tsh tags

Each day, when I think about the passing of Dr. Lowe (which you can read about here), I reel in shock at this huge loss in our fight for better thyroid treatment and SANITY.

And now we have to ask: who will fill those shoes when it comes to the continuation of thyroidscience.org and the courageous message of Dr. Lowe?? Even the front page contains an important article  titled “TSH is Not the Answer,” a report Dr. Carol Rowsemitt and Dr. Thomas Najarian: Their explanation and verification  i.e. Dr. Lowe fought for what PATIENTS ALREADY KNOW TO BE TRUE about the lousy TSH lab test!

And Lowe announced that he was next coming out with an article concerning ” false statements of fact online about T3-containing thyroid products including Armour Thyroid” by The British Thyroid Association and UK Royal College of Physicians.  He continued: ” The scientific facts patently show the falsehood of the two organizations’ statements. Is this a failure of responsibility to study scientific issues before making public pronouncements on them? Or do the statements constitute science fraud?”    Unless it was already written, we might never see this article. But we all know the truth.

The loss of Dr. Lowe propels me to ask: Who do YOU see as a medical professional who has the following qualities:

• high intelligence
• an interest in true science rather than blindly following research with outcomes based on who paid for certain studies
• the courage to speak the truth, even if it goes against the grain of staid medical opinion
• compassion for thyroid patients and the willingness to listen to their experiences

Who, as a medical professional, can patients give a vote of confidence to as someone who can continue the legacy of Dr. Lowe?  Propose some names by commenting on this blog post below. (If you are reading this via the Email Notification, click on the title of this post, which will bring you directly to the blog post where you can leave a comment).

A MESSAGE FROM ELLEN GETTENBERG of ACELLA (THE MAKERS OF GENERIC DESICCATED THYROID CALLED N.P. THYROID)

Over the past several weeks, Acella has experienced production planning issues associated with NP Thyroid.  We sincerely apologize for this and want to inform our valued customers that we are putting measures in place now to prevent any further limited supply.  We anticipate improved availability by the end of January.  Please check back here on our website for further updates.  If you need additional information, please email us through the “Contact Us” page on NPThyroid.com.

Ellen Gettenberg
Director, Marketing| Acella Pharmaceuticals
9005 Westside Parkway | Alpharetta, GA 30009
www.acellapharma.com

WANT TO PAY IT FORWARD AS TO WHAT STTM HAS GIVEN YOU?

Out of my own savings last Fall, I paid for three months in hiring a publicist for the message of Stop the Thyroid Madness…i.e. through the end of December. My goal is to reach far more who may not understand WHY they have problems thanks to the lousy TSH lab test or T4-only meds like Synthroid, Levothyroxine, etc. And she has done a fabulous job in getting interviews and articles out there–you can see what she has done on the donation page mentioned below.

After December, patients donations completely paid for January. Now we are working on February, and nearly half way there. But this will end sooner than later if more donations don’t come in. Go here to read about it and Pay It Forward.

HAVE YOU CONSIDERED YOU MAY NOT NEED HC TO HEAL YOUR ADRENALS? OR IF ON HC, YOU CAN DO THIS A LOT FASTER?

UK thyroid and adrenal patient Paul Robinson made a VERY interesting discovery–that he could heal his adrenals with his unique use of T3. Yup, and he SUCCEEDED. And it’s quite exciting news for adrenal fatigue patients.  Additionally, if you are on T3, his  T3 titration process alone is vastly superior to most other recommendations in the use of T3, and means you can use less!!

Take the time to find out for yourself!!  There’s a good summary of what he discovered in the new STTM Facebook Adrenals group (and please note this group is for PATIENTS ONLY, not medical professionals. And for approval to the group, you canNOT have a hidden info and friends. We have to be this way to keep out spammers, and to see that you are who you say you are).  You can also order his book from this Recommended books page on STTM. To order the patient-to-patient STTM book, go here.

HOW T3, DOSED A CERTAIN WAY, CAN REVERSE YOUR ADRENAL FATIGUE! 

