*****************************

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.

******

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.

****************************

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.

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?

************************

* 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.

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?

****************************

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.

I’m amazed at lingering problems since being on T4:

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.

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.

As a recent example, one gal wrote to tell me she had suffered from depression for so many years due to her poorly diagnosed and inadequately treated thyroid condition. And because her use of desiccated thyroid had hugely improved her mood, she was inspired by and had purchased the STTM bumper sticker about depression. You can see it here.

And unbeknown to her innocent husband, the bumper sticker went on HIS car.

And just two days later, she explains what happened:  My husband was coming from his cardiac rehab exercises to the shopping center locally, and when he got out of his car,  another car pulled behind him, blocking the lane.

Turns out that the other driver, a man, jumped out and wanted to know what the bumper sticker means.

She continued: My husband figured the guy meant his Marine Corps stickers but no, he meant the thyroid sticker. So my husband says, bewildered ‘What Thyroid sticker’?

After realizing it was there, the other man explains how his wife has been diagnosed with thyroid disease and her dr. wants her on antidepressants.

She said: “My poor hubby only knew that I feel so much better on Natural hormones and I am not as depressed as I was before. All he could tell him was “she got it off the internet”.

I’ll bet he saw the URL on the sticker, and his wife is going to get some life-changing information from Stop the Thyroid Madness.  So we can never underestimate how little things we say, or show, or do are going to make a difference in someone’s life.

I hope each and every one of you are being “thyroid patient advocates” and spreading the word to others. If you like using bumper stickers or t-shirts, go here.

***************************

ABOUT PROBLEMS WITH THE STTM SITE: There have been numerous problems with folks getting on STTM the last few weeks. The first problem was due to a software installed by my web designer to prevent attacks by spam bots. That was fixed. But if you visited during that time and use IE, just clear your caches. Others may need to use a different browser.  You then may be able to go back to your original browser.

But since then, more problems have creeped up. It’s called GROWING PAINS. i.e. STTM has become so popular that more problems pop up. And since we have limited resources, we just have to deal with them, one at a time. So please announce on all your groups that STTM has not gone away, that we are working to fix problems related to growing pains,  and to try again if they at first can’t get on. If you want to contribute to the hosting fees, go here:  http://www.dreamhost.com/donate.cgi?id=8074

*************************

TWO SITES YOU NEED TO REGISTER WITH:

1)  http://www.tpa-uk.org.uk/register_of_counterexamples.php A Register of Counterexamples to levothyroxine-only-therapy, set up by Sheila of TPA-UK.  ”Counterexamples” means all those symptoms which proved that T4-only meds do NOT work.  She will be using this to get the attention of doctors and authorities in order to re-examine the use of T4-only for all forms and degrees of hypothyroidism.

PLEASE NOTE: This questionnaire is only for those prescribed levothyroxine (T4-only) and who failed to get relief for the elimination of their symptoms, and who then started using a T3 containing hormone (either synthetic or natural). It’s also for those who were denied a diagnosis and treatment, and tried a T3 hormone containing product and found your symptoms became less.

2) http://www.worldthyroidregister.com/ A site established by Dr Gorder Skinner to gather as many signatures as possible to establish a Worldwide standard treatment for thyroid sufferers.

And on the last leg of my journey, I stopped and said to Carlin as she was walking out of her front door “Where you have been lately? I haven’t seen you out walking with your husband.”

Carlin and her husband Clint are probably in their late 70′s–both vibrant individuals and frequent walkers in the same area.

“Well”, she said wistfully as she glanced down the street I had just walked, “I have to go in Monday for a Pacemaker.”

Turns out she has fibrillations and other heart issues, and even walking from her bedroom to her living room can exhaust her.  I told her how well my mother-in-law has done with her pacemaker. She told me she’d be in the hospital for at least 3-4 days for the surgery and observation.

And as we were chatting over the low white fence, I couldn’t help but notice the scar on her neck–the same scar my own mother had from the removal of her thyroid years ago.  And the rest of Carlin’s story, and the reality of her story, made me want to punch the nearest electrical pole in disgust.

