For example, the article notes that there seems to be a “higher symptom load and the lower quality-of-life scores in the group of patients with increased anti-TPO levels”, which can include “Chronic fatigue, dry hair, dysphagia, irritability and nervousness”. Yet, the article states, these patients have “normal thyroid function” , are “euthyroid” and have an “ideal biochemical response to thyroid hormone replacement therapy.”. Are you kidding me, say many thyroid patients???  Chronic fatigue, dry hair, dysphagia, irritability and nervousness are classic hypothyroid symptoms, as well as potential adrenal issues from having poorly treated hypothyroidism!

And of course, most thyroid patients who are informed know that “normal” and “ideal” refer to an ink spot on a piece of paper called the TSH lab result and NOT cellular receipt and/or use of thyroid hormones.  The TSH lab test has failed patients for decades, just as has T4-only!

Also mentioned is the Austrian study involving 426 women aged 19 years or older who were undergoing surgery for benign thyroid disease. When SO many patients come on thyroid groups and report Endo’s who want to remove their thyroids simply because they have the treatable Hashimotos disease, you have to wonder why 426 women were having surgery for “benign thyroid disease”… To read all the ways patients have learned to adequately treat Hashimotos, go here. To find a good doctor, go here.

Do you look back and wonder about the fact that your thyroid was taken out?  Let us hear your story by commenting on this post. What has been your experience with an Endocrinologist? Tell us about it.

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“Have you registered?  The Charity, Thyroid Patient Advocacy www.tpa-uk.org.uk, is creating a World Register of Counterexamples to levothyroxine-only (T4) therapy. This short survey is applicable only to those who continued to suffer symptoms on T4-only therapy, and who found those symptoms were mitigated or disappeared once they were started on a T3 hormone containing product , whether synthetic or natural thyroid extract. The objective is to push for a re-examination of the existing protocol for the diagnosis and management of the symptoms of hypothyroidism. If you fit this category, please complete the 3 questions with either ‘YES’, ‘NO’ or N/A here http://www.tpa-uk.org.uk/register_of_counterexamples.php All responses will be collated online, and your email address (if you provide one) will be used ONLY to contact you at a later date should this be becomes necessary. (A counterexample is a situation which fits the concept or premise of an idea but produces a different result.  To be responsible, a scientist who finds a counterexample to his idea, must limit or abandon his idea as unworkable, or not reliable.)

A GOOD REPORT ON THIS OVER-THE-COUNTER THYROID SUPPORT

A gal recently used the Contact Me form on STTM to ask if I’d ever compiled patient experiences on ThyroGold–a nonprescription, over the counter, desiccated thyroid formulated by Dr. John C. Lowe and made from the thyroids of New Zealand cows who are pasture-fed. I said no–haven’t heard yet from anyone on it long enough.

But just thirty minutes later, here comes an email from a gal who has been on it four months, feels very good with many noted improvements. She is so thankful, and stated STTM gave her the confidence to feel she could work with ThyroGold. And lo and behold, her TSH-worshipping, Synthroid-prescribing doctor is watching her progress, and pleased.

COCONUT OIL AND ALZHEIMERS

Many a thyroid patient have heard of the benefits of coconut oil, especially as a food product which can stimulate your metabolism.

But a Dr. Mary Newport discovered in 2008 that just 4 teaspoons a day of virgin coconut oil just might have the right ingredients–medium-chain triglycerides which produces ketones by the live–to stop the onset or even reverse some of the damage caused by Alzheimer’s.  She witnessed this in her own husband. You should read her story here, and more on the Coconut Ketones website here.  Since my mother, and her father, both got Alzheimers by the time they were eighty, this especially interests me!

In fact, coconut oil just night have the same successful results with Parkinson’s disease, Huntington’s disease, multiple sclerosis and amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease), drug-resistant epilepsy, brittle type I diabetes, and type II (insulin-resistant) diabetes. WHOA!!

Says Dr. Newport:

Our cells can use ketone bodies as an alternative fuel when glucose is not available. Brain cells, specifically neurons, are very limited, more limited than other cells, in what kinds of fuel they can use to function and to stay alive. Normally, they require glucose (sugar), but they can also use ketone bodies. Humans do not normally have ketone bodies circulating and available to the brain unless they have been starving for a couple of days or longer, or are consuming a ketogenic (very low carbohydrate) diet, such as Atkins. In Alzheimer’s disease, the neurons in certain areas of the brain are unable to take in glucose due to insulin resistance and slowly die off, a process that appears to happen one or more decades before the symptoms become apparent. If these cells had access to ketone bodies, they could potentially stay alive and continue to function.

P.S. Did you see the “one or more decades before symptoms become apparent”? That means we need to be on coconut oil daily NOW,

ARE ENDOCRINOLOGISTS FROM ANOTHER PLANET?

