thyroid patients tags

As mentioned in my previous blog post of November 10th, I frequently get emails from doctors all over the world who appreciate the message of patient experience as expressed on Stop the Thyroid Madness, both the revised book and website.  Here is just one more that absolutely blew my mind, as this MD, unlike his ostrich colleagues, keeps his head out of the sand and tells it LIKE IT IS.  Again, I will not be mentioning his name.  The below is exactly as he wrote it to me. Get ready to be both awed and disgusted!

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In the year 1847, a young Hungarian physician named Ignaz Philipp Semmelweis had a practice of Obstetrics which began to grow by leaps and bounds.  Even the Royalty of Hungary began to go to his practice. Why?  Because he had the best outcomes.

When he tried to show his collegues his techniques, they simply made fun of him. As his practice continued to flourish,  his peers brought him before the medical society and censured him for not adhering to the current practice guidelines. 

His crime? Washing his hands before delivering babies.  Physicians were offended to think they should wash their hands, and were especially incensed when he could offer no scientific explanation for his intuitive action.  Yet, this very simple antiseptic procedure meant that his OB patients did not contact puerpeal fever and die. Puerperal fever was common in mid-1800′s and often fatal.

The censureship did him in with depression and his practice ended when he was only 47 years old….not because he couldn’t practice,  but because he literally grieved himself to death watching so many women dying unnecessarily for the sake of  current practice guidelines.

It was not until the 1890′s that his methods were fully recognized,  even though Oliver Wendell Holmes of Boston, Mass. USA had confirmed the contagiousness of peurperal fever, and Louis Pasteur confirmed the theory about germs.

And today, established scientific and medical opinions continue the same ridiculous travesty. 

TSH levels have been set at 0.3-5.1 as normal. Therefore, if your physician screens for thyroid disease and you fall within that range, you are considered normal.  Yet, Gay, JC et. al.,  in the Arch Intern Med 2000: 160: 526-534,  showed that the TSH range was 0.45-2.5 for 95% of general population.

In the J Clin Endrocrino Metab Feb 2002 87:(2)489-499 “Serum TSH,T4, and Thyroid Antibodies”,  Hollowee JG et.al. found that a normal TSH was 0.05-3.0 and was different for Whites, Hispanics, and Blacks.The NHASANES lll study showed the normal TSH to be 0.3-2.5 (95% of normal reference subjects).

As a doctor, I wrote to my pathologist at the lab I use and asked why his lab had not changed the ‘normal’ values. I will give you his reply:

“I am aware of this idea to lower the reference range for TSH.  But there are mixed feelings about this in the medical community, especially with endocrinologists. If, for example,we lowered our reference range for TSH from its current 5.1 to 3.0,  we would go reporting about 7% of TSH results being too high to 30%. The last time I looked into this, which was about two years ago (note: this was written in June 24, 2005,  which puts the date of last looking in 2003), most endocrinologists that I spoke with were concerned that suddenly having many more patients would be considered “abnormal” and it would be difficult to manage. They felt it would be best to wait until the word spread in the general medical commmunity and literature so that most physicians would be prepared for the inevitable questions from patients and know how to deal with patients suddenly having high TSH’s. On an individual basis, we certainly could give a lower reference range for the TSH, but you should know that this is not the standard practice in the commnity at this time. It may become standard, but right now, it is not.

Thanks, and good luck,
xxx

So there is the problem. Even if TSH alone was used for screening,  the answer will be wrong. Many hypothyroid patients misdiagnosed as ‘normal’  are being done so because if the right change were made, the ‘medical establishment’ would be embarassed. This says to me that the ‘medical establishment’ does not care about the patient as much as they do themselves.

Recap: TSH levels were known to be wrong by 2000. Reconfirmed in 2006. Waited at least 5 years to make change and no change made. Something is wrong with the system. Review Ignaz Philipp Semmelweis story. Nothing has changed in approx. 160 years.

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From Janie:  ABSOLUTELY BRILLIANT!  And of course, informed thyroid patients also know another inane current practice guideline–the use of  Synthroid and other T4-only meds as the “gold standard” of thyroid treatment…in spite of the fact that a huge body of thyroid patients in internet groups ALL OVER THE WORLD report POOR outcomes when on T4-only meds, besides with the TSH, and do much better on natural desiccated thyroid, or even T3, and dosing by symptoms and the free T3.

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FIND THE ABOVE APPALLING??? FIGHT BACK!!!  A publicist has been hired to represent  Stop the Thyroid Madness in getting to the word out to millions who still linger on T4-only meds, or who are considered “normal” thanks to the lousy TSH lab test. But it can’t go on long without your help!! Read about it here.

