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.

(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.

HAVE LOW MAGNESIUM LEVELS AND SYMPTOMS? Do you have a hard time raising any of your mineral levels?

I have been working to raise my miserably low RBC (red blood cell) magnesium levels for a good year. And in spite of a strong commitment to my magnesium supplementation as well as oil, I continued to have typical low-magnesium symptoms–most especially lower leg cramping after hiking or heavy duty activity. Why was that?  I think I may have discovered one contributing factor, and this may apply to you.  It’s called high OXALATE food consumption.

Oxalate is an “organic acidic salt compound” commonly found in foods of plant origin. It’s also produced in your body by the metabolism of glyoxylic acid or ascorbic acid (vitamin C).  And it is normally excreted out of your body via urine, and sometimes the bowels.

But it turns out if you consistently eat a LOT of food containing high levels of oxalates, on top of what your body naturally produces, your body will have excessive levels. This may be exactly what happened to me this year, also causing chronic hives (scratch~scratch~scratch). The latter pushed me to do research, and voila, I realized I had consumed far too many high-oxalate foods (which in turn produced excessive histamine). And my eyes popped out when I read this:

“oxalates strongly bind to minerals and vice versa (e.g., calcium, magnesium, zinc and potassium), and reduces the absorption of your minerals as they both come out via your urine.”

It’s a negative love affair for your cellular mineral levels!!

What are foods which are the highest in oxalates? In alphabetical order, they include:

almonds, amaranth, black beans, brazil nuts, beets, blackberries, buckwheat, carob chips, carrots, cashew nuts, cannellini beans, celery, chocolate, corn meal, dried apricots, cooked tomatoes, great northern beans, green peppers, hazelnuts, marshmallow root, milk thistle, navy beans, oil of oregano, okra, peanuts, pecans, pine nuts, pink beans, pinto beans, potato chips, potato flour, rice bran, rhubarb, sesame seeds and tahini, slippery elm bark, all soy, spinach, star fruit, sweet potatoes, teff (flour and whole grain), quinoa (whole grain), white bean flour, and yucca powder.

And what was I eating daily as I was working on the final updating of the revised STTM book this year? Cocoa-covered almonds! Almonds are considered a very-high-oxalate food, as is cocoa.  That was on top of the slivered almonds in my morning yogurt, as well as my consumption of pecans, spinach, and okra. I also drink iced tea daily, which can have higher levels of oxalates. And many times, I grabbed small amounts of frozen sugar-free carob chips every few hours. ~~blush~~

I am currently on a low oxalate diet (besides a great herbal blend four times a day to counter the itchiness and histamines).  And I am curious that by lowering oxalates, I just may finally be able to get my magnesium levels up and far faster.  We’ll see. To see a good blog post and list of oxalate foods (high and low), called Roo’s Clues, go here.

And for more to the oxalate story, including its connection to autism, leaky gut, depression, kidney stones, yeast overgrowth and arthritis, read this.  B6 is also crucial in lowering oxalates.

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UK thyroid patients are clapping at the latest article which appeared in the July 3rd “The Mail”, a UK based, Sunday only magazine. It’s titled  “For Twelve Years I was a victim of The Great Thyroid Scandal” by Matthew Barbour. You can read its entirety here.

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WHEN YOUR HYPOTHYROID SPOUSE OR LOVED ONE IS RUINING YOUR MARRIAGE or RELATIONSHIP:

Over the years, I’ve gotten several emails, and mostly from men, who are emotionally suffering.  But it’s not because they themselves are hypothyroid. It’s because their spouse/girlfriend is, and many of the latter seem to be in the throes of adrenal fatigue and low cortisol, as well.

The correspondents all seem to love their spouses dearly. But their spouses are defensive, over-reactive, paranoid, depressed and/or reclusive—all typical symptoms of having low cortisol. Depression is especially a problem even for those who just have undiagnosed or T4-only treated hypothyroidism.  And most all of those who email me are facing extremely unhappy relationships at the least, and pending divorces at the worst, even while still loving their spouses and wanting to stay married or connected.

If this fits you,  there is a brand new group you can join called Hypothyroid Spouses.   This is NOT just for men. If you are a women in relationship with a man who is like the above, you are welcome, too.

