CANADA

I recently attended a lecture at a restorative medicine conference (kinda snuck in), and had a wonderful chat with a surgical nurse from Canada who is on Armour and didn’t even know about Erfa–the Canadian version of desiccated thyroid simply called “Thyroid”. She was thrilled to find out about it, but it was shocking to me that she didn’t know about a VERY good desiccated thyroid product right on her turf!

But even more concerning to me was being reminded that Canada has a severe shortage of doctors. Because that means it can be even harder for Canadians than Americans to find a good doctor when it comes to better thyroid treatment. It’s hard enough here: how it must be in Canada is chilling. And even if you do find one–because there are some there–the wait has to be long.

ARE 90% OF ALL MEDICAL STUDIES and CLINICAL RESEARCH WRONG?

Yes, according to meta-researcher and influential scientist Dr. John Ioannidi, and which was outlined in the recent issue of The Atlantic by David H. Freedman. Freedman states:  Much of what medical researchers conclude in their studies is misleading, exaggerated, or flat-out wrong.

AND DO THYROID PATIENTS EVER KNOW THIS TO BE TRUE!! How many studies are there that imply that T4-only medications work ever-so-brilliantly, yet our experience with T4-only has profoundly debunked that “research outcome”.

Patients have noted that much of what is achieved in research is to obtain money for those sponsoring the research, i.e via the sales of the product studied, like T4.  Even Freedman states:

This array suggested a bigger, underlying dysfunction, and Ioannidis thought he knew what it was. “The studies were biased,” he says. “Sometimes they were overtly biased. Sometimes it was difficult to see the bias, but it was there.” Researchers headed into their studies wanting certain results—and, lo and behold, they were getting them. We think of the scientific process as being objective, rigorous, and even ruthless in separating out what is true from what we merely wish to be true, but in fact it’s easy to manipulate results, even unintentionally or unconsciously. “At every step in the process, there is room to distort results, a way to make a stronger claim or to select what is going to be concluded,” says Ioannidis. “There is an intellectual conflict of interest that pressures researchers to find whatever it is that is most likely to get them funded.”

Hooray for Ioannidi!  Thyroid patients have royally suffered for over 60 years partly due to poor research outcomes favoring T4-only treatment, and we appreciate individuals like this man for exposing the truth! To read the entire brilliant article, go here.

IS ARMOUR CHANGING BACK…OR WHAT IS GOING ON?

Rumors often start on the patient groups, and I usually just note them, and do nothing. But one rumor which continues is that Armour tablets by Forest Labs seem to be back to the old formulation. One gal emailed me and said her bottle seemed to contain both the newly reformulated Armour (harder, unable to do sublingually) and the older version (softer, can be done sublingually.  What’s that about??  It’s odd.

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The Society for Endocrinology in the UK recently reported that taking higher doses of thyroxine (which will lower the TSH lab result) may be safer than has been purported for decades.

And how low a TSH lab result did they find to be safe? As low as 0.04-0.4, the research found, is still safe enough to not cause an increased risk of  “heart disease, abnormal heartbeat patterns and bone fractures”, aka HYPERthyroid symptoms.

And those of us worldwide who know about the superiority of natural desiccated thyroid can also use these research results in our fight to be on enough desiccated thyroid with TSH-obsessed doctors, who view research as the end-all to the truth rather than solid clinical presentation, sadly. Because when we are on enough desiccated thyroid to feel fabulous again with all symptoms removed (in the presence of good cortisol levels, adequate ferritin, B12 and digestive issues), our TSH lab result is always low, aka suppressed, and without one iota of hyper symptoms.

Patients have experientially known this truth about the lousy TSH lab test, without research, for years!

But here’s what’s missing from their research:

1. Those “safe, low levels of an “ink spot on a piece of paper” do not mean the 16,426 patients they followed will be without numerous issues related to being on a storage hormone.  i.e. the body is not meant to live for conversion alone! A healthy thyroid will convert T4 to the active T3, but it will also provide direct T3 in addition to the T2, T1 and calcitonin…none of which a T4-only med provides directly.
2. Additionally, the TSH lab test only reveals the action of a pituitary messenger hormone called the Thyroid Stimulating Hormone (TSH).  The lab test does NOT measure whether your tissue is receiving enough thyroid hormone, which is why so many patients on T4 end up with depression, rising cholesterol, high blood pressure, low B12, low ferritin and many symptoms, as well as adrenal fatigue thanks to the inadequate treatment of T4.
3. Raising T4 often encourages an excess production of Reverse T3 over time, which will block cell receptors and increase the very symptoms the researcher state is avoided, as well as far more hypothyroid symptoms.

But on the positive side: this is just one more research study that ends up being on our side in our quest in teaching our doctors about far better treatment protocols. I have also included mention of this study on the following page on STTM, where I keep a ongoing list of  research which supports what patients already know by their experience and clinical presentation:  http://www.stopthethyroidmadness.com/medical-research/

This is the same article referred to by Endocrinologist Dr. Gary Pepper on the last Thyroid Patient Community Call on Talkshoe.

Basically, the article states that a genetic variation in the enzyme that converts T4 to T3, deiodinase D2 (also called Type 2 Deiodinase, or 5′-Deiodinase), may be responsible for why so many thyroid patients don’t do well on Synthroid, Levoxyl, levothyroxine, etc, and in turn, do so much better on natural desiccated thyroid like Naturethroid, Erfa’s Thyroid, or the combined synthetic T4 and synthetic T3 (Cytomel).

In other words, where some may have a strongly functioning deiodinase D2 enzyme which converts T4 to the active T3 well, others may have a modified deiodinase D2 enzyme, causing less optimal conversion.