A patient on STTM’s Facebook page recently reported that since her HMO would only allow her to see an Endocrinologist, off she went to the appointment.

And what does her new Endo tell her? Ready? That her TSH was fine, low T3 & T4 meant nothing, and there is NO evidence that Adrenal Fatigue is real (in spite of the fact that when she tries to raise her Armour, her heart goes wacky–a sure sign of low cortisol). She concluded that there is “nothing like being lectured on things when you know more than they do.” She felt forced to keep her mouth shut by his reactions if she did try to teach him something, and just resigned to “agreeing with everything he said and left”.

And her summary of that Endo escapade? “My dose of Armour is right, makes no difference I’m fatigued, had to quit my job, leg swelling so bad I can hardly get around. None of that mattered. ONLY the TSH test.”

And unfortunately, her comment about knowing more than the doctor is very, very common now thanks to STTM and patient groups. All we can hope for are those doctors who are humble and open-minded to what we now KNOW to be true!

TWO OF THE MOST IMPORTANT CHAPTERS IN THE STTM BOOK

Chapters 3 and 11

REMEMBER ME MENTIONING THE GAL WHO PUT THE STTM BUMPER STICKER ON HER HUSBAND’S CAR?

Well, he got followed into the Barber Shop this time by a male nurse! So now, he wants something to hand out to these folks who keep approaching him. haha. So she has made copies of the STTM FLYERS and he’ll have them in the car from now on. This is reaching people…one by one!

Answer: Most are duds.

On Monday, I had an enjoyable experience with an exception to the lemon cliche:  I was a guest on Dr. Steven F. Hotze’s radio program Health and Wellness Solutions, broadcast live from Houston, Texas.  You can listen to a recording of our conversation here on the lower right under the heading Dr. Hotze Radio in orange.

The commercials were like flies, zeroing in often and irritatingly. But we managed to briefly mention both Stop the Thyroid Madness as well as the Hotze Health & Wellness Center.

And two things struck me about our friendly chat: first, Hotze mentioned that he started prescribing natural desiccated thyroid in the 1990′s, far ahead of most doctors even today!  If only we knew.  And second, he made a quick mention of how disappointing most doctors are for patients, referring to the STTM page called Give Me A Break. If you haven’t seen it, or it’s been awhile, you will find it both hilarious and completely sad.

And it all made me ponder how in 2010, eight years after I personally found the life changing desiccated thyroid,  there are still so many family practitioners and Endocrinologists keeping thyroid patients sick all over the world, even if they mean well, even if they are good people, even if they do other diagnoses and treatments correctly.

So on one hand, it’s reality that progress is slow. But on the other hand, the thyroid treatment wall of ignorance is slowly tumbling down about better thyroid treatment thanks to patients who read about it and carry that information into their doctors offices.

So perhaps over time, the lemons who practice bad thyroid treatment will become less and less prominent in the name of enlightenment, wisdom and LISTENING to patients.

P.S. And by way, if you are lucky enough to have found one of those docs who prescribe desiccated thyroid, remember that NO doctor is all-knowing. YOU live in your own body, and can have your OWN wisdom and knowledge. So expect the relationship be a partnership. And if you can’t get that partnership, find a better doctor.

Want to read more about natural desiccated thyroid? Go here.   To read my own story, go here.

So I am glad to announce that Steven F. Hotze, M.D. and I will be doing a good program that does NOT need a totally misinformed Endocrinologist for the sake of “balance”!

I will be a guest on “Health & Wellness Solutions” radio program of Dr. Hotze on April 12th (NEXT MONDAY) to talk about hypothyroidism. The radio show airs Mon-Fri from 12-1pm CST on 700 AM KSEV-Houston, Texas and on the internet through www.DrHotze.com. Our part will start at 10:15 am Pacific, 11:15 am Mountain, 12:15 pm Central, and 1:15 pm Eastern.

You can also read his Press Release about this upcoming show.  Dr. Hotze runs the Hotze Health & Wellness Center in Houston, Texas–a practice which believes the primary criterion for diagnosis, and for evaluating the effects of treatment, is how a patient feels. 

So mark your calenders, set your cell phone alarms.  IF CANADA BROADCASTING CAN’T GET IT RIGHT, JANIE BOWTHORPE WILL!!!

http://www.stopthethyroidmadness.com/2010/01/28/endocrinologists-tsh-lab-test/

Well, it’s time to hear what Dr. Holtorf has to say!

Join us as I chat with him about this incident next WEDNESDAY, FEB. 17th at 6 pm Pacific, 7 pm Mountain, 8 pm Central, and 9 pm Eastern, right on your computer’s audio on STTM’s Talkshoe Call webpage (below). Call in to ask questions, too. MARK YOUR CALENDER! SET YOUR CELL PHONE ALARM! This is one introduction that I’m going to have fun with, don’t ya think??

http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc

***Note that we moved it to Wednesday nights. That should help with any dropped calls that were happening on busy Thursdays.