Note that you will need to very specific when you ask to join as to why you think you need to be in this group. This is a moderated and private support group, and is NOT for anyone but those in a relationship with a challenging hypothyroid and/or adrenal spouse.

ARE YOU ON CYTOMEL?

In reality, your local pharmacy needs to contact Pfizer Canada about getting re-stocked.  Says Mare, “The pharmacy’s inaccurate data caused me a great deal of angst this weekend as I was now totally out of the only thing (Cytomel) that’s even remotely made a bit of difference and now they were telling me I couldn’t get it anymore (do we patients always have to do everything ourselves??!!!)”

***Have you had any problems filling your T3? Comment on this blog post and tell us your experience.

WHY WOULD ANYONE BE ON T3-ONLY?? Did you know that if you have too high or too low cortisol levels, and/or low ferritin/low iron, there’s a good chance you may need to be on T3-only for awhile?  Yes, when you have ongoing chronic issues as a thyroid patient, your body will respond by converting the T4 you have to excess Reverse T3.  And excess RT3 will hog-and-clog the very cell receptors that would be receiving T3. Thus, you become hypo all over again.  You can read more about it here. But if you want even more good detail about T3, how this active thyroid hormone helps you,  the causes of RT3, and how to dose T3-only meds, get the Revised STTM book. It’s VERY worth it.

***What brands of T3 you have tried,  what works for you, and what hasn’t worked as well?? Comment on this blog post.

THE CONTINUING SAGA OF DR. SKINNER IN THE UK: If you aren’t aware of the incredibly shocking story of beloved Dr. Gordon Skinner in the UK—a man who dared to prescribe thyroid treatment in lieu of a “normal” TSH lab result (which is a lab test that informed thyroid patient worldwide know is completely bogus)—you can read my 2006 blog post about him here, followed by the 2007 post here.  Also, Sheila of TPA-UK gives detailed information here.

And everyone should know that his General Medical Council (GMC) hearing is coming up:  July 28th and 29th, plus August 1st, 2nd and 3rd.  This is to assess whether further action is needed after his 3 years of conditional practice are now up (as of late last year).  Says a strong supporter of Dr. Skinner (and there are MANY): “Please  let people know that their support is extremely valuable. Dr Skinner has asked for the hearing to be public and the GMC should accommodate everyone.”

***Are you in the UK? Keep us informed by commenting below.

HIP HOP MISSY ELLIOTT HAD RAI FOR HER GRAVES DISEASE: How many informed thyroid patients groan when they hear news like this concerning the use of RAI (radioactive iodine)! Thyroid patients worldwide bemoan the use of Radioactive Iodine treatment because of its potential for immense side effects. And all over the net, we read that’s just what was done to Missy Elliott in her battle with Graves disease aka hyperthyroidism.  See the People Magazine article here.

Says the Atomic Women website:

Rheumatoid arthritis is also an autoimmune disease. But, fortunately, limbs are not being amputated nor radiated.

Diabetes mellitus is also an autoimmune disease. And, fortunately, the pancreas is not being removed or radiated.

What is the point of irradiating and killing thyroid glands, which are fundamental for life?

We, as thyroid patients worldwide, wish the best for Missy. And we hope that if she is like many who eventually become hypothyroid, she will discover and learn from Stop the Thyroid Madness!

***What was your experience with RAI? Post side effects? Let us know by commenting on this blog post!

YEEHAW!!

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

But the reaction to it wasn’t quiet!

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

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

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

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

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

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

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

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

THE STTM BOOK IN OTHER LANGUAGES

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

KINDLE and E-BOOKS

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

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

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.

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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

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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 there are other countries I have felt were similar to my own as far as being modern, forward-thinking, and intelligent. The United Kingdom is one.

But there is one area in the UK that is as close to the Dark Ages as it gets: the treatment of all forms and degrees of hypothyroidism.

Because of the British Thyroid Association (BTA) and the Royal College of Physicians (RCP) ‘guidance’ on the Diagnosis and Management of Primary Hypothyroidism, most UK doctors refuse to prescribe any form of  T3, whether adding synthetic T3 to one’s T4, or using natural desiccated thyroid, either because they have fallen in line like ducks in a row, or they fear for their job.

