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The Good, the Bad and the Ugly: 2012 in perspective for thyroid patients worldwide

2012 represented my tenth year as an activist, which has given me great perspective of where we are today as to compared to where we were ten years ago. And it’s huge. We had NO Stop the Thyroid Madness compilation of successful patient experiences to learn from and very few patient groups. We’ve come a long way, baby and the fight for better thyroid treatment and wisdom continues!

To summarize, Clint Eastwood couldn’t have said it better as to the mix of what 2012 gave us as informed thyroid patients!

THE GOOD: 

  • Armour returns to a softer tablet  After Forest Labs disastrous reformulation of Armour natural desiccated thyroid in 2009, which made the tablets harder and caused a return of our hypothyroid symptoms, we started to see Armour tablets becoming softer again in mid-2012. And that meant we could choose to do Armour sublingually once again. In the meantime, this disaster allowed many patients to discover NP Thyroid by Acella, which has turned out to be a great product.
  • More doctors are getting it! I probably see this in a more widespread way than individual patients do thanks to all the emails I get, but it’s clear that a growing body of doctors are finally understanding the efficacy of natural desiccated thyroid and the idiocy of the TSH lab test in diagnosing and dosing NDT. Sure, the field of Endocrinology is still as backwards as it gets, as are many other doctors, but others are listening here or there. (But do note that even the best doctors aren’t caught up in other areas, so become informed and expect to guide them as to patient experience! STTM book helps you do that.)
  • STTM book now in German and Swedish  I was proud and excited to offer these two translations to help spread the word to those who may not speak English.
  • Study being done comparing NDT with Synthroid Walter Reed National Military Medical Center in Bethesda, Maryland is doing a study, and seeking participants from the military, to compare the results of natural desiccated thyroid (which they call Natural Desiccated Extract or NDE, and will be Armour) and T4-only aka levothyroxine (and will be the infamous Synthroid). But there is a clear bad…..see below 
  • Wichita, Kansas says no to Fluoride in their water. Considering that many of us suspect that the fluoride we are constantly exposed to could explain the huge influx of thyroid disease, this is extremely good news and we can only hope that other cities get this smart.
  • Thyroid Change In an attempt to unite all thyroid websites, leaders and focuses came this new website, Thyroid Change.

THE BAD:

  •  John C. Lowe dies  It was a terrible shock to lose this helpful medical professional in January due to the effects of a head injury the previous year. And his websites went with him for awhile due to probate. He will be sorely missed, as he was a champion for the use of NDT and understood SO much about better thyroid care.
  • The passing of Edna Kyrie  Edna of the UK worked hard on the website Thyroid History, aka Thyroid Research, compiling everything she could find pertaining to thyroid research and science, even while dealing with the effects of MS (multiple sclerosis).
  • US now confiscates medications if they come into the country  In July, Obama passed a bill called the FDA Safety and Innovation Act (S. 3187) which allows the government to destroy a package of personally imported drugs at their point of entry to the United States…even if some patients feel they need them when they can’t find any doctor wise enough to prescribe NDT, or enough NDT thanks to the poor use of the TSH lab test. And several patients have already had this happen to them.
  • Walter Reed National Military Medical Center study will sadly be using the TSH  i.e. though it looks exciting to see a study comparing NDT to Synthroid, they are going “to keep TSH in normal range” (which for the majority can mean they are still hypothyroid) and aren’t even testing the FREE T3, just using the total T3, total T4, free T4, T3 resin uptake, sex hormone binding globulin (SHBG), and a lipid panel.  Give me a break….
THE UGLY:

Good thyroid patient discussion groups here.

Things we have learned here.

What’s new on STTM here.

What your Road to Recovery can look like here.

The revised STTM book here.

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Jennifer Livingston: this goes even deeper than bullying. You are on the wrong thyroid medication!

Jennifer Livingston, a mother of three adorable daughters, is a morning anchor at WKBT-TV in La Cross, Wisconsin and a very pretty one at that. And she received an email from a male viewer which stated that her excess weight was not a good role model for young girls. Jennifer’s supportive husband Mike Thompson, who is an evening anchor on the same station and strongly supports his wife, posted the critical email on his Facebook page:

“It’s unusual that I see your morning show, but I did so for a very short time today. I was surprised indeed to witness that your physical condition hasn’t improved for many years. Surely you don’t consider yourself a suitable example for this community’s young people, girls in particular. Obesity is one of the worst choices a person can make and one of the most dangerous habits to maintain. I leave you this note hoping that you’ll reconsider your responsibility as a local public personality to present and promote a healthy lifestyle.”

Livingston followed this up with a bold four-minute rebuttal to the personal attack, emphasizing the cruelty of judging someone based on their exterior, especially considering she is very aware of her weight problem, and has worked hard to deal with it for years. She also referred to the bullying nature of the note. With October being National Anti-Bullying Month, this incidence hit a chord.

Jennifer’s famous brother, actor Ron Livingston, also expressed support for his sister.

BUT JENNIFER, YOUR STORY GOES EVEN FARTHER AND DEEPER THAN YOU KNOW, AND YOU COULD CHANGE MANY LIVES OF YOUR LISTENERS AND BEYOND. YOU MAY BE A VICTIM OF A 50-YEAR THYROID TREATMENT SCANDAL!

You mentioned being on a thyroid medication, and you may be a victim of the same 50+ year thyroid treatment scandal that millions of overweight women have been part of : 1) the use of the TSH lab test, which can be “normal” for years even though the patient has clear hypothyroidism, or 2) the use of Synthroid or any other T4-only medication to treat the hypothyroid condition, which leaves patients with their own degree and kind of continuing hypothyroidism.  And weight gain, plus difficulty losing it, is a common symptom of continued hypothyroidism for all too many  

Neither the TSH lab test or T4-only meds like Synthroid work well, exclaim frustrated, or sick, or overweight, or angry patients all over the world!

