message from a near-91 year old New Zealand resident who feels his government is keeping him sick…

Screen Shot 2015-08-10 at 10.38.26 AM(Though this post was originally written in 2012, it is still appropriate even today! Enjoy!)

I am impressed if ANYONE over 70 years old is active on their computers, especially because they didn’t grow up with one, nor did their own children. So when I get a message via Facebook from a near 91-year-old man in New Zealand who clearly knows his stuff, I am doubly impressed.

But this story is poignant, aggravating, and the very reason Stop the Thyroid Madness exists–to educate YOU in the face of medical and government leaders who are completely clueless! Do we have to wait for our current crop of government officials to be forced or voted out of office  before we see this thyroid diagnosis and treatment travesty stop???

Dear Janie, I am 90 years and 10 months old, and have a TSH of 3.5 . My doctor, using the range of 0.4 to 4, declared me OK and not hypothyroid. This margin is used by the New Zealand Governments Ministry of Health (M.O.H). My letters to the M.O.H. of New Zealand to read the article written by the AACE in America of  January 2003 (to bring down the margin to 0.3 to 3.04) were not taken into consideration.

I am a permanent resident in New Zealand. Because of my repeated requests, they even blocked my letters to them, and in the meantime, leaving me suffering. Have been suffering about 3 years with “Chronic Fatigue Syndrome”.  Found your articles on the Internet and bought your book Stop The Thyroid Madness.

My doctor gave me Synthroid and when it didn’t work, wanted to raise the dosage. Fortunately I was in possession of the book Overcoming Thyroid Disorders by David Brownstein M.D. and refused. Indeed, I share all the “Common Experiences We All Share” as written in your book . My doctor has even referred me to a Psychiatrist—unbelievable! Of course I told the Psychiatrist who works for the N.Z. Public Health Department straight away that I will have nothing to do with him. Just to do something, he wrote me a prescription for a drug used for people who are lunatic. Gave the prescription to the doctor to throw it in his rubbish bin!

Am now looking for a knowledgeable N.D. but have not succeeded yet . They are either not knowledgeable enough about thyroid disorders or too expensive for my pensioner income. Have obtained dessicated thyroid from a compounding pharmacist, but don’t dare to take it without guidance. In the meantime, I have to eat frequent small meals just to prevent awful anxiety attacks or to feel reasonably well ..and the doctor calls me euthyroid?

Well Janie, that is my story. Am so glad that you have written your book, thanks, and that I just today received it by mail order on the Internet. With my best regards – ****

P.S. Of course you can publicise my letter to you. Hope that it will help a bit in our struggle to get proper treatment and that people all over the world will know how indifferent governments can be.

THINK THIS PROBLEM IS ONLY WITH NEW ZEALAND? PATIENTS AROUND THE WORLD SHARE THE SAME STRUGGLES!

Sheila Turner, a Thyroid Patient Advocate in the UK and creator of TPA-UK, has worked tirelessly to change the DARK AGE medical treatment protocols that UK thyroid patients have to endure. Here is a letter she wrote July 2012 to the President of the Royal College of Physicians in one of many attempts to change the inane poor practices: http://www.tpa-uk.org.uk/Report_RCP_et_al.pdf

DR. JOHN C. LOWE’S WEBSITE “THYROID SCIENCE” BACK UP!

http://www.thyroidscience.com/

JanieSignature SEIZE THE WISDOM

New to this?

* Read why the TSH lab test can be a huge failure. 
* See why Synthroid or any other T4-only med can be a problem, sooner or later.
* To read what happens when your brain doesn’t get enough of the thyroid hormone T3, go here.

* To have the Stop the Thyroid Madness revised book in reach for reference, go here.

* To get more tips, inspiration and information, Like the STTM Facebook page.

30 replies

Thanks to Dr. Lowe for a very valuable call last night

Dr.JohnCLoweAnyone who listened to the Thyroid Patient Community Call last night will know that we were listening to a powerhouse of a man with an encyclopedia of valuable information: Dr. John C. Lowe.

He is the author of an exhaustive book on Fibromyalgia called The Metabolic Treatment of Fibromyalgia, which explains how the proper diagnosis and treatment of hypothyroidism is a good choice in the treatment of fibro. He also owns drlowe.com and the research website Thyroid Science.

I already knew he was great. He’s listed in the Acknowledgements of the Stop the Thyroid Madness book as one of a handful of medical professionals who played a huge role in educating and empowering patients all these years.  He, like the others, was a springboard for patients to move forward in gaining far better information about thyroid treatment and everything else we have have learned over the years!

And he has agreed to come back, since we had many more questions to ask him! I’ll announce that when we secure a date.

