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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.

(Reading this via email notification?  Remember to leave a comment RIGHT on the blog post by clicking on the title of this blog post in your email.)

As thyroid patients, we are continually seeking doctors who understand successful patient experience. It’s not always easy.  So when we do find a good doctor, we’re ecstatic. But little do we know the challenges a good doctor faces!  The following was sent to me by a progressive, open-minded MD, of whose name I have removed to protect him from his own medical board. Be appalled and amazed. I was.

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Janie, it is not infrequent that we are sent messages like this from Pharmacy Benefits Managers. Here is a typical letter with my reply.

Considerations for Your Review

1. Drug Safety Consideration: ARMOUR THYROID Use in Seniors  Our claims record suggests that your older patient is receiving ARMOUR THYROID. Thyroid hormones should be dosed cautiously in seniors due to a potential risk of cardiac effects. Desiccated thyroid products contain variable amounts of T3. T4 and other iodothyronine compounds. Because older patients have a high prevalence of occult
cardiac disease, the Beers criteria generally recommend transition to a safer alternative (e.g.. agents like levothyroxine with more standardized hormone content). Please consider the potential risks versus benefits of therapy for your patient.

Reference(s):
1. Thyroid Agents. In: McEvoy GK, ed. AHFS: Drug Information. Bethesda, MD: American Society of Health-System Pharmacists; 2008:Sec 68:36.04.
2. Pick DM et al. Updating the Beers Criteria for Potentially Inappropriate Medication Use in Older Adults. Archives of Internal Medicine. 2003; 163:2716-2724.
3. Semla TP et al. Geriatric Dosage Handbook. 13th ed. Hudson, OH: Lexi-Comp; 2007.

(And this brilliant doctor’s reply:)

Dear  xxxxxxx

Re: Armour Thyroid Products

I invite your attention to the P.I. (product information) in the PDR on levothyroxine (Synthroid). I quote:  PRECAUTIONS “Patients with underlying cardiovascular disease—Exercise caution when administering levothyroxine to patients with cardiovascular disorders and to the elderly in whom there is an increased risk of occult cardiac disease.”

DOSAGE AND ADMINISTRATION

“Caution should be exercised when administering SYNTHROID to patients with underlying cardiovascular disease, to the elderly, and to those with concomitant adrenal insufficiency (see PRECAUTIONS).”

I read your statement that says, “Desiccated thyroid products contain variable amounts of T3 and T4 and other idothyronine compounds.”  Forest Pharmaceuticals has stated their product is standardized as published in the PDR: “ One (1) grain or 60 mg of Armour contains by assay 38 mcg levothyroxine (T4) and 9 mcg liothyronine (T3).” I do not ever remember Armour Thyroid ever being recalled for stability or lack of standardization.

However, Synthroid and the other forms of levothyroxine have had significant problems.

SYNTHROID AND OTHER T4 PRODUCTS were subject to FDA NOTICE in the FEDERAL REGISTER: AUGUST 14, 1997 (VOL 62, NUMBER 157). These were the drugs that were not well standardized and were not stable. I quote from the report: “Some of the problems reported were the result of switching brands. However, other adverse events occurred when patients received a refill of a product on which they had been previously stable, indicating a lack of consistency in stability, potency, and bioavailability between different lots of tablets from the same manufacturer.”

Thank you for caring for the health of the patients receiving medications from your company. I request that you check your facts fully before issuing such flyers.

Respectfully,

xxxxxxxxx, M.D.

Cc: FOREST PHARMACEUTICALS

BRAVO TO THIS DOCTOR in the face of complete ignorance!!

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STTM HAS HIRED A PUBLICIST and YOUR HELP IS NEEDED!

Do you value what Stop the Thyroid Madness has given you??  Something has to be done to reach millions of individuals still lingering without a diagnosis due to the TSH, or suffering due to being on T4-only meds! You and I run into them DAILY and don’t even know it!  Or we have many family members in the TSH/T4 category. And the media does NOTHING about this scandal.  STTM has hired a publicist, and you can read about it here. But I can’t do this alone. If you value Stop the Thyroid Madness, please considering helping.

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TPA (Thyroid Patient Advocacy) STILL NEEDS YOU TO REGISTER 

Have you registered for the Counterexamples to T4-only?  So far, 1437 have, and Sheila Turner is determined to get that number to over 2000 at least. There were 900 participants on those flawed studies showing that T4/T3 combination worked no better than T4-only, and we have got to prove our point that this is wrong.  All you have to do is answer 3 very short questions.  http://www.tpa-uk.org.uk/register_of_counterexamples.php

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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.

MAY YOU HAVE A FUN, HAPPY AND HEALTHY DAY!   Janie

The positive effect of kindness on the immune system and on the increased production of serotonin in the brain has been proven in research studies. Serotonin is a naturally occurring substance in the body that makes us feel more comfortable, peaceful, and even blissful. In fact, the role of most anti-depressants is to stimulate the production of serotonin chemically, helping to ease depression. Research has shown that a simple act of kindness directed toward another improves the functioning of the immune system and stimulates the production of serotonin in both the recipient of the kindness and the person extending the kindness. Even more amazing is that persons observing the act of kindness have similar beneficial results. Imagine this! Kindness extended, received, or observed beneficially impacts the physical health and feelings of everyone involved!   ~~Wayne Dyer

I promise myself…to be so strong that nothing can disturb my peace of mind; to talk health, happiness, and prosperity to every person I meet; to make all my friends feel that there is something worthwhile in them; to look at the sunny side of everything and make my optimism come true; to think only of the best, to work only for the best, and to expect only the best; to be just as enthusiastic about the success of others as I am about my own; to forget the mistakes of the past and press on to the greater achievements of the future; to wear a cheerful expression at all times and give a smile to every living creature I meet; to give so much time to improving myself that I have no time to criticize others; to be too large for worry, too noble for anger, too strong for fear, and too happy to permit the presence of trouble; to think well of myself and to proclaim this fact to the world, not in loud word, but in great deeds; to live in the faith that the whole world is on my side, so long as I am true to the best that is in me.  ~~Christian D. Larson

Life expectancy would grow by leaps and bounds if green vegetables smelled as good as bacon. ~~Doug Larson

Animations provided by MyspaceAnimations.com

Finally…I’m back to posting on the STTM blog!  Sometimes, I am so busy focusing on certain facets to my activism that I neglect other areas. Oops.

