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Ten years reveal what works with thyroid treatment, plus healing adrenals without HC!

This year, 2012, marks the tenth year I started working with and learning from patients after desiccated thyroid turned my life completely around. It all began with the creation of the Yahoo group Natural Thyroid Hormone users–a still-active group. And the next few years of “patients sharing with patients” provided incredible information. 

And when it comes to the variety of thyroid med treatments, here’s a general summary of ten years of patient experience:

  1. T4-ONLY MEDS: do not work well for a large body, if at all, leaving patients with continuing hypothyroid symptoms in their own degree and kind. Those who feel they are doing well on T4 end up seeing increasing symptoms of a poor treatment…eventually (or don’t recognize their symptoms of a poor treatment). By observation, more than 50% of those on T4-only end up with screwy or debilitating adrenal function, low iron, low Vit. D and more side effects of a poor treatment. Some put on T4 (because of a transient high TSH lab test result) probably never needed any thyroid treatment in the first place, like my sister-in-law.
  2. SYNTHETIC T3 WITH SYNTHETIC T4: a definite step up from T4-only in improvement of symptoms. Unfortunately, though, we see more and more doctors prescribing this rather than breaking through their ignorance and prescribing natural desiccated thyroid with its T4/T3/T2/T1/calcitonin, because all they know about is synthetics.
  3. T3-ONLY: another good step up from T4-only. Patients note they have to be diligent in taking their multi-dosed T3, having no T4 to rely upon for conversion. Also used temporarily by those who want to lower high RT3 while correcting the causes.
  4. NATURAL DESICCATED THYROID: gives the best results, say many patients over the past ten years who tried the synthetic T4/T3 route or others, since it gives exactly what a healthy thyroid would give (T4, T3, T2, T1 and calcitonin).  There just appears to be something synergistically powerful when you give yourself exactly what your own thyroid would be giving you.  If you have issues, it’s usually due to a cortisol or iron problem, which need to be corrected. More info here.
  5. COMPOUNDED THYROID:  Be careful, say experienced patients, when your doctor prescribes this! It’s far more expensive, and the less expensive prescription pill forms of NDT work well anyway. Also, some patients have been shocked to find out that what they were taking was compounded synthetic T3 and synthetic T4. Beware, say informed patients, when your doc says “it’s specially formulated for your particular needs” (for most, this is a mute point. The prescription pills for fine.) or “time-released is good” (Not, say patients, who found it runs out far too quickly).
  6. OVER-THE-COUNTER THYROID SUPPLEMENTS:  Just a few years ago, patient experience found them to be weak substitutes for prescription desiccated thyroid meds. But the last few years saw the introduction of good OTC products which patients report have done them well! ThyroGold brought out by the late Dr. John C. Lowe is one, even if quite strong and the need to pour out the contents and divide.
Of course, there can be less common ways to use the above. For example, those with peripheral tissue resistance can be on high doses of desiccated thyroid (to get the benefits of all five hormones) along with added T3. And there are more.
READ the stories of two real people who found out the hard way that Synthroid can end up biting you in the butt later: DEANNE and GENE.

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YES VIRGINIA, YOU CAN HEAL YOUR ADRENALS WITHOUT USING HC!

And just as patient experience has revealed great information about a variety of thyroid treatments, the same patient experience is breaking ground with adrenal treatment as I write this! Namely, a small but growing body of patients have been doing the T3 CIRCADIAN PROTOCOL FOR ADRENALS, as first discovered by UK patient and author Paul Robinson, and it’s working!

And even more exciting? It’s working with natural desiccated thyroid, not just T3!

Now of course, Paul doesn’t feel that “healing” is the right word. He prefers that it’s “promoting better adrenal function”.  He’s right. But “healing” fits when one has gone from the misery of low cortisol, to the glee of better adrenal function….and achieved from just several weeks of doing the protocol correctly, as compared to a few years with the use of HC and its problematic side effects.

To read more about this exciting new discovery, go here.  You’ll also see the link to order Robinson’s book, of which Chapter 16 covers this use of T3 in promoting better adrenal function.

 

9 replies

Dr. Mark Starr has made a comment strongly favoring desiccated thyroid

Dr. Mark StarrI have been driving all day, bringing my husband back home after serious hand surgery yesterday. And while I was away from the computer, I received the below via the Contact Me form of STTM, written by Mary Budinger for the Arizona Net News journal, September 16, 2009:

Dr. Mark Starr’s office team wanted to send over a portion of an article just written for an Arizona health magazine:

Desiccated thyroid from pigs is a bio-identical, complete hormone preparation, containing the entire spectrum of thyroid hormones including T4, T3, T2, and T1 that are in the human thyroid gland.

Current FDA approved thyroid medications include Synthroid, Unithroid, Levoxyl, and Levothyroxine (all only contain T4), and Cytomel (only T3). These hormones are synthetic and contain only a portion of the thyroid’s hormones.

Dr. Mark Starr of Phoenix, Arizona, said patients have called him, frantic that desiccated thyroid is unavailable. “It is so key to my practice, I have enough for my patients. So far, it appears that when supply catches up with demand in a few months, the shortage will be over.”

Dr. Starr is the author of “Hypothyroidism-Type 2.” He said synthetic thyroid acts energetically differently in the body. “All living things have a right spin, and synthetic medications have a left spin. The desiccated thyroid is better tolerated.”