Carlin’s thyroid was removed over 40 years ago.  She remembers being on “2 grains of something”–clearly it was desiccated thyroid. And she says she felt really good. But she wasn’t on it long, as her doctor removed it and put her levothyroxine over 30 years ago. You know, that “new and modern” T4-only CRAP which doctors fell for like the blind following the blind beginning in the 1960′s until today. (The story behind the introduction of T4 onto patients in the early 1960′s is in Chapter One of the STTM book)

So I knew. Her heart troubles could be one of the many side effects of the inferior treatment of T4-only medications (which also include Synthroid, Levoxyl, Eltroxin, Oroxine…all of them). My own mother suffered the same fate while on Synthroid her entire life. And patients chat about this all the time on thyroid groups–heart issues while on T4.

I started probing. She has had issues with high blood pressure. Another typical side effect of the crap T4-only medication, and which is removed with desiccated thyroid. She has had issues with depression–another typical side effect of the crap T4-only medication, and which is removed with desiccated thyroid. She talked bitterly about the slew of medications she’s had to be on for years to counter all her problems, and which had given her bad side effects.

And the next worse thing she told me? She had acid reflux so bad a few years ago that they did surgery on her stomach. She had surgery for a condition which is VERY common with thyroid patients who are on T4 meds–low stomach acid from a lower metabolism, which causes acid reflux. i.e. a symptom of continued hypothyroidism which is CORRECTED when on desiccated thyroid.

It was hard to contain myself. Here was this vibrant, life-loving, intelligent woman who has been on T4-only for over 30 years and has endured health problems, surgeries, side effects from all sorts of money-grubbing pharmaceutical pills, and now, has to go in Monday for a pacemaker. And in all probability, most of what she has gone though could have been prevented if some doctor had been WISE enough to keep this woman on desiccated thyroid.

I am livid and sick to my stomach.

****************************

• Are you chewing up your Armour or Naturethroid? It will make the treatment far better, as it will release the desiccated thyroid from the excess cellulose.  If you are on compounded, you need to tell the pharmacist to stop using cellulose as a filler. On Erfa? You can do it sublingually.
• If you are reading this right on STTM’s blog, and would like to be notified of each blog post, just sign up to the left and under the links.
• Have you done labs and found yourself with high RT3? Get off Selenium for the time being, as it can help convert T4 to the RT3 along with the other reasons you make too much.
• Want to spread the word about far better treatment? T-shirts and bumper stickers are here.

So, while my husband sat in the car with the patience of a saint, I lingered. When she finished chatting and was heading to her car, I walked towards her and said gingerly “I overheard your conversation. Can I ask you about the fibromyalgia and your experience??” I couldn’t help myself.

As a Thyroid Patient Activist who has stood up to the inane allopathic failure in the diagnosis and treatment of hypothyroidism, I knew that the majority of cases of “fibromyalgia” were due to undiagnosed or poorly treatment hypothyroidism, as well as the accompanying hell of adrenal fatigue,  thanks to the garbage can TSH lab test or the stupidity of T4-only treatment like Synthroid.  Yet, here was a young woman, Mel, who was now the picture of health. What was her story??

Mel’s story was a tale of sudden onset followed by five years of misery, all over body pain,  immense fatigue, utter helplessness, debilitation, and neck lymph nodes SO swollen that they looked like two huge goiters–right and left. It was also a scenario of no firm diagnoses, yet no hesitation by doctors to make stabs– from fibromyalgia to an unknown chronic fatigue disorder.

But I knew right away what she probably had: acute Epstein Barr Virus (EBV) reactivation.

I knew because I had the exact same malady which once took away more than a year of my life (as compared to Mel’s horrific five years).  And like her, with the use of meditation (and in my case, intense imagery and homeopathics), I got well as if it never happened.

And we also shared a reason why the EBV virus became activated in our bodies in the first place: STRESS.  For Mel, it appeared to have nothing to do with anything thyroid-related, but an extremely stressful helping-vocation that was eating her alive. For me, it was the stress of having to be where I didn’t want to be, feeling overtly powerless…and on top of being on the lousy Synthroid.

