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Get ready to be blown away by the words of this doctor! He criticizes his OWN colleagues, and rightly so!

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.

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Why do some patients escape adrenal dysfunction?? I think I know why I did.

Anyone who has read my story of nearly 20 years of absolute misery on T4-only meds would think I’d be right in the thick of adrenal fatigue / HPA dysfunction and low cortisol.  Those were horrible, miserable, stressful, debilitating years.

Yet, I escaped it.

For awhile after I entered the thyroid patient activist field, I felt guilty. That was especially true as I saw how terribly people suffer with low cortisol.  But I also realized there was something potentially amazing to be discovered as to WHY I escaped it.

But years went by, and I have always been extremely busy as an activist: daily emails to take care of; constant updates to the website, keeping track of Yahoo and Facebook groups; thinking about and writing the blog; activities around the book, phone consultations, and so much more.  I have also fought to have an important private life.

So, it wasn’t until recently that I readdressed this question: why did I escape adrenal dysfunction? Was it genes which gave me strong adrenals?? That thought has drifted through my mind many times.  But I wasn’t sure. So recently, I took some time to really search my past to find answers. And something else really stood out.

Namely, because I had always been a fitness and health buff, I was big into supplements. Sure, I was unable to do hardly anything about fitness part of the equation–my T4-induced and crippling dysautonomia killed that.  But my belief in supplements never ended.   That was impressed into me by my mother who always stressed taking a vitamin pill as a child.  I also remember her putting my cigarette-smoking Dad on Vitamin C  in the 1970’s, having read it might delay his inevitable lung cancer. (It was too late.)

So when I became a young adult, married with little children, I learned even more about supplements, and took them. And one thing I remember always taking all those years as a young adult was high amounts of Vitamin C.  High amounts of Vitamin C!! That stood out to me.  And below are facts about Vitamin C and adrenals:

VITAMIN C and ADRENALS:

  1. “Of all the vitamins and minerals involved in adrenal metabolism, vitamin-C is probably the most important. It is essential to the adrenal hormone cascade and manufacture of adrenal steroid hormones.  It acts as an antioxidant within the adrenal cortex.” ~ www.bluemountainrx.com/adrenal.htm
  2. “While the adrenal glands need numerous nutrients to function normally, perhaps the most important of them all is vitamin C. The highest concentrations of vitamin C reside in the eyes, brain and adrenal glands. ~ http://www.adrenalfatiguefocus.org/adrenal-fatigue-and-vitamin-c.html
  3. “Healthy adrenal function requires vitamin C, and some of the highest concentrations of vitamin C in the whole body are found in the adrenal glands.” ~ http://www.naturalnews.com/029842_vitamin_C_adrenals.html
  4. “Vitamin C is utilized by the adrenal glands in the production of all of the adrenal hormones, most notably cortisol. When you are faced with a stressful situation, your vitamin C is rapidly used up in the production of cortisol and related stress-response hormones.” ~ http://www.adrenalfatiguerecovery.com/vitamin-c.html
  5. “The adrenal gland is among the organs with the highest concentration of vitamin C in the body. Interestingly, both the adrenal cortex and the medulla accumulate such high levels of ascorbate. Ascorbic acid is a cofactor required both in catecholamine biosynthesis and in adrenal steroidogenesis.” ~ http://www.ncbi.nlm.nih.gov/pubmed/15666839

There is much more on the net than the above, as well. And in fact, the important relationship between Vitamin C and your adrenals was proposed in 1951. This was huge, to me, as to why I may have escaped adrenal dysfunction. Even the use of B-vitamins and magnesium are important, tho I don’t remember what I was taking of those.

ANOTHER CLUE: I had a conversation with a gal recently. Like me, she suffered a long time, yet did not fall into adrenal fatique. I asked her why she felt she escaped it. She explained that she had worked for a naturopath for many years, and thus, took many supplements, including high dose Vitamin C. I was dumbfounded.

