Patients tags

The following comment by RLC Labs, a pharmaceutical which has made desiccated thyroid like Naturethroid since the 1930′s, was sent in a letter to a pharmacy. You may find it interesting as compared to problems so many have reported with Forest Labs and the newly formulated Armour:

We have never had any mandatory or voluntary recall of any of our thyroid medications due to inconsistency in dosages. Our formulation and preparation is able to stabilize the T3 and T4 hormones through its entire expiry period (3 years from manufacturing) providing additional assurance to both physician and patient alike in quality and consistency of our strengths.

Kudos for RLC Labs and Naturethroid! Patients whose lives have changed ten-fold thanks to desiccated thyroid need a good product. (And we’re going to hope down the line that “someone” will create desiccated thyroid in a sublingual form.)

P.S. If you don’t know what has happened to Armour and patient experiences with it, scroll down.

*Want to be informed of these blog posts? Curious what’s on Janie’s mind? Just use the Notifications to the left and below the links.

*SALE! Stop the Thyroid Madness T-shirts are now 50% off just because I like sales. A great way to spread the word about our patient revolution for the superiority of desiccated thyroid over T4-only meds. You’ll also see funny bumper stickers. Also…when you order the STTM book and request it,  you get a Calvin peeing on….(you’ll see) bumper sticker for FREE, and it’s a hoot.

Armour desiccated thyroid by Forest Pharmaceuticals used to be easy to do sublingually, even if the official line was they didn’t make it that way.

And patients liked that sublingual ability with Armour.  It allowed them to work around the problem of swallowing desiccated thyroid several hours from having swallowed iron, estrogen or calcium–all which can bind some of the thyroid hormones in your stomach.

It also helped those with digestive issues, gluten intolerance or Celiac (a common problem for some hypothyroid patients) by bypassing the stomach.

But with the newly formulated Armour in 2009, it became difficult. The pill is harder with less dextrose and more cellulose.  It now fell into the ranks of all other desiccated thyroid pills, including Naturethroid and other good brands, as a more dense tablet.

But no matter what brand you use (especially the growing group of patients who are having their doctors switch them to Naturethroid), below are tips from patients on how to continue doing your desiccated thyroid sublingually. Let your doc know, too.

1) Try adding a touch of the contents of a Pixie Stix under your tongue. It’s flavored sugar in a straw, and the sugar seems to help the tablet dissolve sublingually through tissues under the tongue.

2) If you are using sublingual B12 lonzenges to treat low B12, try adding it under the tongue with your desiccated thyroid. The action of the sublingual lozenge seems to move over to the thyroid tablet.

3) Swish warm water in your mouth before you place the tablet under your tongue.

4) Crunch up the desiccated thyroid tablet before any of the above and before placing it all under your tongue.

Also note that you can swallow your desiccated thyroid. You’ll just have to make sure you don’t also have a stomach full of iron rich foods or calcium, or estrogen. Generally, it’s best to take your tablet 4 hours from any of the former. P.S. See comments below on the newly formulated Armour, and farther down, a post on Naturethroid.

*Have more sublingual ideas or experiences? Share it in the Comments section.

*Want to be informed of my blog posts? Curious what’s on my mind? Just use the Notifications to the bottom left of the links.

I’ve been sitting back silently, reading all the backlash that started with Newsweek’s Best Life or Risky Advice May 30th article, a critical analysis of Oprah’s multiple program topics of Wish Away Cancer! Get A Lunchtime Face-Lift! Eradicate Autism! Turn Back The Clock! Thin Your Thighs! Cure Menopause! Harness Positive Energy! Erase Wrinkles! Banish Obesity! Live Your Best Life Ever!

And granted, some of the criticism seems justified.

Even thyroid patients winced and squirmed when Oprah stated that a month long Hawaiian vacation and eating fresh foods with soy milk were a great way to treat her thyroid condition.  Uh huh.   Patients equally gagged at her support of Dr. Christiane Northrup who made the the nutty insensitive comment that our thyroid problems were due to an “energy blockage in the throat region, the result of a lifetime of ‘swallowing’ words one is aching to say.”