NOTE: after posting the below yesterday, November 6th, WordPress changed the date to October 6th, and it showed up BELOW my Halloween post.  So, I’m removing what I posted yesterday, reposting for today, Nov. 7th, and I’ll add the two relevant comments that were already given to this post, below.    Janie)

(Photo graphic by thyroid patient Sam Aliyev of Azerbaijan, Baku city.)

• TAKING YOUR TEMPERATURE CORRECTLY?? Possibly not. 

Thanks to Dr. Broda Barnes, informed thyroid patients know the importance of taking one’s temperature, especially just before we get out of bed in the morning. According to Barnes, we can suspect a thyroid problem if that temp is below 97.8. Conversely, healthy thyroid function (or adequate treatment) would  put our before-rising temp from 97.8 to 98.2. (Menstruating females would need to be aware of higher temps right after ovulation.).

Today, we favor the mercury thermometer over digitals for accuracy. But are we using the mercury thermometer correctly? Maybe not.

A discussion between thyroid patients recently underscored the need to leave it in the mouth longer than the 5 minutes we thought was adequate. Thyroid patient Jennifer states: At 5 minutes it read 97.6, at 10 minutes it read 97.8 and at 15 minutes it read 98 degrees. After that, it stayed 98 degrees.  We then discussed the fact that manipulating the muscle in the back of throat could have caused the final temp. But her experiment, as well as others, underscored that we need to be holding that mercury thermometer in our mouths no less than five minutes, and ten is probably better.

• DOES SELENIUM REALLY CAUSE A RISE IN REVERSE T3 (RT3)?  THINK AGAIN.

The above statement about selenium causing excess RT3 has oft been repeated from group to group for a few years. But it may be very wrong.

For example, this study shows selenium did not cause a rise in RT3, and in fact, lowered  it. Here is one which shows LOW levels of selenium can result in increased RT3. This medical book states that though RT3 comes from T4, it also concludes that  low selenium increases RT3.

In other words,  though the enzymes that convert T4 to T3,  and convert T4 to RT3, are selenium dependent to do their job, that doesn’t mean that selenium is going to increase your RT3.  Bottom line, many thyroid patients love selenium, especially with its power to lower Hashimoto’s antibodies, and being anti-cancer. Suggested levels are no more than 400 mcg.

• TPA’s AUTUMN NEWSLETTER IS OUT–many good articles!

TPA stands for Thyroid Patient Advocacy, and is a UK charity organization started by Sheila Turner. Check out the articles below in thelatest newsletter.

Page 5: The Big Question – Is There an Anti-T3 Conspiracy.  Eric Prichard critically questions why those in Endocrinology need to cite numerous anti-T3 studies, in spite of many other studies which reveal the activeness and superiority of T3. Is the UK and other dark age countries ever going to get it?

Page 9:  Why I Believe T3 Should Be the Very Last Treatment that Thyroid Patients Consider.  Don’t let UK’s Paul Robinson’s title fool you. He believes in the efficacy of T3, but underscores why it can be complex to dose with just T3.  Especially compelling are what follows Paul’s article, titled MEMBERS SUCCESS STORY.  Story 1 is about an individual who, when dosing T3 in the early morning hours, was able to get off all adrenal meds. Story 2 is about a gal’s successful transition from T4 to T3.

Page 15:  Thyroid Patients Have Come a Long Way, Baby….But We Still Have a Way to Go!  Though there are now numerous patient groups on the net and many lives have changed, Janie Bowthorpe (yes, me) explains how many doctors still have a long way to go in understanding how T4 and TSH fail patients, just as desiccated thyroid or T3 have turned miserable lives around.

• HEALTHCHECKUSA WENT UP ON SALIVA TESTING….BUT HERE’S HOW YOU CAN GET THE ORIGINAL PRICE!!

On the Recommended Labwork page, you’ll see several lab facilities where patients can get their own labwork done. HealthcheckUSA is a favorite for many. Unfortunately, their “Adrenal Hormones Saliva Testing Kit from ZRT labs (Dirunal Cortisol and DHEA-S)” went up, from $170.00 to $ $265.00. But there is GOOD NEWS:  STTM’ers can keep the price of $170.00 by placing a PHONE ORDER for the saliva at 1-800-929-2044. The customer will need to mention STTM!!   MENTION STTM to get the discount.

• READING THIS BLOG POST VIA AN EMAIL NOTIFICATION??

If you want to respond to this post, click on the title at the top of the email, which will take you directly to the blog post on the STTM site. Then click on Comment.