MY CONCLUSION: Whether I have found the irrefutable reason as to why I didn’t fall into adrenal fatigue and low cortisol may not be answered inconclusively. And who knows if some of us just have genetically strong adrenals.  But I lean to believe that my early use of high-dose Vitamin C all those miserable years may have been a huge factor, along with B-vitamins which can also be depleted. Today, I take a minimum of 2350 mg daily via my buffered C powder, and in water, and usually double that amount, as I like taking it before bedtime for the magnesium.  I am also a fanatic about adding squeezed lemon to my water or occasional fluoride-laden iced tea.

WHAT THIS MEANS FOR YOU: Adrenal patient experience has shown that once your adrenals or HPA function drops, as does your cortisol, the use of hydrocortisone is usually the best way to treat it.  See the adrenals page here.  And patients have learned in leaps and bounds on how to use HC with their open-minded doctors (…if they can even find a doctor who looks beyond his dogmatic training.  It’s not easy.)  But the use of high dose Vitamin C might not be something you want to ignore, whether you have to use HC or not:

  1. “Sufferers of adrenal fatigue are hit particularly hard by vitamin C deficiency. The production of cortisol and other adrenal hormones, characteristically low in this disorder, is dependent on an ongoing supply of vitamin C. If this supply dwindles, so too does the secretion of adrenal hormones. This feeble response from the adrenal glands places the body under further stress, further increasing demand for the vitamin C. The importance of intervention with the appropriate amounts of this nutrient should not be overlooked.”   ~ http://www.adrenalfatiguefocus.org/adrenal-fatigue-and-vitamin-c.html
  2. Have you heard of Scurvy? This is a progressive disease from the  deficiency of vitamin C that ultimately leads to death.  And Linus Pauling wrote in his 1979 book, Biomolecular Sciences,  that death from Scurvy is actually “adrenalcortical failure”. That is profound as to the importance of Vitamin C with YOUR adrenal health and/or recovery.
  3. “In two separate studies about vitamin C supplementation (1,000—1,500 mg per day for one week), ultramarathon runners showed a 30 percent lower cortisol level in their blood when compared to runners receiving a placebo. In another study of healthy children undergoing treatment with synthetic corticosteroids, 1 gram (1,000 mg) of vitamin C, consumed three times a day for five days, resulted in significantly lower cortisol levels compared to healthy children given a placebo. In a study of lung-cancer patients, a dose of 2 grams of vitamin C, given daily for one week prior to surgery, was able to bring elevated cortisol levels (resulting from the surgery) back to normal ranges in a significantly shorter period of time compared to patients receiving a placebo. ~ http://cortisolconnection.com/ch8_3.php

What about you? If you escaped adrenal dysfunction while going through years of misery on T4-only meds, or being held hostage to the lousy TSH lab result, why do YOU think you escaped it?

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* IODINE: Finally, I have updated the iodine page on STTM–long overdue.  Thanks to VRP for pointing out that their links have changed.  You can read many different links about iodine, the controversies and more, and decide for yourself what is right for you.

* FINDING A  BETTER DOCTOR: Want to try to find a better doc that the vast majority of cows…oops, doctors? Go here.

* TALK TO OTHERS: Talking to other patients is what started me on new path years ago. You can too, here. Scroll down to view them all.

 

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A legendary soccer player with hypothyroid who was forced to quit, plus one creative YouTube video.

A guy posted about this one of the STTM Facebook groups, and I found it hauntingly familiar. When I was in my early 30’s, I was forced to quit my beloved career as a well-trained and talented fitness instructor due to hypothyroid complications causing debilitating dysautomia reactions thanks to T4-only medications. It was very grievous and hard.

But famous Brazilian soccer football player Ronaldo, who was the all-time leading scorer at the 2006 World Cup,  has had to retire because the game rules FORBID him from taking the hypothyroid meds he needed, even if they have been the lousy T4-only levothyroxine meds. i.e. the rules see taking thyroid hormones as against the anti-doping rules.

