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Month: September 2010

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

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

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

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

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

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

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

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

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A clinical trial in progress to investigate T3 in the treatment of fibromyalgia

Oh the heels of my last blog post (see right below this if you are reading right on the site) comes something VERY interesting, and which thyroid-patients-in-the-know have already known about for a good ten years!

Namely, Dr. Ian Carroll, MD, MS, and Dr. Jarred Younger, PhD of the Stanford Systems Neuroscience and Pain Lab are currently enrolling patients for a clinical trial investigating T3 for the treatment of fibromyalgia. (Fibromyalgia is a chronic syndrome which causes widespread musculoskeletal pain and debilitating fatigue, also aching, twitching, burn sensation, joint issues).

Of course, patients who switched to desiccated thyroid the past ten years (or have used synthetic T3 in their treatment) already KNOW the truth from experience (which is usually always pooh-poohed by clinical-trial-worshipping, clinical-presentation-ignoring, medical professionals.).

Namely, fibromyalgia is usually the result of undiagnosed hypothyroidism (due to the inane TSH lab test) and undertreated hypothyroidism (due to the worst medication ever thrust on patients, aka T4-only, or Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, etc.) i.e. you need direct T3, the most powerful thyroid hormone, to adequately treated hypothyroidism.

i.e. we’re all kinda going duhhhhhhhh here.

But, if a clinical trial is needed to prove what we already know (and so has Dr. John C. Lowe known it for many years), it’ll be just one more underscore of the truth. Go to the following to read more and/or enroll:  http://snapl.stanford.edu/t3/

P.S. the Bobbsey Twins of the failure of the TSH labs test and treating with T4-only:  Fibromyalgia and Chronic Fatigue Syndrome.

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Does your inner ear itch?? Got an email from a gal who was on Synthroid for 7 years, and for the last 5, had torturous deep inner ear itching. And guess what?? It went away just two days after switching to desiccated thyroid. Yup, another long and pathetic symptom of a poor treatment. (If you still have it on desiccated thyroid, see what mistakes in your treatment you need to identify and change, which is also Chapter 11 in the STTM book with a little more details added.)

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Yippee!! Direct Labs is the third lab facility to partner with STTM in offering the kind of labs that patients who frequent STTM know are important in their quest to feel better and educate their doctors.  Unfortunately, they don’t offer saliva like the other two, which are Healthcheck USA and MyMedLab, but they have all the other labs you may be interested in. You can view them by going to STTM’s Recommended Labwork page.

12 replies

Two doctors who are listening, and an interesting documentary

This post below was originally written in 2010, and the same holds true today–that if you can find a doctor who is positive about Stop the Thyroid Madness, you at least are a step ahead of most doctors.

BUT….be prepared that you will still have to guide most any doctor, which is why you need to learn from the books and website. Read! Study! Learn!! If a doctor can’t be guided, you’ve got a dud. 

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Just within the last few weeks, I’ve been informed by patients that their doctor has outright recommended the patient-to-patient Stop the Thyroid Madness website or book in their newsletter, and agreed with what patients have learned. That is huge!

This also underscores the difference YOU can make in your doctors office, even when you’re not sure you did.  You wouldn’t have even seen these kind of newsletters two years ago, and it means we’ve come a long way, baby. Though many doctors still lag behind, the following two doctors deserve our praise for LISTENING:

1) Allan Lieberman, M.D. Dr. Lieberman is the Medical Director of The Center for Occupational and Environmental Medicine in North Charleston, South Carolina. He has practiced medicine for 51 years, specializing for the last 33 years in Environmental Medicine and Toxicology.

He wrote about and recommended the STTM book in his August 19th newsletter and after a patient had given him the STTM book. You can read what he wrote here.

2) David Edelberg, M. D. is board certified in Internal Medicine and founder of Whole Health Chicago in Illinois. He is nationally recognized as one of the pioneers of integrative medicine which combines conventional medicine with alternative therapies.

 He wrote about STTM in his Sept. 14th newsletter, and it was written after a particular patient spoke “loud and clear” against a bias she felt he had, and strongly recommended STTM to him. You can read what he wrote here.

NEED MORE DOCTOR IDEAS??

Go here: http://stopthethyroidmadness.com/how-to-find-a-good-doc

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DO YOU QUALIFY TO BE IN THIS DOCUMENTARY??

I have been notified by a production company that they are working on a documentary about people who have reversed symptoms of Alzheimer’s and dementia such as memory loss and cognition problems through natural means.

But they are also interested in interviewing thyroid patients who have had severe memory and cognitive issues before their thyroid was corrected, and which went away afterwards. The key here is “severe”, then the use of natural desiccated thyroid.

i.e. If you are someone who had severe brain fog which went away with natural desiccated thyroid, you can contact them at ddvideoproductions@gmail.com or call either Patricia Tamowski at 914-582-3194 or Alan Scott Douglas at 914-482-8208.  They will then email you full details of the documentary to see if they would like to participate. This would be a good place to mention your patient site Stop the Thyroid Madness.

UPDATE: I never found out if this documentary was completed. But, there is a book out you should read with breaking information to counter Alzheimers. It’s called The End of Alzheimer’s: The First Program to Prevent and Reverse Cognitive Decline by Dale Bredesen–information which might apply to any form of dementia or memory loss….

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The story of one little bumper sticker about depression and a life potentially changed!

Reading and responding to my daily emails is a huge job that takes a lot of time. My 92 year old mother-in-law thinks I’m obsessed with my computer. ha!  If only she knew.  But some of those emails stand out in my mind.

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.