Below are some highlights from our talk with Dr. Lowe:

  1. The use of high dose B-vitamins is very important for the thyroid patient, and even more so when you are feeling better in your treatment. Thyroid increases the production of protein, which drives energy, and you’ll need the B’s to help this higher energy production.
  2. Sadly, it’s economics which dominant science and and researching, and it’s all for marketing purposes instead of the pursuit of truth and the real health of patients.
  3. What drives your medical investigations? To gain wealth, or to help patients?
  4. 75% of the time, if a doctor uses the TSH to either diagnose hypo or treat it, he will be wrong.
  5. In the 1980’s, the top of the TSH range was 7.5.
  6. Abbott Labs, the makers of Synthroid, gives one million dollars in an unrestricted educational grant to the American Association of Clinical Endocrinologist (AACE) i.e. no wonder Endocrinologists have a love affair with Synthroid, a medication like other brands which has left the vast majority of us undertreated. You can read more details from Lowe on this subject here.
  7. Isocort, an OTC treatment for low cortisol, is protected by the 1994 Dietary Supplement Health and Education Act.
  8. HC, aka hydrocortisone, is water soluble. Isocort is fat soluble. People need bile so the lipase enzymes are able to work on it.
  9. There are no studies to compare Isocort to HC, and should be.
  10. If swallowing, take thyroid one hour before eating for best absorption. If meal will have a lot of fat, 3-4 hours before eating.
  11. Elderly people have less Hydrochloric Acid and do a worse job absorbing nutrients. (And so do undertreated hypo patients, reminded Diane)  Betaine is a good supplement to help.
  12. Why it can be a bad idea to swallow thyroid with meals: we never know how many compounds are in the food that will bind it, like calcium and iron.  T4 is the most badly absorbed.

To hear more, just click above and listen to the recorded call. Thank you for being you, Dr. John C. Lowe.

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icicles2BRRRRR. In the US and many other countries,  we are having one of the coldest winters we’ve seen in a long time. And if you are out in it alot, you may need a tad more thyroid meds to keep yourself optimal.

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Glad to see some reason creeping in with thyroid patient discussion!

IMG_2564If you have been keeping up with my posts, you’ll know that thyroid patients have been facing a shortage of desiccated thyroid for many weeks, probably due to sharp increased demand i.e. thyroid patients have been finding out how lousy T4-only treatment like Synthroid has been for them, and how much better desiccated thyroid is.

That demand became especially true after a reformulation of Armour by Forest Labs in 2009 drove patients to RLC’s Naturethroid and Westhroid. The “new” Armour caused a return of hypo symptoms plus new maddening ones, including palpitations and sleep problems never seen before.  As Julia Roberts said in the 1990 movie Pretty Woman: Big mistake, Big, Huge.

In addition, it didn’t help when Time Cap Labs, a pharmaceutical which made plenty of desiccated thyroid for other pharmaceuticals, stopped production after being contacted by the FDA. This action was probably in line with their aims to make long-term unapproved drugs become approved, even if the timing was incredibly stupid.

As all the above was happening, panic ensued!

We’ve heard all varieties of negative presumptions from thyroid patients about what caused the shortage, including an FDA conspiracy and an overt belief that desiccated thyroid is about to be removed.  Patients have threatened law suits, blamed pharmaceuticals, and/or sent numerous letters to FDA pleading to keep desiccated thyroid as if it was to be gone tomorrow. Even I, at first, fell in line wondering about the FDA.

But it started to dawn on me, as it has others, than we have been jumping the gun, not giving enough emphasis to facts and reason.

And finally, facts and reason are starting to appear on blogs and groups:

1) Yes, Forest Labs, the makers of Armour, and RLC, the makers of Naturethroid and Westhroid, state they have not been contacted by the FDA. We have no reason to disbelieve them!

2) Yes, RLC is working hard to catch up, as is American Laboratories, both state. We also have no reason to disbelieve them!

3) Yes, thyroid patients who know the superiority of desiccated thyroid have always been there to support them. Glad to see that recognition in blog and group postings.

4) Yes, as health writer Mary Shomon has stated, information-gathering, brainstorming, and communicating with our doctors is a good thing to be doing.  That is contrary to making panicky negative predictions about desiccated thyroid,  rallying for law suits, and feeding ideas to the FDA that may not be there in the first place.

5) Yes, we need to put energy in letting the world know about the superiority of desiccated thyroid treatment in our lives. That is where our power lies in the face of clueless Endocrinologists and their equally-clueless medical boards like AACE.

6) Yes, we need to listen to and support the pharmaceuticals and laboratories which give us the desiccated thyroid we need. It’s they who have to walk the line with the FDA. Let’s listen to their cautions and support them.

Strangely, there are still misconceptions being reported by patient blogs and posts:

1) That we don’t know what caused the shortage. But we do! Demand is as logical as it gets.  All of us have succeeded in getting the word out! That is exactly why I created STTM in the first place!  And by emails I get every week, it’s clear that it’s been working.

2) That groups like the Coalition for Desiccated Thyroid (CDT) have a wait-and-see attitude. That is as silly as saying STTM wants to ban T4 or encourages self-treatment. There are simply some thyroid patients who don’t agree with the extreme panic and negative presumptions that have been going on, and want more reason in our pro-activity!  Patients have been encouraged to spread the word in any way possible about the superiority of desiccated thyroid and how it’s changed lives, NOT to feed dire negative predictions which only end up giving ideas we don’t want to give! You are most welcome to join the Coalition above in addition to other groups.