What a shame. He’s young, 34 years old, and could have continued with a great career. But you also have to wonder how long he would have lasted at that, because Brazil doctors are still putting people on T4-only medications like so many other clueless doctors around the world.

You can read about it on CNN here.  Did you identify with losing a career or hobby thanks to hypothyroidism? What’s your story?

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I get really interesting emails from folks, and one arrived last week from Brian, the creator of a YouTube video called Our Holy Miracle of the Infallible TSH Test that he wanted me to view.

I confess that when I first saw it, I thought it was quite bizarre! Wasn’t sure what I thought of the humor with the female as she was dressed.  But the more I thought about it, I also see it as extremely creative, a good sense of humor, and a pertinent message. In fact, it may strongly appeal to younger folks because of it’s intentional hip irreverence.  So, go there with an open mind and sense of humor, and you just might like the message as I do and others are! http://www.youtube.com/watch?v=tOb2POQGE6g

Note: if you are reading this via the Blog Notification and want to comment, click on the title of this post, which will take you directly to the blog and where you can leave your comment.

* The hip (cough) Stop the Thyroid Madness t-shirts are slowing running out, so before they do, you can order yours from here.

* Prefer talking one-on-one? You can schedule a paid consultation with Janie at the bottom of this page.

* If STTM has helped you, make a donation to the hosting fees here.  The popularity of this site has resulted in much larger fees and your help is very appreciated.

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Electrolytes, Stress, A1C and diabetes, FDA, Las Vegas and more!

I’m amazed at lingering problems since being on T4: Though I’ve been on desiccated thyroid for 8 years, and do quite well since correcting low ferritin twice thanks to the lousy T4-only treatment, I discovered that my RBC magnesium is low, as I suspect my RBC potassium is, as well–all probably down due to chronic economic stress from this lousy economy.  But it underscores that we all have to be vigilant and not hesitate to periodically get minerals and electrolytes tested, especially RBC (Red Blood Cells), as well as anything else your doctor recommends, or you read about. Labs you can do yourself are here, then share with your doc. You can read about potassium issues here.

Under stress with the economy or the holidays? When stressed, I love and use the herb Ashwagandha. It’s been used for thousands of years in Ayurvedic healing, helping your immune system and stress response.  High dose B-vitamins are said to help counter anxiety and depression. Vitamin C is huge for your adrenals like the B’s, and has been known for years to counter the effects of stress. In fact, stress depletes it, so they state you are wise to raise it when under stress.  (Is Vit. C why I never got adrenal fatigue when I deserved to get it? I always took a lot.) Also recommended include the herbs Valerian Root, Marshmallow, Lemon Balm, Chamomile tea, Passionflower, and more. But first do research on any herbs and talk to your doc.

Hypothyroidism can falsely raise your A1C, implying you have diabetes even with normal blood glucose. Just got word from thyroid/adrenal patient Jackie about this study concerning the A1C test, here.  In turn, those on thyroid treatment saw their A1C fall.  We don’t know what the thyroid meds used were, but imagine even better results if on desiccated thyroid, which many patients report does a much better job than T4, especially in the presence of optimal ferritin/iron and adrenal function.

Don’t be complacent: register yourself: Sheila of TPA-UK is working to create a register of patients who have had continuing hypothyroid symptoms while on T4.  After she creates this register of patients, which right now only involves a couple of questions, she will create the a  Worldwide Register of Counterexamples to Levothyroxine (T4)-Only Therapy for. Register yourself here. This will also run alongside Dr. Gordon Skinner’s Worldwide Register, which you can also be a part of here.

Listen to a new video produced by the FDA about drug shortages here. I wonder what our own 2009 shortages with Armour and Naturethroid played a role in this video? Wonder if the FDA will ever admit that they were partly to blame for this shortage by shutting down the 2009 generics? Has anything been left out of this video?