But the ensuing array of blog posts and articles following in the footsteps of the Newsweek criticism of Oprah has presented quite an irony for thyroid patients whose lives have been changed thanks to natural desiccated thyroid. Adjectives and/or descriptions of Oprah in these blogs and articles have included:

* dangerous

* peddling alternative treatments that are ineffective

* failing to present scientific evidence

* failing to listen to bona fide, medical school trained,  medical professionals

* being too gullible about the so-called wisdom and knowledge of certain patients (ala Suzanne Somers)

* failing to give more attention to science-based, status quo, mainstream medicine

Any of the above sound familiar? Yup, it sure does.

How many times have thyroid patients been told that desiccated thyroid like Armour or Naturethroid was dangerous, or raising it by symptoms rather than the TSH was dangerous. Or it’s dangerous to use because you’ll get heart problems and osteroporosis. Yet thyroid patients on desiccated thyroid have their lives CHANGED, with stronger hearts and increased bone density.

How many patients have had their doctors tell them that desiccated was ineffective as an alternative out-dated product, yet these same patients started to LIVE again with relief from old symptoms from this ineffective “alternative” medication that grandma once used.

How many articles by medical professionals are there who claim that there’s no scientific evidence to prove that desiccated thyroid is effective, in spite of CLEAR observation and reports of a huge and growing body of thyroid patients and certain doctors around the world about relief from depression, lowered cholesterol, better blood pressure, weight maintenance, hair regrowth, better stamina, less sickness and a myriad of other improvements!

How many bona fide, medical school trained,  medical professionals told us ad nauseum that our symptoms were not thyroid related (when they were), that we are “normal” because the TSH lab test says so (when we were far from it), that desiccated thyroid is outdated, unreliable, ineffective, and a ten ton load of other ridiculous comments from bona fide, medical school trained,  medical professionals.

How many doctors have told patients that they should NOT listen to other patients on the internet or Stop the Thyroid Madness because patients can’t possibly have any wisdom or know what they are talking about. Yet, lo and behold, it’s been patients and what they have learned who have started a wide-reaching revolution for better thyroid treatment that works, and a growing body of doctors are listening!

And how many times has science-based, status quo, mainstream medicine completely ruined the lives of thyroid patients because many doctors are too lazy to dare question or think outside the pharmaceutical, medical school box.

Yup, Oprah has made some blunders, gaffes and misjudgments as outlined in the Newsweek article.  She has gushed too quickly when Northrup opens her mouth or Oz walks in with his surgical garb.  But isn’t it a bit ironic that some of the criticism by others towards Oprah are the same blunders, gaffes and misjudgments which most any thyroid patient has heard about their use of desiccated thyroid, and which has all been COMPLETELY wrong.

Bottom line, for every mistake and misjudgment Oprah has made–and CLEARLY she has done so in her understanding of thyroid treatment—she just might be opening the doors to medical truth, somewhere, somehow, between it all.

Janie

Funny how things work. I had been wondering what the heck was going on with thyroid patients in the UK after the Royal College of Physicians (RCP) came out with their February 6th guideline stating that 1) thyroxine was the only medication needed for hypothyroidism, 2) “natural” medications were dangerous and 3) the only labs needed are the TSH and T4.

All the above goes totally against the life-changing experience of a growing body of patients.

Equally a part of this B-grade horror movie is the stand taken by the British Thyroid Association (BTA).  Read it. And UK-TPA thyroid patient advocate Sheila Turner began to go through her own hell when her Armour was taken away, which you can read about in the February 20th blog post here.

And suddenly, I get an email from Sheila, informing me that the RCP stand is as bad as it was three months ago for her and other thyroid patients.

Sheila states: This is absolutely unbelievable that out of the hundreds of references we sent to the Royal College of Physicians to show their guideline to be flawed, they have taken no account of one single one of them. They are publishing their previous guidance without one since change. The world has gone mad.