Dr. Broda Barnes did a study that revealed a relative intolerance to a synthetic thyroid product containing T3 and T4 (Thyrolar). One-fifth of the patients who had done well on desiccated thyroid developed rapid heart beats and palpitations when switched to Thyrolar. Dr. Barnes also did a major research study on desiccated thyroid that involved thousands of patients over 30 years; it showed a 94 percent reduction in the number of expected heart attacks. This study is the subject of the 1976 book “Solved: The Riddle of Heart Attacks.”

Lipitor is the best selling drug in the world. But for the first half of the 20th century, desiccated thyroid was the standard treatment for high cholesterol. Elevated cholesterol and triglycerides are one of the myriad symptoms of hypothyroidism. Dr. Barnes’ book included a chapter entitled “The Demise of the Cholesterol Theory.” Desiccated thyroid normalized cholesterol and triglycerides in 95% of the patients Dr. Barnes treated. The 5% who had persistently elevated levels had no increased incidence of heart attacks. Desiccated thyroid therapy also resolved a long list of other hypothyroid symptoms such as fatigue, cold intolerance, joint and muscle pain, dry skin, inability to lose weight, headaches, and menstrual problems. One of the most important benefits that Dr. Barnes demonstrated in studies on both animals and his patients was that desiccated thyroid increases immunity and allows the body to fight off infections. As we come into swine flu season, this is particularly important.”

Dr. Starr, I love the way you put it: “All living things have a right spin, and synthetic medications have a left spin. The desiccated thyroid is better tolerated.” And that’s exactly why the website Stop the Thyroid Madness exists–patients all over the world have found out what a far better “right spin” treatment desiccated thyroid has been for them!  So we present this information, hoping that more and more patients can learn from the paths walked before them, and take this right into their doctors offices.

And about Thyrolar, which is a combination of synthetic T4 and synthetic T3:  we’re glad it exists. But…there have been numerous patients over the years who tried the combination of synthetic t3/ synthetic T4, and who then switched to desiccated thyroid. And they identically report on the NTH thyroid group that they got far better results from desiccated thyroid. That is powerful information.

And yes, Dr. Starr, we are looking forward for supply to catch up, because natural desiccated thyroid is a godsend.

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Join the Thy­roid Patient Com­mu­nity Call on Talk Shoe this Friday. UPDATE: the President of Hook’s Apothecary, a compounding pharmacy that serves Illinois and Indiana, will be in the chat to talk about compounding desiccated thyroid.

Also check out the post below concerning possible hints that we are closer to seeing more desiccated thyroid on our shelves?

30 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

Getting the facts straight about Dr. Sydney Wolfe, and what YOU can do.

armourbottleWith 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.


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Addressing folks who do well on T4 aka Synthyroid, Levoxyl, etc.

I received a reply to a post below that I was unable to approve because it mentioned someone by name. And the reply was not particularly friendly, and definitely not accurate. lol. But the reply brought up some good issues, which I have no problem addressing.

Namely, can I agree that there are some people who do well on T4-only treatment such as Synthroid or Levoxyl?? I can…sorta. I have a friend whose husband is one of those seemingly lucky individuals on T4, with no thyroid, who leads a fairly active and happy life. Considering how lousy I did, he amazes me. But I did notice something else about him: he has high and rising cholesterol and is on statins. That’s a classic symptom of a poor treatment and continuing hypothyroid, even if he does have much better energy that I ever did.

And by observing him, and knowing a few others who subjectively feel they do well on T4, I came to the following conclusion: though some may do better than others on T4, I have yet to find anyone on T4 who doesn’t have some kind of side-effect of a poor treatment, whether they are treating it with statins, treating it with antidepressants, or not treating it at all & denying it. Sure, some may do better than others, but the proof is in the pudding if you look deep enough. And, at the very least, I’m just plain suspicious that ANYONE on T4, even doing subjectively well, is going to have symptoms of a poor treatment creep up on them as they age. The body was not designed to live on conversion alone.

Can I agree that some people just canNOT tolerate desiccated thyroid like Armour and need to be on T4? Initially, that may be. The gal that wrote me stated she felt a lot better on T4, and that no matter what she did, she couldn’t tolerate Armour. I believe her. If Armour was that miserable, she should be on T4 for the time being, or even better, a synthetic T4/T3 combination. But I also believe that even if she feels she did everything to a “t” and still couldn’t tolerate it, there was more for her to learn that she didn’t get the first time around when it came to her adrenal fatigue treatment. I see it too many times. And perhaps, over time, it will become more clear.

Do some proponents of desiccated thyroid go overboard in their fervor? I don’t doubt it one bit. We’re human. And we hope you are forgiving. But once you get past however you view are communication shortcoming, do know that our fervor is based on the fact that a huge volume of individuals are having lives changed due to desiccated thyroid (and/or treatment of low ferritin, and/or treatment of adrenal fatigue). And it’s too widespread and global not to have fervor, besides common sense that a treatment that gives us back what our own thyroids would be giving us is just plain remarkable.

So, do know that if you are on T4, and feel well, I’m behind you. It’s your life, not mine, and I believe you. But neither can I stop my belief and too many observations that if you are truly hypothyroid and need treatment, desiccated thyroid is a superior choice, now or later, whether you are lucky enough to have escaped adrenal fatigue, or whether you have a challenging case of adrenal fatigue that can be adequately treated!

5 replies