Good for patients and advocates alike for putting more reason and fact in this situation.

I’m also glad to see some strategic, pro-active behind-the-scenes work going on as a just-in-case line of activism. That is the way it should have always been–a plan for action “just in case”, not dire predictions and fear mongering as if it all WAS going to happen.

We’ll get through this, folks. Here are options for thyroid treatment in the meantime. And if you want to talk to other patients, join our thyroid patient Community Call this Friday. Details are found in the September 7th blog post.

37 replies

What the recent Medco scandal is actually telling us–i.e. there’s more to this story

medcoI have been watching with interest the past week about the justified ire of patients being expressed all over patient groups in the internet. And in case you’ve been too busy with school starting or end-of-summer activities, it involves one of the nation’s largest mail order pharmacies as well as the largest Pharmacy Benefits Manager (PBM):  Medco.

In a statement you can read right on their website, they state:

1)  there is a “nationwide shortage of porcine-derived desiccated thyroid”
2)  they are “uncertain about continued availability.”
3)  “ask your doctor if a synthetic thyroid medication, such as levothyroxine is right for you.”

In Medco’s direct message to doctors, they state;

1)  desiccated thyroid does not have the U.S. Food and Drug Administration (FDA)  Federal Drug approval”
2)  the FDA  “may remove any remaining unapproved products from the market.”
3)  the shortage is due to this “uncertainty”.
4) “the American Association of Clinical Endocrinologist recommends levothyroxine over desicccated thyroid, liotrix, combination of thyroid hormone, or triiodothyronine (T3) for the treatment of hypothyroidism.”

Clarification on their statements

If you are just now finding out about this,  do note the following:

1) There is not a nationwide shortage of all desiccated thyroid. There is a shortage of Armour because of its 2009 reformulation. (See my blog posts below about problems with the newly formulated Armour.)
2) Naturethroid by RLC Labs continues to be available. They are working hard to keep up.  See my post on Naturethroid.
3) Desiccated thyroid was around long before the establishment of the FDA, so they are grandfathered in and still work with the FDA guidelines.
4) There has been no statements by the FDA that they are removing desiccated thyroid.

An even more important revelation in this entire Medco scandal

There is actually an underlying message in the entire Medco fiasco that you should find even MORE disturbing: the continued  promotion of T4, aka levothroxine, as an adequate treatment of hypothyroidism.  And this is not just a faux pas of Medco, it continues to be the ignorant opinion of far too many doctors, medical schools and medical boards. All you have to do is look at what has happened in the UK with the Royal College of Physicians to see the idiocy abounding.

Over 100 years ago, desiccated thyroid was found to be an excellent treatment for hypothyroidism.  I give precise details about the first use of desiccated thyroid in Chapter 2 in the Stop the Thyroid Madness book. It worked!

But in the early 1960’s, the tide turned thanks to a batch of desiccated thyroid that turned out not to be what it said it was.  This is documented in the 1970 Pharmacological Basis of Therapeutics.  And pharmaceuticals, especially  Knoll Pharmaceuticals who first tableted levothyroxine aka Synthroid in 1955,  jumped to promote T4-only as a “new and modern medication”.  (See page 41 and 42 in the STTM book).  And doctors and medical schools fell for it hook, line and sinker.

And to this day, levothyroxine continues to be purported as an acceptable and logical treatment choice for hypothyroidism.  But patients all over the world beg to differ.  T4 medications like Synthroid, Levoxyl, Eltroxin, Oroxine and others simply leave all patients with their own unique amount and degree of lingering hypothyroid symptoms, no matter how high you raise it.

I also find it hugely disturbing to refer to AACE (American Association of  Clinical Endocrinologists) as if they are the grand poopah of knowing what’s right for thyroid patients. They are NOT.  Millions of thyroid patients who have switched to desiccated thyroid, T3, or a combo of T4 and T3 will tell them hands-down that they have gotten FAR better results, and most especially with desiccated thyroid like the “old” Armour, and now Naturethroid.

Visiting numerous thyroid patient groups will reveal how patients feel about Endocrinologists they have visited throughout the years.  Their experiences are far from flattering. In other words, with a few exceptions, thyroid patients are NOT impressed with Endo’s.

Medco’s statements are definitely a concern for patients and range from presumptous to unfactual.  But those statements only represent a far wider problem around the world in the medical community.  Clinical presentation and wisdom has been thrown out the window by doctors.  So patients have to continue spreading the word about the far superior treatment of desiccated thyroid, and their problematic experience with T4.

Want to be informed of these posts so YOU can be informed? Curious what’s on Janie’s mind? Use the Notifications on the left at the bottom of the links.

***50% off sale!! All STTM t-shirts are now on sale. I love sales. Not only do they help support this site, they are a great way to spread the word. Go here.   Did you know that Laughing Grape Publishing will send a STTM book directly to your doctor?

13 replies