Why? Because “overwhelming evidence supports the use of Thyroxine (T4) alone in the treatment of hypothyroidism, and we do not recommend the prescribing of additional Triiodothyronine (T3) in any presently available formulation, including natural thyroid extract, as it is inconsistent with normal physiology, has not been scientifically proven to be of any benefit to patients, and may be harmful”.

Anybody puking yet??

And, says thyroid patient advocate Sheila Turner of TPA-UK, “never has the RCP, BTA  produced any of the ‘overwhelming evidence’ they claim as supporting the use of T4-only, even though they have been asked to do so on numerous occasions. Overwhelming evidence supports the use of synthetic T4/T3 and natural thyroid extract.”

And don’t think it won’t happen where YOU live. Stupidity can abound.

What to do about it?? Answer a short questionnaire, created by Sheila and TPA-UK, which is for those with symptoms of hypothyroidism when treated with T4-only, who then tried a T3 thyroid hormone product with success. “The results of this questionnaire will enable us to create the first ‘World-wide Register of Counterexamples to Levothyroxine (T4) – only therapy’”, underscores Sheila. “The objective is to draw attention to the dire need for an urgent re-examination of the existing protocol for the diagnosis and management of the symptoms of hypothyroidism.”

Don’t wait until stupidity and narrow-mindedness comes to where you live, as it also has in the country of Columbia, where Cynomel (T3) was retired more than 10 years now.  Give this a voice NOW to head it off at the pass.

P.S. While you are at it, sign up with Dr. Skinner’s World Thyroid Register.

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The STTM patient-to-patient website needs your help! I had to move the website to a far larger server in order to handle the immense amount of visits this site gets. And a larger server means higher yearly costs to host it. I can’t do it alone, as my money tree was killed by pine beetles and my husband won’t tell me what his Swiss Bank Account number is. So your donations can help keep Stop the Thyroid Madness up and running for yourself and other patients just like you! If you appreciate STTM, please go here to make a donation to the hosting fees. I do not get it! The hosting company does.

The large size STTM t-shirts are now gone. If you can wear an X-large or XX-large and want to spread the word to others, go here. And the bumper stickers REALLY catch attention!! I am stopped in parking lots because of mine. YOU could change someone’s life!

The Contact Me page on STTM hasn’t been working for weeks. And I didn’t know it.  But it’s fixed now.  Remember: it’s not to ask questions about your personal treatment. Those need to go here.

The STTM book helps in your doctor’s office. Have brain fog? Many patients are telling me they take the book right in the office, bookmarked. I can’t promise how your doctor will respond, but it’s been positive for most when a book is referred to right in front of the doc. I hope it helps you, too.  P.S. Only books ordered directly from the publishing company get a bookmark of updated info. That’s also true if you have a book sent to a relative or friend.

Today, it has been announced by the GMC (General Medical Council) of the UK that Dr. Sarah Myhill is now straitjacketed. She is forbidden to prescribe medications, is bound by other medical practice restrictions (see the details on the Support Dr. Myhill Facebook page), and most egregiously, has been ordered to remove parts of her website (thanks to Lethal Lee for pointing this out), some of which you will not see two weeks after I have posted this.

Why remove parts of her website? Because by daring to educate the public, especially if that education goes against “standard medical practice”, it seems to be deemed “harmful”. In other words, you as a patient are not allowed to discover, or are too “vulnerable to get it,  that there just might be a TOTALLY different story to the medical practice you are subjected to.

For example, here is part of a page on Dr. Myhill’s website which is completely correct, informative, and wise, and I want to see her words stay sharp and viewable, especially for thyroid patients. It fits our experience. The page is titled “Test results and what they mean”. If you want to be informed, read all the below.

http://www.drmyhill.co.uk/wiki/Category:Test_results_and_what_they_mean

Only too often people come to me with tests results which have not been properly interpreted. The reasons why this happens are as follows:

• Test results are flagged up and considered to be abnormal if they are outside the reference range, but one’s individual normal range is not the same as the population reference range. This is a particular problem in the interpretation of thyroid tests.
• Reference ranges for tests change. Reference ranges are based on random bloods from the population. The trouble is anyone following a Western lifestyle is not evolutionarily correct and many not normal! So labs change their reference ranges to adjust for this. So, for example, the normal range of a gamma GT used to be up to 36, it is now up to 70. This enzyme is induced by alcohol and prescription drugs and because so many people drink alcohol it is considered normal to run a high gamma GT! The lab I use has a normal reference range for thyroid hormone T4 of 12-22pmol/l but some labs give ranges of 5.6-17pmol/l!
• Tests are often incomplete. So someone with a thyroid stimulating hormone (TSH) within reference range will be told they have no thyroid problem, when in fact one also needs a free T4 and a free T3 together with a clinical history to assess if there is a thyroid problem.
• Drug companies influence normal ranges. The normal range for cholesterol has come down steadily since statins have been such big money earners for Big Pharma.
• Incorrect breakdown of test results. Many people are prescribed statins on the basis of a single cholesterol level. This is faulty for many reas ons – firstly one needs a breakdown of good (HDL) and bad (LDL) cholesterol to get the ratio. If the ratio is not favourable then this is likely to be a symptom of arterial disease. Cholesterol lowering drugs are often irrelevant. See Cholesterol – the common causes of raised levels
• Results close to the limits of normal may be abnormal for that person. For example, a high normal bilirubin may mean Gilbert’s syndrome – this means someone is a poor detoxifier. A high mean corpuscular volume (MCV) could point to hypothyroidism, B12 or folic acid deficiency.
• Normal tests do not mean no pathology. A normal ECG at rest does not mean there is no heart disease, yet many people are told this is the case.
• Tests may ask the wrong question. So many people come to me with severe fatigue syndromes having been told nothing is wrong because all the tests are normal! But ask the right question and do Mitochondrial Function Profile and you find gross abnormalities with respect to energy supply at the cellular level.
• Tests for poisonings are particularly misleading. For years doctors have promoted levels of cholinesterase as a good test for organophosphate poisoning. It is a rotten test and misses the majority of cases! Much better would be Fat biopsy for pesticides or Volatile Organic Compounds

GOOD FOR YOU, Dr. Sarah Myhill!

I and many other thyroid patients, struggling to fight the inane thyroid treatment protocols, have a strong feeling that though this progressive doctor may be restricted as a physician, we’re going to hear a lot more good information from the courageous and wise Sarah Myhill.

(Note: this is a long post, but will be worth every penny if you read it all!)

When STTM first put out its shingle in December of 2005 (with most of what you see today going up in ’06 and ’07 with continual additions),  my goal with this site was simple: to educate thyroid patients.

And as I saw it, by educating patients on what we had been learning, patients could in turn, take that information into their doctors offices and push for change. And it’s been working, slowly. We now have more doctors than ever before who know about desiccated thyroid and are willing to prescribe it, even if they are the minority. STTM has a page on how to try finding one of those good docs.

But as I wrote about this fact in my previous post, certain patients can still find themselves frustrated, angry and sick because of doctors. It’s not a pretty picture for some.

I am lucky, as I’ve always managed to have a fair doctor to work with, without complicated issues. But a lot of patients aren’t as lucky.  They either can’t find a doctor to treat them correctly after trying repeatedly, or they simply can’t afford to keep driving to find a good doc (with no promises that they will get the good doc they desperately need anyway). As a result, many thyroid patients report being forced to self-treat.

Even though STTM was never created as a self-treatment site, I am aware that some patients use it that way.  And I can never condemn them. Granted, a few who make their own choice to self-treat can run into problems, most especially from undiscovered or undiagnosed low ferritin or low cortisol. But it’s a choice they seem to make out of desperation.

The following  post is by  Guest Blog poster and UK’s thyroid patient advocate Sheila Turner of TPA-UK.  These are her courageous thoughts concerning self-treatment, and her angst against anyone who tells patients not to do so.  Overall, UK patients have a very tough situation in the UK with doctors, but so do the vast majority of patients around the world, as well as US patients. See what you think…

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It’s not uncommon to be told as a suffering and debilitated thyroid patient to never self-diagnose, never self-treat, never self-monitor.

And in an ideal world, we could take those admonitions on. But we are not living in an ideal world.