Below this blog post, you will see my original July 25th post about the potentially harmful thyroid article that appeared in Good Housekeeping magazine’s August issue.

And sadly, though thyroid patients can appreciate even getting a reply by the Editors of Good Housekeeping (which is certainly better than the dead silence thyroid patients got from Oprah Winfrey when they emailed numerous times about this horrific thyroid treatment scandal), we certainly are saddened by the continued poor understanding and false suppositions contained in the reply:

We have read your postings and letters with great interest and are moved by the depth of feeling that underlies them. It is obvious that many of you write out of frustration with your own unresolved symptoms, and we are sympathetic to your ongoing difficulties.

Good Housekeeping’s August 2011 article on thyroid disease describes one woman’s quest to understand her own ambiguous diagnosis. As described in the article, there is a great deal of controversy surrounding the diagnosis and treatment of low thyroid disorders — among mainstream physicians as well as those with a more complementary or integrative orientation. We recognize that much of the information on the Internet serves to support patients who haven’t been heard or understood by their own doctors — a terribly disheartening and frustrating experience for anyone. But it is often difficult to discern what’s been scientifically tested and proven versus what is still being explored. That is why this article, like all health articles in GH, drew on research and advice that is evidence-based; typically, such information comes from credentialed doctors working at leading medical and academic centers. A careful reader of our story will see that doctors we consulted acknowledged that low thyroid levels might be treated if a patient has other problems like infertility or depression or if she has Hashimoto antibodies and other factors.

It is our hope that better understanding of the disease will lead to more effective treatment for all. That’s really the goal and the motivation behind all of Good Housekeeping’s health coverage.

We thank you for your valuable feedback and encourage you to continue to send us your thoughts. You can reach us at ghletters@goodhousekeeping.com.

And here is my reply to the Editors of Good Housekeeping:

We, as thyroid patients around the world, do appreciate that you took the time to reply. We have been the recipients of dead silence all too often in our quest to inspire and educate the media about this near 60-year thyroid treatment problem. Thank you.

But there are incorrect observations and assumptions in your reply that need clarification and intelligent re-thinking:

1. This patient-to-patient movement is far more than ‘frustrations with our own unresolved symptoms’.  This is about  hundreds of millions of us worldwide who have been subjected to a brainwashed bias by medical professionals in the use of  T4-only medications and the TSH lab test (both which have left us with lingering hypothyroid symptoms and denied as such by our physicians).
2. What you refer to as “a great deal of controversy surrounding the diagnosis and treatment of low thyroid disorders”  is, in our experience and observation, only within the boundaries of a dogmatically-trained medical profession comprised of those who seem to have lost the art of paying attention to CLEAR symptoms of hypothyroidism with a so-called “normal” TSH lab test or with the use of the laughable “gold standard” of thyroid treatment–T4-only.
3. This is far more than what is “scientifically tested and proven.” Do you REALLY believe that all scientific testing is unbiased and correct??  Do you not understand that much science has been done quite badly, and the results are often in conjunction to whoever or whatever FUNDED the research? Instead, this is about real live and multiple patient experience and outcome–patient experience where lives are changed due to not going by the TSH but by symptoms; where labwork is used as the cart pulled by the horse of symptoms; where desiccated thyroid has been proven to be far more beneficial in the removal of our symptoms than thyroxine ever was or will be…and more. (And here is science that actually underscores our experience).
4. You state that the article “drew on research and advice that is evidence-based.”  And what about the evidence of millions of thyroid patients who have endured multiple and clear hypothyroid symptoms for years before the TSH lab test rose high enough to reveal their obvious hypothyroid state? What about all of us who have suffered for years in our own kind and degree while on T4-only meds like Synthroid, levothyroxine, etc? What about the irrefutable evidence of those whose lives have turned completely around thanks to desiccated thyroid and/or T3, especially after they treated the extreme side effects of being undiagnosed or undertreated all these years thanks to a clueless medical profession?
5. You refer to “credentialed doctors working at leading medical and academic centers” as your source of information: would it shock you to hear that MANY credentialed doctors are the very ones who have kept us completely sick for nearly sixty years??  Ask thyroid patients about all those doctors they saw over the years who were “credentialed”, and your eyes and ears will burn. And what about all the growing body of “credentialed doctors” who now have the courage to state that the TSH lab test is lousy (except for diagnosing hypopituitary), just as is T4-only treatment? They are many!
6. And finally, if your “goal and the motivation behind all of Good Housekeeping’s health coverage” is to find more effective treatment for all, do a follow-up article in an upcoming issue about the scandal of T4-only treatment, the poor use of the TSH lab test (which is measuring a pituitary hormone, not cellular levels of thyroid hormones), the experience of patients worldwide on T4, the experience of patients who lives made a complete turn-around thanks to desiccated thyroid or T3, the experience of patients with “credentialed doctors” who have been nothing more than condescending, ignorant, biased and dogmatically close-minded to our experience and wisdom in our own bodies!