Dear Sheila, Further to my email of 6 April, the comments and materials received by the College have been reviewed. This position statement or guidance (not a guideline) was produced on behalf of the Royal College of Physicians, in particular its Patient and Carer Network and the Joint Specialty Committee for Endocrinology and Diabetes; the Association for Clinical Biochemistry; the Society for Endocrinology; the British Thyroid Association; the British Thyroid Foundation Patient Support Group and the British Society of Paediatric Endocrinology and Diabetes and is endorsed by The Royal College of General Practitioners. The President has asked me to let you know that this review has not resulted in any changes to that statement.  It should be noted that it is about the treatment of primary hypothyroidism and does not preclude other treatments for exceptional cases by specialist endocrinologists who can make clear to patients any associated risks. References supporting the statement are listed below. Yours sincerely, Catharine Perry Administrator •   Diagnosis and treatment of primary hypothyroidism. BMJ 2009;338:b725 •   Vaidya B, Pearce S. A Clinical Review of the management of hypothyroidism in adults. BMJ 2008;337:a801. This contains references for 35 articles and states that Armour thyroid is of no proved additional benefit to levothyroxine. • The Lancet Volume 363, Issue 9411, Pages 793 – 803, 6 March 2004.  This covers the history, epidemiology, pathophysiology, and clinical diagnosis and management of hypothyroidism and is written by Caroline GP Roberts and Paul Ladenson of Johns Hopkins University School of Medicine, Baltimore, USA.  This review, which references 164 clinical articles, states that the treatment of choice for hypothyroidism is levothyroxine sodium (thyroxine) and does not refer to Armour thyroid. •  Baloch Z, Carayon P, Conte-Devolx B, et al. Laboratory medicine practice guidelines. Laboratory support for the diagnosis and monitoring of thyroid disease.Thyroid 2003;13:3-126. •  Association of Clinical Biochemists BTA, British Thyroid Foundation. UK Guidelines for the use of thyroid function tests. http://acb.org.uk/docs/tftguidelinefinal.pdf •  Surks MI. Ortiz E, Daniels GH, et al. Subclinical thyroid disease: scientific review and guidelines for diagnosis and management. 2004;291:228-238.

And as your peruse the six references above which they use to defend their tunnel-visioned, moronic position, you realize that you, your words, and your positive-outcome experience on desiccated thyroid, as well as the use of far better labs, is about as important within the UK’s latest medical pronouncement as is dirt on the bottom of a rusted bucket in the middle of an empty field in nowhere. Yup.

Or as Harold Shipman stated about the RCP’s guidelines: What a brilliant wheeze.

******************************************

See below on the potential importance of potassium in your health and well-being. And on the May 7th post about the party being over with Forest Pharmaceuticals, comments continue to come in about experiences with the “new” Armour.

With the recent blog post by health writer Mary Shomon concerning Dr. Sidney Wolfe’s new 4-year term with the FDA’s Drug Safety and Risk Management Advisory Committee, there has been much brooha and fear-mongering on thyroid patient groups.

Why? Well look at it this way. This is a man of stature. He is an MD, an Adjunct Professor of Medicine, the director of Public Citizen’s health research group which promotes drug safety and public health, and editor of the newsletter Worst Pills, Best Pills, and since August of  ’08, a member of the Drug Safety Committee.  He also has a resume a mile long.

Yet in spite of his seemingly caring activism for our health and well-being, and his immense experience and education, he is clearly and completely off-base about Armour and other desiccated thyroid prescription drugs.

For example, as as editor of the Worst Pills, Best Pills newsletter,  Wolfe declared Armour desiccated thyroid as a “Do Not Use” product because it is not adequately guaranteed to provide appropriate blood levels of thyroid hormone and reliable alternatives are available”. (Gee, funny how our experiences are completely otherwise….)

Then in the May 2003 issue (of which you have to have a paid prescription to read), he wrote an article titled  “Do Not Use! Natural or Desiccated Thyroid (ARMOUR THYROID) For Thyroid Hormone Replacement Therapy.” In that article, the clueless Wolfe stated that he supported The American Thyroid Association’s statement “There is no evidence that desiccated thyroid, a biological preparation, has any advantage over synthetic thyroxine.” (I guess millions of us and our improved heartrate, stamina, cholesterol, depression and more…aren’t evidence?)

He then proposes that Armour is mostly prescribed for weight loss, is a niche market for the unscrupulous, and concludes with “if you are offered natural thyroid hormone replacement treatment for any reason, this is a red flag and you should get a second opinion.” In a letter to consumers, Wolfe and Public Citizen state that that T3 is only needed from conversion and is predictably found from conversion, that the T2 and T1 also found in desiccated thyroid has essentially no activity, that desiccated thyroid is an unpredictable mixture, that is has no predictable biological activity…plus so many more complete and total inaccuracies based on “intellectual head chatter” not on observation and experience.