By the way,  Dr. Holtorf recently launched his new website, called The Non-Profit National Academy of Hypothyroidism in an attempt to reach doctors about appropriate diagnosis and treatment of hypothyroidism, which patients know does NOT include just the lousy TSH lab test.  Will doctors, and especially Endocrinologists, ever figure out this clear and easy truth?  Don’t we hope so.

Have something to say? Use the Comment function at the bottom of this blog post. If you are reading this via an email notification, just click on the title of this blog post to take you directly to the actual blog post.

You may have seen the segment on NBC’s Today Show this morning, January 29th, 2010, or you may have heard about it on the internet. But in case you didn’t, the Today Show had a rare short piece about hypothyroidism and diagnosis which presented a Nurse Practitioner, Eola Force, with clear symptoms of hypo, including extreme tiredness, feeling like she’s dying, huge weight gain, depression, and brain fog, to name a few.

Yet, she had a so-called “normal  “TSH” lab test. The explanation for her symptoms?? She’s FAT, HORMONAL and FEMALE, of course!

And because she is under the care of a wise and knowledgeable doctor named Dr. Kent Holtorf and his clinic, which uses additional tests besides the TSH, he diagnosed her clearly, put her on thyroid hormones, and changed her life.

And the response by Dr. Singer, an Endocrinologist? There is “no real scientific basis” for what Holtorf does in his practice, and it was equivalent to the “laying on of hands”.

Well my dear Dr. Singer sir, if hundreds of millions of patients all over the world waited on “science” to prove what they know by decades of miserable experience because of the TSH, we’d all still be sick as dogs. The mutually accepted delusion by the Endocrinology field about the TSH lab test has left millions of thyroid patients undiagnosed and undertreated for nearly 40 years of its existence.

Other than to potentially diagnose a pituitary problem, no, the TSH lab test is NOT the gold standard for thyroid screening anymore than reading tea leaves tells me what kind of day I’m going to have.

Read more about the TSH lab test here, or find even more detail in Chapter 3 in the book called TSH: THYROID STIMULATING HOOEY.

See much better labwork than simply the TSH here.  Find what your results mean here. And here‘s how to find a much better doctor.

P.S. Thyroid patient Lynn Dunning emailed me about talking about the craziness of current thyroid treatment at her work, and one of her colleagues put this up on the work website:
http://www.spunout.ie/health/Healthy-body/Thyroid-madness Good for Lynn and the SpunOut website!

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!

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!

I once cracked open an egg to find it had TWO shells.  And that oddity is equivalent to finding an Endocrinologist who supports the use of natural desiccated thyroid. 

Voila!! ~~ you can listen and talk to an Endo who does just that on this Thursday evening’s popular THYROID PATIENT COMMUNITY CALL on TalkShoe.

His name is Dr. Gary Pepper, Board Certified by the American Boards of Internal Medicine, and Endocrinology and Metabolism and editor-in-chief of metabolism.com.  Besides serving many years in distinguished leadership positions, he was selected as one of the top 100 physicians in New York City by New York Magazine and is also a featured expert with CNBC and ivillage on topics of diabetes and endocrinology. He states:  Almost daily I reread the words of Sir William Osler: “It’s often more important to know what sort of person this disease has than to know what disease the person has.”

i.e. this is one of a rare but growing breed of doctors who supports what we as thyroid patients already know–that desiccated thyroid is a five-star hypothyroid treatment and T4-only is about as effective as a doughnut diet for most. And lo and behold,  Dr. Pepper is an Endocrinologist! Of course, I can give no guarantees how he is as a doctor in his own office, but I do appreciate his understanding that T4-only treatment may not be the best way to treat hypo.

Join us this Thursday evening, 6 pm Pacific, 7 pm Mountain, 8 pm Central and 9 pm Eastern by clicking on the first link above titled Thyroid Patient Community Call.  When on that page, you’ll also see the exact day and time left before the call. You’ll be able to listen to the call right on your computer, or you can dial in and listen on your phone. There is also an option to talk one-on-one live with Dr. Pepper and Janie.

And remember: neither I or Dr. Pepper can offer personal medical advice or provide individual specific counseling. Those are between you and your personal physician.

***P.S.  PharmaTimes this month reported that this quarter’s sales of  Synthroid (levothyroxine) were up 3.7% to $134 million by Abbott Labs. Sad for most of those patients. If you know of someone who has been put on a T4 med, send them here: www.stopthethyroidmadness.com/t4-only-meds-dont-work or to the audio page here: www.stopthethyroidmadness.com/audio-shorts (third one down).

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.