And for thyroid patients all over the world, including you, the risk of reactivation of the Epstein Barr Virus is a constant threat. It can result from one or more of the following biological stresses:

• being undiagnosed thanks to the inadequate TSH lab test
• being on a T4 medication like Synthroid, Levoxyl, Levothyroxine, Eltroxin, Oroxine, etc
• falling into low cortisol from adrenal fatigue
• having chronic side issues pulling your body down such as gluten intolerance or celiac, low ferritin, poor digestion, or making mistakes in your treatment

Even worse, add life’s stresses as icing on the cake, and you’re a sitting duck for the risk of reactivated EBV.

What is EBV? Epstein Barr Virus,  also called human herpesvirus 4 ( HHV-4) is an opportunistic virus that actually lies dormant in at least 95% of all adults over their 30′s. It’s what causes mononucleosis, aka “mono”, as a teenager,  but you don’t have to have had mono to carry the dormant virus. Wikipedia states that it also probably has a primary role in many autoimmune diseases, including ” dermatomyositis, systemic lupus erythematosus, rheumatoid arthritis, Sjogren’s syndrome, and multiple sclerosis.” i.e. this is one nasty virus!

Why do so many thyroid patients find themselves with it? Millions of thyroid patients live their lives compromised due to being on T4-only meds like Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, and other T4 med brands.  Additionally, patients find themselves with poorly functioning adrenals, poor digestion and other conditions related to a poor treatment–all adding to a lowered immune system, which allows the opportunistic EBV virus to take ahold, especially in the face of extreme or chronic life stress.

What are symptoms of a reactivated EBV? It can vary from patient-to-patient, but can include easy and excess fatigue, achiness, joint pain, all over body pain, swollen lymph nodes, slight fever, ringing in the ears, and a general I-don’t-feel-well. When my EBV antibodies were acute, I would be in bed for 2-3 days after pulling weeds for just twenty minutes while seated.  I couldn’t grocery shop; I couldn’t do housework. Nothing. Nada. I also had constant ringing in the ears and achiness.

How do I find out if I have it?? Ask your doctor to send you to a lab to be tested for it.   Or you can use Healthcheck USA–scroll down on the latter link to find the test. Put STTM10 in the form to get a discount.

How do I treat it?? It’s not easy. I personally benefitted from taking a prescribed anti-virus medication. Though that lessened my symptoms by 50%, it wasn’t enough. I then moved to homeopathic medications and some dedicated mental imagery to finally get rid of it, as well as lots of rest and the immune enhancing support of vitamins, minerals, supplements plus healthy strategies i.e. whatever it takes to nourish your immune system. Nourishing supplements include high dose Vit. C (2000 mg minimum),  Vit E as mixed tocopherals,  selenium (200 – 400 mcg), mushroom extracts, CoQ10, high dose B-vitamins, minerals plus plenty of healthy and raw foods.  And ultimately as a thyroid patient, being on a MUCH better hypothyroid treatment with natural desiccated thyroid is the key, besides treating one’s adrenal fatigue, gluten or digestive issues, low ferritin, and all other related conditions.

Bottom line, once you are adequately treating your thyroid problem (see the current Options for Thyroid Treatment), addressing potential adrenal fatigue, low ferritin, gluten issues, low B12, for example, and using good stress management in the face of pressures within your life, your risk of having a reactivation of the dormant EBV virus is very low.

(Monday April 5th Postscript to my blog post below: One of the patients interviewed by this reporter states the following: The report left the impression that we (desiccated thyroid users) are a teeny little group on the fringes of medicine, rather than a ground swell of well researched patients trying to improve our health (and every aspect of our lives) with rational, common sense alternatives. We are still voices crying in the wilderness, and ignored by the mainstream medical professionals. C’est la vie.)

Finally.

After years of near-complete silence by the mass media about the profound 60-year medical scandal of T4-only treatment like Synthroid, as well as lives changed due to natural desiccated thyroid, we have some progress.

A few weeks ago, I was contacted by health reporter Pauline Dakin of CBC (Canadian Broadcasting Corporation) Radio. She was preparing a report on thyroid treatment and desiccated thyroid, asking for names of Canadian patients and doctors who might speak of their own experiences. Among others, I got her in touch with Canadian thyroid patient Theresa Roberts, who has reminded me of this report.

And, Pauline Dakin’s report on desiccated thyroid will be presented TODAY, Easter Sunday, on CBC Radio One on “The World This Weekend” at 6:00 pm Eastern Time (5 pm Central, 4 pm Mountain and 3 pm Pacific). It’s a comprehensive 1/2 hour news program that airs nationally on weekend evenings and takes an in-depth look at current issues.