You might as well tell everybody with ill health to put up with whatever they are suffering and leave their health in the safe hands of our ‘wonderful’ doctors whom we can trust implicitly.  Sadly, many doctors have little (or no) education in the workings of the thyroid system.

Or, you might just try touring the country until you find one who will help. Well, if you have the energy and the money to do that, it could take a heck of a long time before finding such a good doctor – indeed, IF you ever find such a doctor.

I run a very successful Internet Thyroid Support group, plus web site for thyroid disease, and I have seen at first hand (and experienced it myself) the nightmare of having to put up with the terrible suffering caused by Doctors.

In the UK, for example, it is organizations such as the Royal College of Physicians and the British Thyroid Association who have terrified NHS doctors so much that they now no longer prescribe any T3 hormone containing products, neither natural nor synthetic, for fear of being reported to the GMC  regulatory body with the threat of losing their career and livelihood.

One comment I hear from those who condemn self-treatment is the problem of over-medicating. In reality, it is the reckless prohibition of all T3-containing drugs that causes cardiac arrhythmia and risk of  sudden death -  which would amount to at least manslaughter, and might even constitute murder if the outcome is strictly foreseeable - which it is. It is NOT patients who should be criticized. They have been driven to buying prescription medicines for thyroid and adrenal insufficiency. Criticizing self-treatment is an outrageous claim and one that the medical regulators would no doubt be delighted to hear. Seems that not only are doctors becoming sorely afraid of the Regulators, those who condemn self-treatment are also falling into the same trap.

The “basic premise” that underlies my own purpose and advocacy is to help those being left to suffer because the medical regulators and government are refusing to give a proper diagnosis – and for those who do get a diagnosis, giving them levothyroxine sodium-only as a thyroid hormone replacement.

Whenever a new member comes to TPA, we encourage them to read, read and read again and to look at the information in our FILES section which is there for all to see. We tell them about the associated conditions that go along with being hypothyroid such as low adrenal reserve, systemic candidiasis, mercury poisoning and ask them to request blood tests from their doctor to see if their levels are low in the reference range for ferritin, vitamin B12, vitamin D3, magnesium, folate, copper and zinc. We have information on the reasons they need to check these and if any of these are a problem, make sure they are aware of just how essential it is that they eliminate these conditions, one by one, before starting thyroid hormone replacement – such conditions are NOT automatically checked by NHS doctors – and they put their patients at great risk by automatically prescribing levothyroxine.

We all know of the serious ramifications for those patients who are not being given a correct diagnosis or treatment. However, it is the endocrinologists and medical regulators who are guilty of causing much of the unnecessary suffering, not those patients who are driven to self diagnose, self treat and self monitor, as those who criticize self-treatment would have us believe.

Mainstream doctors do not appear to be even aware of the many common and often undiagnosed symptoms and dangerous consequences of low thyroid. These include: serious mental problems, seizures, heart disease, diabetes including misdiagnosis and complications, constipation resulting in colon cancer, all female problems (due to high amounts of dangerous forms of oestrogen), including: tumours, fibroids, ovarian cysts, PMS, endometriosis, breast cancer, miscarriage, heavy periods and cramps, bladder problems leading to infections, anaemia, elevated CPK, elevated creatinine, elevated transaminases, hypercapnia, hyperlipidemia, hypoglycemia, hyponatremia, hypoxia, leukopenia, respiratory acidosis and others….

If sufferers of the symptoms are NOT getting a proper diagnosis and the thyroid hormone replacement that would give them back their life and health through mainstream doctors, how on earth would you recommend they do this, apart from scouring the country to find a doctor elsewhere who would help them, or recommending they get enough money together to see a private thyroid specialist. Do you REALLY have such complete faith in the medical profession to know that we should ALL leave our thyroid health in their hands, sit back and do nothing – and probably just wait to die? How can you recommend that they do NOT buy prescription medications and should not self-medicate, self treat or self monitor when there is NO other option left open to them.

If those who criticize self-treatment have personally heard from “DOZENS” of people who have followed the “increase my own dose of natural thyroid” self medication approach, then yes, something is seriously wrong with the `teachings’ or advocacy of such groups. Education should be encouraged by all, and if members do not understand the reasons why they need to take great care, such explanations should be given in such a way that they understand.