Thud.

Mary Shomon, in 2003, did a bang-up job trying to communicate with Wolfe, Worst Pills, Best Pills, and Public Citizen about the inaccuracies of their beliefs and statements…basically to no avail. The TRUTH is here, and in more detail in Chapters 1 and 2 in the STTM book which are enlightening those reading it all!

So we are left wondering, six years later, what his four-year appointment to this committee will mean. But let’s make a few things quite clear to contrast some of the fears going on and expressed on thyroid groups:

1) Armour is not being banned.
2) Wolfe is one of a current 9 members of this committee. Wolfe is not “the committee”.
3) Wolfe and seven others currently have voting rights. He is the only “Consumer Representative”.
4) There are still six more vacancies.
5) The committee is NOT the power. They simply make recommendations. And historically, the FDA can be slow to act on their recommendations, or doesn’t follow them at all (which is a GOOD thing when it comes to a SAFE and EFFECTIVE medication like desiccated thyroid).

So what can you do? I challenge you to follow and act on the below, which puts our energies into communication, not feeding the ego and power of a misguided man with our overtly expressed fears as if they have actually come to pass :

1) Remember 1-5 above. Armour is fully available. Keep the facts straight, and fear-mongering down.

2) STTM has a powerful and growing page of testimonies of those who switched to desiccated thyroid.  Are you in there? If not, you need to be. This website currently has a huge audience. It’s noticed by doctors all over the world, as is the STTM book, which is YOUR book of YOUR experiences,  which is also being ordered by doctors. Use the Contact Me form at the bottom of that page.

3) Tell your experience with Synthroid or other thyroxine medications at the following websites:  www.rateadrug.com,  www.drugs.com,  www.askapatient.com They don’t include any of the desiccated thyroid meds yet, but you can tell of the negative experiences with all the T4-only drugs, including adrenal fatigue if you fell into that, and all your lingering thyroid symptoms.  The above links will take you to their Synthroid page–you can search for the other T4 meds.  Remember to mention Armour or other desiccated thyroid meds and how they have helped you!! Update: thyroid patient Gina found the drugs.com Armour page: http://www.drugs.com/comments/thyroid-desiccated/armour-thyroid.html

4) Report your T4-only experience to MedWatch, the FDA’s  program for reporting problems.  You will see an Online Reporting Form to download. Don’t fail to mention which problems were removed or greatly improved when you switched to Armour, or the fact that you now have to deal with adrenal fatigue thanks to the inadequacy of T4-only treatment. You can also call 1-800-FDA-1088, but remember: your call is not to draw attention to Wolfe’s opinions! It’s to draw attention to how lousy a treatment T4 is as compared to how much better Armour has been.

5) Go to my article titled Synthroid Sucks: the Rallying Cry of Thyroid Patients vs. Clueless Doctors and comment on this article, including mentioning what Armour, Naturethroid or other desiccated thyroid did for you. Rate it as well. Both keep this article in the media and in the eyes of others.

6) Go to www.medications.com where patients ask questions and YOU can answer, mentioning YOUR experience and how much better desiccated thyroid has been. Clicking on that will take you to the Synthroid patient questions. Answer them. Be careful with links–they may not catch them at first, but will remove them if they do.  You can mention website names, tho, like Stop the Thyroid Madness.

7) Send people here to follow all these steps. Power is in numbers!

8 ) Use the following website to email or write your senators and representatives: http://www.visi.com/juan/congress/ THEY DO READ THEM. And they will remember this!  Here’s a template letter you can use:  www.stopthethyroidmadness.com/template-letter-to-your-senator-or-representive/

If you have other ideas and places to write or call, add your comment to this post. Remember,  put your power in communication! LOTS of communication.

P.S. Did you know that the American Thyroid Association, in cooperation with the American Association of Endocrinologists, together support January as “Thyroid Awareness Month”…which is supported through an unrestricted grant from Abbott Laboratories, the makers of Synthroid?? Major UGH.