Additionally, the longer patients stay on this lousy medication, the higher the risk of having low levels of Vitamin D, Iron, B12 and other important nutrients. More than 50% of T4-only treated patients fall into adrenal fatigue, aka low cortisol, due to the failure to get enough T3, the active thyroid hormone, into the cells of their adrenals. i.e. T4 is a storage hormone meant to convert to T3, but the body is not meant to live for conversion alone!  T4 is only one of FIVE hormones secreted by the thyroid.

And it gets worse….

Many folks replied to the WKTB article about this incident. And one person stated in their post:  “…..GIVE UP A FEW BURGERS AND CUT THE CHEESE. START MOVING JENNIFER!”

Jennifer, do you know how MANY thyroid patients with a weight problem have heard this well-meaning but terrible refrain from friends, loved ones, strangers and even some clueless doctors?? Oh sure, we know that eating healthy is important. Many already eat healthy! But continued hypothyroidism keeps our bodies like that of a snail. It affects our body temperatures (it stays much lower), how our muscles work and our blood circulates (true fatigue here), how we digest food (food tends to stay in our stomach longer), and how we eliminate waste (we tend to be constipated or slow eliminators). When we try to exercise, we end up in bed from the excess fatigue of continued hypothyroidism.

 It’s not a pretty picture, Jennifer….and it’s just as bad as bullying for millions!

Learn from other thyroid patients: //www.stopthethyroidmadness.com/things-we-have-learned

Here’s my story:  //www.stopthethyroidmadness.com/my-story

Here are others stories: //www.stopthethyroidmadness.com/stories-of-others

Here are the crazy things we have to listen to from our doctors: //www.stopthethyroidmadness.com/give-me-a-break

Here’s why Synthroid doesn’t work for all too many: //www.stopthethyroidmadness.com/t4-only-meds-dont-work

Here’s why the TSH lab test sucks: //www.stopthethyroidmadness.com/tsh-why-its-useless

Here are symptoms which went away with Natural Desiccated Thyroid: //www.stopthethyroidmadness.com/long-and-pathetic

Here are many good thyroid patient groups: //www.stopthethyroidmadness.com/talk-to-others

HELP US STOP THE THYROID MADNESS, JENNIFER, OF WHICH YOU MAY BE ONE MORE VICTIM! 

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The UK’s GMC is at it again—challenging Dr. Skinner! Your help is needed.

What in the world is up with the medical system in the United Kingdom??

UK thyroid patients report it’s almost impossible to be on natural desiccated thyroid–a treatment which simply gives a thyroid patient back the T4, T3, T2, T1 and calcitonin that a healthy thyroid would be making.

And now, the General Medical Council has decided to once again challenge a doctor who DARED to treat symptoms with a lab result in range, even though the patient clearly has hypothyroid symptoms. Thyroid patients are INFORMED patients, and we know the difference between what a man-made fallible lab range shows, and how we feel, especially the lousy use of the TSH lab test.

I first wrote about the Circus of Shame concerning the challenge Dr. Skinner’s fitness to practice here, which was 2006.  Finally, five years later in 2011, you can read about Skinner being exonerated of all charges here! It was exciting.  Sheila of TPA-UK outlines concerns with this entire fiasco here.

But it appears the General Medical Council wants to keep playing this broken record. They now have 5 more charges against him–i.e. the same old stuff about treating within the reference range.  MANY patients have been treated with their lab test in range and report their lives changed!!

Says Sheila Turner of TPA-UK stated today, Feb. 18th, “Dr Skinner has 3 working days to get his defence together, he was away last week, and came back yesterday to find a big bundle in his post from the General Medical Council. The following is what I posted to all of my members yesterday. We have heard nothing more from the GMC or from Gordon’s legal team as we are now into the weekend, so will have to wait until Monday morning. As much as I know I have written below. See the last day of the GMC hearing and the Panel’s decision at that time. It just beggars belief. here http://www.tpa-uk.org.uk/skinner_hearing_transcripts2.php .”

YOU CAN HELP!!  Use the following to email short messages of support about being treated successfully with a lab result within the so-called normal range:  IOPTeam@gmc-uk.org with Dr. Skinner’s name and reference, C1-462487326 by this Tues 21st. The hearing (with hardly any notice) is on Wednesday 22nd Feb.

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Who has the vision and courage of Dr. Lowe…and a message from Acella about delays

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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T3 to heal adrenals, Selenium, liver–all important info for thyroid patients!

Though this post was written in 2012, it has been updated to the current day and time and it still applicable. Enjoy!

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 about himself 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.

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. He calls this The Circadian T3 Method, aka the CT3M.

  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 Addison’s Disease, 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. You can read more here on STTM.

UPDATE: many patients have reported that though the CT3M did wonders bringing up the morning cortisol, it didn’t help afternoon cortisol at all, and for some, didn’t help noon’s low cortisol. Yes, there are some who feel it’s helped all day, but also a large body who said it only helped morning. So we concluded that though it’s great for that low morning, you may have to use other supports for other low cortisol times. Also, the CT3M is excellent to help get off HC! Many are off in a month or less!

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

Check out what thyroid patient Cheryl Alvey has put together about selenium. This is a masterful page!

WHY THYROID PATIENTS NEED HEALTHY LIVER FUNCTION

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.

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.

**Come over to the STTM Facebook page and “Like” it for daily inspiration and information!

23 replies