UK’s Hashimoto’s patient Paul Robinson has been a successful T3-only treated patient for more than 13 years, especially because he never did well on either synthetic T4, nor on the combination of T4/ T3. And he learned so much that he compiled all the information on T3 dosing in his book called Recovering With T3: My Journey from Hypothyroidism to Good Health Using the T3 Thyroid Hormone.  You can order it here.

But what I especially find interesting is how he used T3 to cure his flagging adrenal function rather than HC (hydrocortisone).  And here is a short summary of key points, and you can read more by getting his book. He calls this The Circadian T3 Method.

1. Most of the day’s cortisol is made in the last four hours of sleep, which means your adrenals work their hardest during that time. And like any cell in your body which need T3 to function well, so do your adrenal cells…especially during the time they work the hardest.
2. With the above in mind, it made sense to Paul that if adrenals are struggling with low cortisol, they clearly need T3 in that early morning 4-hour window in order to function better. How did he do it?  He moved his first T3 dose to one hour before he would normally wake up, held it for a few weeks to see the results, went earlier another half hour, held it for a few weeks to see the effect…and so on. He obtained a lot of data to ascertain what was happening–urine cortisol, blood pressure, pulse, etc. He found that the time which gave his adrenals the biggest boost, and thus better function, was 3 1/2 hours before he normally wakes up.  But he feels that others might find that anywhere in the first three hours of that four hour window, and it’s important to move slowly within that area to find the right time for you based on data.
3. This protocol needs certain supplements, which include high potency B complex, B12, Vit. C, Vit. D and a good multi mineral. He goes into detail in his book.
4. This protocol would not work if someone has Addisons, Hypopituitary or Diabetes…and may not work if you have pre-Diabetes blood sugar issues. It’s blood sugar in the cells that reacts positively with T3.

There is much more detail than the above. And Paul makes it clear that this treatment for adrenal fatigue and proven low cortisol should only be done in your relationship with your doctor. So you will need his book to understand it all. We have also been discussing this protocol in the new STTM Facebook Adrenals group–created for friendly discussion of your experiences and anything you learn elsewhere.

SELENIUM, EVEN WITH HIGH RT3, IS A MINERAL YOU NEED!

Check out what thyroid patient Cheryl Alvey has put together about the key importance of selenium for thyroid patients: http://www.stopthethyroidmadness.com/selenium

WHY THYROID PATIENTS NEED HEALTHY LIVER FUNCTION

Not only is your liver the largest organ in your body, it does an astonishing amount of work to keep you healthy. It helps maintain good blood sugar levels, metabolizes fats and proteins, helps eliminate toxins via the bile, stores important vitamins and minerals, and makes cholesterol–the pre-cursor for estrogen, progesterone, testosterone, cortisol, DHEA, and aldosterone.

As for thyroid, your liver is is equally as important:

• promotes type 1 deiodination for the conversion of  T4 to T3
• helps with transport of T4 and T4 throughout your body

So what happens if your liver isn’t healthy?  Transportation is less optimal, and the deiodination type 1 will change to type 3, meaning T4 will convert to excess RT3! And guess what can make your liver unhealthy? Continued hypothyroidism, which happens to all too many who are on T4-only medications, or those left undiagnosed due to the TSH. Hypothyroidism is worsened with adrenal problems, and low iron.  And liver function can become unhealthy or stressed if you eat poorly  You can read more about all this here.

In the meantime, what can one do to promote better liver function? Milk thistle is one highly recommended way by many (use Milk Thistle supps from the seeds to avoid estrogenic affect). Also look into dandelion root /leaf, Sassafras, Burdock, Goldenseal and Yellow Doc root, Red Clover and Echinacea root. Ask someone knowledgeable at your local health food store.

I DID THE JUICING FAST

Yup, I watched the DVD “Fat, Sick and Nearly Dead”, and it just resonated with me–both for my yearly weight loss diet which I do after Christmas (to take off the result of all those Christmas goodies), and the immense nutritional benefits.  So I got a new juicer (I chose the Masticating juicer because it gets out more juice-see those on Amazon), shopped for all the veggies and fruits I’d need to use, and began. As I write this, I am approaching my 12th day. Yes, I’ve lost weight–belly is smaller…so is face. But even better, I know I’ve done a wonderful thing for my body with all the nutrients one gets from the juicing of a variety of mostly veggies, and some key fruits.  I’ll probably finish soon, but will always do juicing for veggies a few times a week, because I simply can’t stand them otherwise. And juicing them is quite good if you add a juiced fruit like an apple.  Cheers!