Are you enjoying the change in your weather? I am tremendously.

If you have the revised STTM book (and I strongly recommend it–there are important revisions), you will note a brand new chapter about supplements and foods. I have also gathered up the following information on supplements that just might interest you!
Rhodiola, an herb and adaptogen, can be a great way to counter stress and protect your adrenals!

I often speak of certain herbs which thyroid patients should look into if they are under a lot of stress, or their adrenal cortisol saliva test shows slight sluggishness, or even slightly high cortisol,  as a result of a variety of stressors. One in particular is Rhodiola Rosea, and I am frankly impressed with it.

Since Rhodiola grows wild in Siberia, Russians have been brewing it as a tea to combat sluggish energy for a long time! And the Chinese have been aware of its great properties for eons as well.  As an adaptogen, it’s said to decrease fatigue, stimulate your energy levels, and lower depression, i.e. it can do a great job countering the effects of stress, whether biological or psychological.  See this research study.

It’s also known as an anti-oxidant, and studies show it can have anti-tumor properties. Different brands of Rhodiola contain different amounts of its important properties, so read the label.  You might want to avoid taking it in the evenings, as it can stimulate too much as you prepare for sleep. I keep Rhodiola on hand to use if I’m going through stress of any kind!  P.S. Please note that Rhodiola won’t be enough if your cortisol levels are severely low. You may need hydrocortisone in working with your doctor.

Why keeping your B-vitamin levels up can be so important!

Early in my journey to feeling wonderful again with desiccated thyroid, I remember a doc stating how important it was to keep up with my B’s. Why?  Because with an improving metabolism means a greater need for B-vitamins. Additionally, we may not be absorbing nutrients very well due to excess food processing, so keeping up with this is critical, even if you don’t “feel” the results.

What’s the big deal with B vitamins? They help your adrenals deal with stress better, assisting the production of all adrenal hormones. i.e. your adrenals are BIG users of B vitamins.  They help breakdown other nutrients, which improves energy.  They help in the production of serotonin, thus helping you to avoid depression. They enhance your immune function, and help with your hair, skin and muscles.  Wiki states they reduce the risk of getting pancreatic cancer.

I have tried to take liquid B-vitamins before, and despise the taste.  So I use a good quality, high dose pill form.  Some do better taking each B vitamin individually. Go here to read about vitamin B12 in particular, tho ALL of them are imporant.

Are you supporting your liver? It’s actually important for thyroid patients. 

There have been many good discussions on the STTM Facebook discussion group about our livers. Why is that large organ so important? For one, it’s a major detoxer!  We need it to function well to help remove that which we do NOT want in our bodies…such as excess RT3.  It plays a strong role in digestion through the production of bile, helps breakdown carbs and proteins, produces insulin-like growth factor (IGF-1)  and a bag full of other good activities. You can’t do well without good liver function.

How to support it? I am personally using a liquid product called Liver Life.  It contains mushrooms and Milk Thistle seeds–both important for good liver function.  Others also choose to do a liver cleanse to remove toxins, lower excess RT3 and improve liver function. I suggest talking to a Naturopath about good products, or do an internet search. Patients in groups can also help.

Speaking of depression…look what 5-HTP did for this gal.

Depression is all too common when on the inadequate T4-only meds like Synthroid or levothyroxine. Ridding it is one huge benefit of switching to desiccated thyroid, or correcting poor adrenal function and low iron.  But there’s a possible solution until you better treat your thyroid–5-HTP.  This chemical is a natural way to raise your serotonin levels,  which helps to raise your mood.

One gal had severe depression (which in turn can cause suicidal thoughts in some.)  Her Naturopath had an idea–to start taking 800 mg of 5-HTP a day, starting immediately with five pills before bedtime that very night. It worked.  She explains “The 5-HTP took me back to the bubbly, happy me that was there before the thyroid problems began — at least emotionally.”

Have asthma or any lung condition?  Then you may want to look at your Vitamin D levels, which are chronically low in thyroid patients.  

A female thyroid patient with low levels of Vitamin D got on supplementation with D3 to raise her levels. And to her complete surprise, her asthma went away.  She explains:  After I realized that my asthma was gone, I googled “Vitamin D and Lungs” and found out that it’s being studied all over the world.  Here’s just one quote she picked up: “In a recent article from the American Journal of Respiratory and Critical Care Medicine, researchers looked at Vitamin D2 and D3 levels in adults with asthma. They also measured obstruction in the lungs in various ways. They reported a significant correlation between Vitamin D levels and lung obstruction. In other words, the lower the Vitamin D level, the more obstruction in the lungs. In addition, decreased or insufficient Vitamin D levels were linked to greater “twitchiness” of the lung, which makes the lungs more sensitive.”

Click on last link below to view the Road to Recovery in your thyroid journey.