I rarely hear of members ending up in Emergency Rooms battling potentially fatal heart arrhythmia’s, atrial fibrillation, and/or ending up in worse health than before, including long-term and permanent heart damage through self-treatment. I have heard of many NHS patients being admitted to A and E, who had been treated (or not) by mainstream doctors who refused them the correct therapy their symptoms needed.

In good conscience, I do recommend that thyroid patients self-diagnose, self-medicate and self-treat if they are being left to suffer, because organizations such as the RCP, BTA TSH reference range is so huge that they will never go outside of it. This reference range is 0.5 to 10.0 in the UK – probably the widest in the world. Then, we have to put up with the fact that the only thyroid function test that will be done is the TSH – and doctors will not test Free T4 in a lot of cases, never mind free T3 level. Also, NHS Pathology labs refuse to test free T3 even if the doctor has specifically requested it. So, many of us will NEVER get a proper diagnosis – being left to suffer their unnecessary symptoms for years and become wheelchair/bed bound in many cases, having to leave paid employment.

Such patients are told they have a `functional somatoform disorder’ when their TFT’s are normal, when they continue to complain of symptoms – or – those who are lucky enough to get a diagnosis, who are treated with levothyroxine only yet still complain of debilitating symptoms are told also “you have a functional somatoform disorder” or “your symptoms are non-specific” .

What mainstream doctors do not recognize is that thyroid function tests ONLY test the amount of thyroid hormone being secreted by the thyroid gland.  TFT’s (more correctly should be called Thyroid GLAND function tests”, do not test to show whether there is peripheral resistance to the thyroid hormones at the cellular level. This is not due to a lack of thyroid hormones secreted by the gland. Blood tests do NOT detect Type 2 hypothyroidism. Type 2 is usually inherited. However, environmental toxins may also cause or exacerbate the problem. The pervasiveness of Type 2 has yet to be recognized by mainstream medicine, but already is in epidemic proportions. I think many sufferers of the symptoms of hypothyroidism know very much more than their medical practitioners. I do know which road I would like to follow – that is to find an excellent doctor I could trust implicitly, but sadly, the ONLY road many of us have to follow to get back normal health is the one where we have to self medicate.

Please do NOT blame patients who are driven to self diagnose and medicate as being the reason why the US government, or any other government for that matter, are now eliminating the availability of natural thyroid and synthetic T3. You are being sucked into believing what they want you to believe.

Levothyroxine is a synthetic medication that can be patented, and has made billions of pounds for the Big Pharma and for the regulators of hypothyroid guidelines. Natural thyroid products cannot be patented. Should doctors prescribe either synthetic or natural T3, the majority of sufferers of the symptoms of hypothyroidism would regain their normal health – Big Pharma would suffer.

You should perhaps read the book “Dirty Medicine” by Martin J Walker if you have not already read it. Those who criticize self-treatment appear to be accusing all those suffering symptoms of hypothyroidism who have been driven to buying medications without prescription and self treating as making it worse for the rest of those suffering. It is NOT them who are abusing T3. If a T3 hormone containing product was properly prescribed, there would be NO NEED FOR PATIENTS TO BE SELF MEDICATING.

Self medicating, whatever drug we are taking, whether using a T3 hormone containing product or not, is always risky and patients must be fully educated in its use. However, self medicating with any drug runs risks, but I would rather self medicate with the chance of getting my health back than leaving my health in the hands of totally incompetent doctors – incompetent because the teachers in our medical schools are incompetent.

For those who are being left to die, without the treatment that will make them well, do-it-yourself medication is the only option left open to them. Would you really deny them this?  Leaving patients without the thyroid hormone they need is appalling and one of the reasons TPA is campaigning to bring about changes in the diagnosing and treatment of the symptoms of hypothyroidism.

It can be appreciated to say to work with the right doctor, but what do you recommend if patients cannot find the `right’ doctor?? Perhaps you should all come over here to the UK and help those sufferers in finding the right solution and offer to help them help to find a “good doctor”.

Sadly, there are never any solutions given or alternative to self diagnosing, self-treating or self-monitoring, other than to “find a good doctor”. This does not help Internet thyroid support forum members.

Sheila
http://www.tpa-uk.org.uk/