PATIENT YOU-TUBE STTM VIDEOS

See thyroid patient Sam Aliyev’s latest YouTube video.  If you do one about the message of STTM, let me know and I’ll post about it.

Has STTM benefitted you?? Want to Pay It Forward? Go here.

IMPRESSIVE GOOD THYROID NEWS!  

After a grueling week by the United Kingdom’s General Medical Council (GMC) , it was decided that the UK’s most renowned thyroid practitioner, Dr. Gordon P. Skinner, should have all his restrictions lifted and his Fitness to Practice restored!

On November 11th, 2007, the GMC had decided that the beloved Dr Gordon Skinner was not fit to practice, simply because in 2005, he dared to listen to and dose by a patient’s clinically-presented thyroid symptoms rather than her TSH labwork–the latter which fell in the erroneous normal range.  Even more dastardly, felt the GMC, Skinner was going to treat the patient without a referral letter from her GP, and may have failed to contact the GP. Heaven Forbid!!

Says a recent statement from TPA-UK:

The GMC have agreed that Dr Skinner was not acting dangerously in initiating treatment with thyroid hormone replacement for those patients who had normal thyroid function tests but who suffered several symptoms and signs of hypothyroidism. They also agreed that for those patients who did not do well on levothyroxine-only therapy, the use of natural desiccated thyroid extract (i.e. Armour Thyroid) was a safe and effective thyroid hormone replacement that doctors could prescribe, even though it remains unlicensed. This is a precedent - and one that the British Thyroid Association are most definitely very unlikely to be happy with.

There’s something huge to learn from this!  It’s called PATIENT POWER, my thyroid friends, and what we must always practice in our fight to get far better treatment. Namely, what impressed the staff of the GMC was the sheer volume of the general public who attended the hearings in support of Dr. Skinner.  Additionally, there was a nicely bound volume of over 2000 patient citations in support of him.

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SURVIVING STRESSFUL EVENTS EVEN WITH ADRENAL FATIGUE

Having adrenal fatigue with its low cortisol can be a challenge, even while you are on Hydrocortisone for your treatment (HC). So thyroid and adrenal fatigue patient Robin had to learn the hard way how to do something very stressful and still survive, adrenally. After moving to a new house, she created these excellent tips for dealing with any stressful event and preventing an adrenal meltdown:

1. REST REST REST as much as you possibly can! Just sit and stop moving, give yourself permission to stop “doing” and just BE! Let others do the work.
2. Don’t be afraid to stress dose with your HC!  Remember that a healthy person’s adrenals can provide over 100mg per day when in very stressful circumstances! Of course this is not healthy long-term, but we do what we have to do to survive!
3. Remember that if you stress dose, you’ll need to start a tapering down by 2.5 mg, holding for several days, then taking off another 2.5, etc until you work back down to your “regular” daily dose–the one that gave you stable Daily Average Temps.
4. SALT! Drink lots of salt water (or juice–I prefer my salt in watered-down juice or other flavored drinks), salt your food heavily, and even eat lots of salty olives, if you like them! The adrenals thrive in salt, and this can also be important if your aldosterone levels are also sluggish.
5. Eat lots of protein and fat and try to keep the carbs as low as you can!
6. Give yourself permission to be a hermit for a while. People can wait for you to return their calls. Just enjoy some quiet and solitude for a while.

PAYING FORWARD WHAT STTM HAS GIVEN YOU!

Janie began a contract with a top-notch publicist to help get the word out to millions about the problems with T4-only, or for those remaining undiagnosed or undertreated due to the TSH lab test (similar to what Dr. Skinner above tried to avoid for one of his patients). She already has interviews scheduled and more gigs are coming.

But this contract won’t last long–it’s just too expensive for Janie alone. So your help is needed to reach more people, and soon.

Go here and read all about it.

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READING THIS VIA THE EMAIL NOTIFICATION?? If you want to comment on anything on a blog post, click on the title of this post, and you’ll be taken right to the actual post. Then scroll down for the Comment square.

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.

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.”