In the Editorial, the two Endos Kim and Bianco explain the reality of “polymorphism”–a condition in nature in which changes or variations occur, and in one patient from another, a change in the DNA.  As related to conversion of T4 to T3,  some thyroid patients have a less effective deiodinase D2 enzyme in the conversion of T4 to T3.  Specifically, there is a common variant of the gene, threonine (Thr) 92 alanine (Ala), and it results in decreased D2 enzymatic activity.

The study proposes that this alteration from polymorphism occurs in 16% of those studied, and concludes that the majority don’t have this problem, and thus, “most do fine on T4-only medications”. But 16% do have this problem and need the combined therapy of T4 with T3.

Bristol was also mentioning this reality in 2004 here, even if they thought it was as low as 5%.

As Dr. Pepper hinted, this study could do wonders to open the eyes of Endocrinologists about the use of desiccated thyroid, or at the very least, about combined hypothyroid treatment with synthetic T3 added to synthetic T4.  And I’m glad for that when so many patients have found Endocrinologists to be narrow-mindedly stuck on Synthroid or other T4-only thyroxine products.

Of course, informed thyroid patients know this is only a baby step in the right direction, even if a good one! So we’ll rejoice for this study, and watch for more progress from the medical community and Endocrinology in general. For example, saying that “most do fine on T4″ simply because they have may a non-variation might be proven wrong as physicians take the time to really look at those “fine” patients, especially as they age and symptoms of an inferior treatment do pop up. And though the combination of synthetic T3 with synthetic T4 definitely gives better results, thyroid patients who then moved to desiccated thyroid with it’s T4, T3, T2, T1 and calcitonin report even better results and clinical presentation!  We’ve also learned that the TSH lab test absolutely sucks when it comes to diagnosis and treatment.  Read TSH Why It’s Useless, or see even more detail in Chapter Four of the STTM book, titled Thyroid Stimulating Hooey.

And finally: do thyroid patients really believe that problems with T4-only treatment is simply due to a genetic abnormality or variation? Maybe. But isn’t it funny that a healthy human thyroid does NOT depend solely on conversion, but also gives direct T3. hmmmmmm

P.S.  Patients also know that the use of the supplement Selenium helps with conversion, by the way, but has never stopped our first-hand knowledge that desiccated thyroid rocks!

With the recent March outbreak of swine flu in a few humans, I want to speak of facts.  This would involve all of you who use  desiccated porcine products, including Armour, Naturethroid, Westhroid, Thyroid-S, etc.

Recent cases: As of April 26th in the US, there are only 21 human cases of “swine flu” this year reported by the CDC (Centers for Disease Control and Prevention):  California 7 cases;  Kansas 2 cases;   New York City 9 cases;  Ohio 1 case;  and Texas 2 cases. There have also been outbreaks in Mexico which may be related.  No one has died and none of the cases have been severe.  The current outbreak is a combination of swine, bird, and human influenza viruses.

What is the Swine flu? Swine flu is a type A influenza and has been in existence with pigs for a long time.  Many pigs will get sick when it does go around; very few will die.

Why are humans getting it? The real irony is that humans can be ones who give it to pigs in the first place!  But in turn, new human infection from infected pigs is actually quite rare. In most all cases, a healthy human will get it from contact with a live pig, such as at a livestock show. Then, the infected human will spread it to other humans.  So, when you see that “21″ people have gotten it,  some may have gotten it from “one” person–i.e. a human-to-human contact.

The CDC also states that in a particular study, 76% of swine exhibitors tested had antibody evidence of swine flu infection but no serious illnesses were detected among this group. In other words, the majority of those exposed don’t even get the illness. If they do, it’s mild for most and only serious for a very small minority.

How common is swine flu among pigs? Swine flu is common in groups of pigs all across the world, especially during the winter months.  Anywhere from 25-50% show evidence of having been infected.  But many pigs are vaccinated against it.

Can I get it from the use of Armour or other desiccated thyroid products? The standards in the making of desiccated thyroid powder as set by the U.S. Pharmacopoeia is extremely rigorous.  So, it is important to understand that your chances of getting swine flu from taking a US Pharmacopoeia-approved product is remarkably low, low, low. You have a much greater chance of injury from riding in your car.

So, for me, with all the above facts, I’m going to take my Armour with ease and peace, because using desiccated thyroid to treat my hypothyroid is FAR FAR better than any other treatment. Perhaps you will decide to do the same.  If you stay worried about it, you might also want to avoid using your car, stop using stairs, and avoid most people at all costs.   P.S. Check out the comments to this post. Will also help put you at ease.

* Here’s John Lowe’s rebuttal to the scare of swine flu: http://www.thyroidscience.com/index.htm It confirms everything I’ve said plus a whole lot more. i.e. take your desiccated thyroid!

* Want to know what’s on my mind? Interested in the latest information on desiccated thyroid? Just use the Notifications on the left at the bottom of the links.

*If you find the website to be too enormous for your brain fog, or want better ease of getting the facts, the patient-to-patient STTM book is proving to be a good choice, say many who write me.  Just make sure you have a yellow highlighter. haha

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.

p.s. Also see Sheila’s experience on the Feb. 20th post. Awful

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Today, I came across a short summary on recent study findings presented at the 79th Annual Meeting of the American Thyroid Association in November, 2008.

It states that in a study with thyroid patients 65 and older, there was no improvement in cognitive function when a patient is optimally treated on thyroxine, aka Synthroid, Levoxyl, Levothyroxine, Eltroxin, et al.

Gee golly.  What breaking and cutting-edge news!

NOT.

Too bad it takes the results of a research study to reveal what has been blatantly obvious in patients of all ages for 50 years: thyroxine overall does not work and leaves patients with a variety of NON-improvements, as well as worsening symptoms of lingering hypothyroidism as they age.  Duhhhh.