No, Las Vegas Review-Journal. Hypo get undiagnosed because of the lousy TSH, not “subtle” symptoms. Yes, this journal did a recent article, quoting AACE as stating half of thyroid patients remain undiagnosed. The article then states it’s probably due to symptoms being very “subtle” or “very similar to other health problems such as anemia, fatigue, depression, slow metabolism and a wide array of other diseases.”  GROAN. It would be nice if these articles on hypo got it straight: hypo remains undiagnosed because of the lousy TSH lab test, which too many Endocrinologists worship, and because they fail to noticed the obvious symptoms of a hypothyroid state, which include anemia, fatigue, depression, slow metabolism and a wide array of other diseases. i.e. those ARE the symptoms of hypo, not “other health problems”.  When oh when will reporters DARE to state what patients have learned??  (Oh, and guess who included a link to this article in their email Thyroid Weekly? The Endocrinologist-loving, TSH-loving American Thyroid Association.)

Have a great holiday season!!

Janie

P.S. HO! HO! HO! The publishing company will send a book for you to a friend or loved one for a Christmas present. Go here.

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A Pandora’s Box is being opened, and some thyroid patients will have strong opinions

When I found out about natural desiccated thyroid in 2003, which at the time was Armour (and when it used to be a better product), I was lucky to find a Nurse Practitioner to put me on it, even if I had to drive far.  Today, I use a different doctor who totally supports my new health on desiccated thyroid. Natural desiccated thyroid has saved my life.

I’ve been lucky. But some thyroid patients have not.

It’s been clear that a certain percentage of thyroid patients, who desire to be healthy and live again after the nightmare of T4-only treatment, have had a hard time finding a doctor to either prescribe desiccated thyroid, or to understand how to dose it even if they did prescribe it. Even harder have been those thyroid patients with adrenal fatigue in finding doctors who understand this widespread and debilitating condition and how to treat it.

As a result of the latter tragedy…and here comes the big elephant in the room…some thyroid patients will state they have felt forced to self-treat and find their needed medications via online websites in order to live again.

And now comes some breaking information that I think all thyroid patients who feel forced to self-treat, and even those who don’t but use legitimate prescription-required online pharmacies, need to read:

  1. Apparently, we now have a possible explanation of why “some” online pharmacies have disappeared: a company called LegitScript LLC, which seems to have some power to push online pharmacies out of business.
  2. Also, says PharmacyChecker.com, LegitScript has been targeting some of the “legitimate pharmacies” i.e. those who require prescriptions.
  3. And here’s another twist: PharmacyChecker.com, who is “the leading online verification company for U.S. and international online pharmacies” commends LegitScript for fighting the pharmacies who send out meds without a prescription, but does not agree with LegitScript’s attack towards legitimate on-line pharmaceuticals. If this is true, the former will concern thyroid patients who feel forced self-treat in order to have their health restored, and the latter is good news for those who use these “legitimate prescription-only pharmacies”.
  4. Additionally, there may be some governmental push to get ICANN, the organization that works with URL names of businesses, to forbid URL’s to certain pharmacies across the world, and that may have huge legal implications. Last week, the Santa Monica headquarterd eNom, which is a domain name registration and wholesaler, has agreed to work with LegitScript in “identifying customers who are operating online pharmacies in violation of U.S. state or federal law”.
  5. There is going to be a White House meeting on September 29th which is focusing on addressing “illegal online sales” via these internet websites.

You can read more about PharmacyChecker’s opinion about the White House and online pharmacies here and their opinion of Legitscript here. You can read about an investigation request against the president of LegitScrip here and his rebuttal here. I am just now reading about this, and reporting above on what I know right now. I’m sure there is more to come, and I also have no doubt that this is going to produce a lot of discussion and/or action by thyroid patients. If you want to contribute to discussion on this, here is where to go. BUT REMEMBER: unlike what has happened before, let’s keep a level head and stick to facts.

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