And even if you aren’t in Canada, you can listen to this program on CBC Radio One live at http://www.cbc.ca/worldthisweekend/ , or you can download the podcast (which may require free subscription).

HIGH FIVE to Pauline Dakin and the Canadian Broadcasting Corporation.

The 60-year use of T4-only medications like Synthroid, Levoxyl, Eltroxin and other brands has NOT worked for hundreds of millions worldwide, resulting in each patient’s amount and degree of lingering symptoms of hypothyroidism as well as the added misery of adrenal fatigue.

We have also been bandaided with anti-depressants, statins, pain meds, high blood pressure meds and more, all the while being told by our clueless doctors that we are schizophrenically ‘”normal” because the also-lousy TSH test says so.

Or, like my own mother, we have been subjected to Electric Shock Therapy because of depression caused by T4 meds and their inadequate treatment.  You can read about my mother here.

Stop the Thyroid Madness™!

P.S. Sign up for the “newsletter notification” of this blog–see right below the links to the left. Or you can use your RSS feed page.

I recently chatted with Sheila Turner, a thyroid patient advocate in the UK who runs the website Thyroid Patient Advocacy–United Kingdom.

And she has become absolutely disgusted at what is happening in the UK–disgusted enough to stop being polite and to ask direct and pointed questions on the home page of her TPA-UK website.

What spurred her tough new stand?  Says Sheila, “The RCP (Royal College of Physicians), BTA (British Thyroid Association) et al are doing everything they can to boycott all T3 containing products and their latest ‘Statement’ on the diagnosis and management of primary hypothyroidism is banning general practitioners from prescribing T3 at all.“.

And, explains Sheila, it’s gotten to the point where most any General Practitioner is completely afraid to prescribe T3 or any T3-containing product like natural desiccated thyroid for fear of being reported. “The ONLY people allowed to recommend that T3 be prescribed are “accredited endocrinologists”, says Sheila. (And how many patients have experienced how close minded Endo’s can be towards desiccated thyroid.)

And here are her brilliant, in-your-face questions with links, which are pertinent for ALL of us, whether in the UK or not:

1. WHY do the GMC, the RCP, the BTA et al. deliberately choose to ignore the scientific evidence that has been available for over 40 years ?
2. WHY are medical associations ignoring the 13% failure rate of T4-only therapy for the past 50 years? Why are patient’s complaints dismissed?
3. WHY has there been no correction to the RCP statement when there are patients who are counterexamples to the validity of T4-only therapy?
4. WHY is the confusion of two definitions for ‘hypothyroidism allowed to continue?
5. WHY are guideline authorship and concise guidance to good practice protocols ignored?
6. WHY are individual symptoms of hypothyroidism stated to be “non-specific” when Baisier found groups of these symptoms may be quite specific?
7. WHAT further investigations for non-thyroidal causes are recommended as relevant to the symptoms of hypothyroidism when pituitary and thyroid GLAND function tests are biochemically normal – Levels of fT3, rT3 and adrenal levels?
8. WHY are the studies by Das (2007) and Lewis (2008), which found that patients could be successfully treated with thyroid extract being ignored?
9. WHY is medicine ignoring false negative test results?
10. WHY do doctors refuse to explain and/or justify their decisions, thereby withholding information necessary for valid consent to treatment?
11. WHY does the NHS refuse to take steps to protect human rights when sufferers are put at risk through a disregard of the demand that patients should be treated with fairness, respect, equality, dignity and autonomy?
12. WHY are laboratory discrepancies in serum testing being ignored?

I appreciate the tough stand Sheila is taking. We HAVE to take a strong stand in light of the worldwide ignorance about 60 years of patient suffering on T4 meds like Synthroid, Eltroxin et al, about better treatment with natural desiccated thyroid and T3 products, and about the lousy TSH lab test!

In fact, in light of practically NO mass media attention to this huge worldwide thyroid treatment scandal, we have to shout it wherever we can and hope that some WISE reporter or media personality gets this and will shine a media light at the idiocy going on out there towards thyroid patients. Stop the Thyroid Madness!™