Good Housekeeping do a PATIENT EXPERIENCE article!  Let your readers use their own wisdom about the “mass experience of patients worldwide” vs the “dogmatic, pharmaceutically-brainwashed “opinion” of a several misguided and credentialed medical professionals.”

YEEHAW!!

Three years ago this month, the book Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment came out with quiet fanfare–a complete patient-to-patient book chock full of information based on the successful experience of thyroid patients worldwide.  As the messenger of that information, I had a strong purpose: to create INFORMED patients who can then demand change in their doctors offices. Pro-active patients!  Educated patients!

But the reaction to it wasn’t quiet!

Thyroid patients have reported it was changing their lives.  To date, the STTM book has been sent, and in multiple copies, to Antiqua/ Barbuda, Austria, Australia, Belgium, Canada, Cyprus, Denmark, Finland, France, Germany, Iceland, Ireland, Israel, Malaysia, New Zealand, Netherlands,  Norway, Singapore, South Africa, Spain, Sweden, Switzerland, Thailand, and the UK. That doesn’t include the high volume amount of copies sent to US patients, doctors, and individuals in all 50 states and Puerto Rico.

Amazingly, yet not surprisingly, patients were discovering new information even a few months after the First Edition was published three years ago.  As a result, Laughing Grape Publishing LLC had to add, and continually update, a bookmark of updated information into all its books ordered directly from the publishing company.

Today, in the REVISED SECOND EDITION, all that extra patient information has been added, plus a LOT more.

• 36 more pages, by and for patients, plus changes & additions in every single chapter
• Much more detail on adrenal and HPA dysfunction and how to treat it
• Recognizing and dealing with Reverse T3
• Identifying and treating gluten issues as related to Hashimotos disease
• Iodine-use information in relation to hypothyroid, breast disease, Hashimotos, adrenal dysfunction, etc.
• More details on labwork preparation, plus what to look for in your results
• Why you need more than ferritin testing, and details on iron testing
• Updated information on brands of desiccated thyroid throughout the world, T3-only products, hydrocortisone, and more
• A completely NEW CHAPTER on supplements & foods which thyroid patients appreciate and use!

And, the price has been kept exactly the same.  Our loss; your gain, in the name of an important movement of needed education and change!

This was NOT an easy book to revise!  I had to go through it with a fine-toothed comb, removing some information, correcting other information, adding a lot more…besides working on making it more readable. I am not a writer by profession. Sometimes I felt like a “cuckoo’s nest mental case”  trying to balance the work on the Revised edition with my other activist responsibilities and a busy private life.  Is it perfect?  Nope.  But as I stated in the First, some information is right on target, some is at least close to the bulls-eye, and other info will fall into place as we continue to learn. That’s why you need to see it as “guide” of patient experience, and to use it to become PROACTIVE in your relationship with your doctor and the entire medical profession.

Today, you can order either copy. As of today, the First Edition has been lowered to 14.95 until supplies run out, which will be soon. The Revised Second Edition is taking pre-orders, and it looks like books will start being sent out in about 7-10 days.

You can go here to see a stand-alone website about the book, as well as here to be among the first to pre-order your copy.

THE STTM BOOK IN OTHER LANGUAGES

Yes, you will eventually be seeing the Revised Second Edition in various languages. That’s in the works right now, and no, I don’t yet know the dates. I’ll announce that here, so be sure and be signed up for this BLOG NOTIFICATION to the left under the links.

KINDLE and E-BOOKS

With no projected dates other than much later this year, you will first see an E-book. Later, we’ll be looking at Kindle. Again, announcements will be made, and you’ll have to be patient.  In the meantime, ordering the book is your best choice right now. Besides, having this book in your lap in the doctor’s office is powerful to many of them, since doctors can have silly thoughts about “internet” information.

And more is coming which will be announced as they occur.

Will it ever end? On March 21st, 2011, from the Endocrine Today website, comes the article Hypothyroidism only partially responsible for decreased quality of life in Hashimoto’s thyroiditis. And this article has so many troubling comments and wording that it has made some thyroid patients question whether their Endo can really help then.

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.)