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Tongue-in-cheek yet sincere thankfulness from Thyroid Patients…and more

As the United States approaches Thanksgiving, it’s appropriate to offer our thanks as thyroid patients to the following:

THANKS go to the American Thyroid Association (ATA), who in their Nov. 10th email newsletter, had a NATURE-THROID desiccated thyroid ad right under their logo and gave us a great chuckle! Why? The ATA has always rigidly recommended T4-only medications and the TSH–both which have failed too many thyroid patients for sixty years. Loved your faux pas, ATA, in the name of making $$!! Are we going to see it again? Huh??

THANKS to Forest Labs, who though patients feel they ruined one of the oldest and best desiccated thyroid medications ever made when they reformulated it in 2009, gave thyroid patients the memory of a desiccated med far superior to press for from other pharmaceuticals in the future after the FDA gets their act together about the safety and efficacy of desiccated thyroid. (p.s. chew your Armour thoroughly before swallowing for better effectiveness, say patients)

THANKS to Erfa in Canada, who makes their own version of desiccated thyroid just like the old Armour, where we can do it sublingually and where it still has a touch of sugar to help with dissolution. Glory be to Erfa!

THANKS to the FDA, who had enough wisdom to allow thyroid patients to order Erfa desiccated thyroid from Canada–a far superior product than the lousy T4-only medications for a huge body of thyroid patients. We hope your wisdom continues.

THANKS to all the makers of important supplements–many which have played HUGE roles in the lives of thyroid patients trying to undo the damage done to us thanks to T4-only and the TSH lab test. They include high potency B-vitamins, selenium, minerals, sea salt, iodine, and so many more. We are behind you in the freedom to choose nutritional supplements without a doctor’s prescription.

THANKS to the growing body of doctors who have been listening to patient experience and email me of that fact. We bow to all of you who have LISTENED to the whole body of knowledge thyroid patients have learned, which is also Chapter 3 in the STTM book with more details.

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FULL BODY SCANS AT AIRPORTS: should thyroid patients be concerned?

If you are going to fly anywhere and are a thyroid patient, you may need to understand that you could be subjected to radiation in a full body scan. And since thyroid patients in various groups have expressed concern about the effect of radiation exposure on their own thyroids, this can be a concern.

Oh sure, John Pistole of the Transportation Security Administration says they keep us safe. And the FDA website is saying that these X-ray scanners pose “very low health risks.” But the FDA is also the agency who has always approved a certain kind of thyroid medication, T4-only, which has left millions of us with lingering hypothyroid symptoms for years, and which calls a medication which HAS worked for over 100 years as “unapproved”.

So, if you are going to fly anywhere while this controversial procedure continues, you might want to choose the intrusive pat-down instead, or look into a train.

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DO COSMETIC LASER DEVICES CAUSE THYROID PROBLEMS?

In the same vein as my comment above about radiation scans when you fly: I received an email from a gal who feels that a cosmetic laser device has not only injured her eyes, but may be the culprit in the fact that she now has hypothyroidism and a pituitary tumor. And she’s not alone, as others are wondering the same thing with support groups on the net. These laser devices are used to correct sun damage on your face, improve acne scars, improve rosacea, tighten skin, remove melasma spots, and even help with eyesight. She called herself and others with damage from these devices “modern day radium girls” . If you want to be more informed, research this on the net and decide for yourself.

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SEND THE STTM BOOK AS A CHRISTMAS PRESENT

The publishing company will do the work for you, sending a book as a holiday present for to a friend or loved one who needs to read what patients have learned. Included will be a holiday card with your name in it, or you can remain anonymous. Go here.

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HOW TO TACKLE A BAD COLD AND CONGESTION AS A THYROID PATIENT

A gal emailed me, asking if I knew of something that would help her terrible nasal congestion. She found out the hard way that using Afrin, a strong nasal spray, caused her thyroid to ache. I then recommended she look into a Neti Pot, which can do wonders to clear your compacted nose, and I faithfully use it if I do have congestion (which I did last week when I failed to take enough Vit. D at the onset of symptoms of an upper respiratory infection). Check it out here. And when you first try it, don’t panic. Let it do its miracle, because it really works!

COMMON QUESTIONS and ANSWERS are here.

HOW TO FIND A GOOD DOC is here.

WHERE TO TALK TO OTHER PATIENTS is here.

CURRENT OPTIONS FOR GOOD THYROID TREATMENT here.

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About Canada, 90% flawed medical research, and is Armour changing?

(Though this post was written in 2010, it’s been updated to the present day and time where needed. Enjoy!)

CANADA

I recently attended a lecture at a restorative medicine conference (kinda snuck in), and had a wonderful chat with a surgical nurse from Canada who is on Armour and didn’t even know about Erfa–the Canadian version of desiccated thyroid simply called “Thyroid”. She was thrilled to find out about it, but it was shocking to me that she didn’t know about a VERY good desiccated thyroid product right on her turf!

But even more concerning to me was being reminded that Canada has a severe shortage of doctors. Because that means it can be even harder for Canadians than Americans to find a good doctor when it comes to better thyroid treatment. It’s hard enough here: how it must be in Canada is chilling. And even if you do find one–because there are some there–the wait has to be long.

UPDATE: Erfa started to cause problems for patients, which I first reported about twice in 2014, and the most informative post is here. Even into 2016, some patients continued to have problems, but they were lessened.

ARE 90% OF ALL MEDICAL STUDIES and CLINICAL RESEARCH WRONG?

Yes, according to meta-researcher and influential scientist Dr. John Ioannidi, and which was outlined in the recent issue of The Atlantic by David H. Freedman. Freedman states: Much of what medical researchers conclude in their studies is misleading, exaggerated, or flat-out wrong.

AND DO THYROID PATIENTS EVER KNOW THIS TO BE TRUE!! How many studies are there that imply that T4-only medications work ever-so-brilliantly, yet our experience with T4-only has profoundly debunked that “research outcome”.

Patients have noted that much of what is achieved in research is to obtain money for those sponsoring the research, i.e via the sales of the product studied, like T4. Even Freedman states:

This array suggested a bigger, underlying dysfunction, and Ioannidis thought he knew what it was. “The studies were biased,” he says. “Sometimes they were overtly biased. Sometimes it was difficult to see the bias, but it was there.” Researchers headed into their studies wanting certain results–and, lo and behold, they were getting them. We think of the scientific process as being objective, rigorous, and even ruthless in separating out what is true from what we merely wish to be true, but in fact it’s easy to manipulate results, even unintentionally or unconsciously. “At every step in the process, there is room to distort results, a way to make a stronger claim or to select what is going to be concluded,” says Ioannidis. “There is an intellectual conflict of interest that pressures researchers to find whatever it is that is most likely to get them funded.”

Hooray for Ioannidi! Thyroid patients have royally suffered for over 60 years partly due to poor research outcomes favoring T4-only treatment, and we appreciate individuals like this man for exposing the truth! To read the entire brilliant article, go here.

IS ARMOUR CHANGING BACK…OR WHAT IS GOING ON?

Rumors often start on the patient groups, and I usually just note them, and do nothing. But one rumor which continues is that Armour tablets by Forest Labs seem to be back to the old formulation. One gal emailed me and said her bottle seemed to contain both the newly reformulated Armour (harder, unable to do sublingually) and the older version (softer, can be done sublingually. What’s that about?? It’s odd.

UPDATE: In 2014, Forest Labs was bought out by Activas, and in 2015, thyroid patients once again reported a return of symptoms and a change in the pills. Armour also tripled in price. Not everyone was experiencing the return of hypothyroid symptoms (perhaps they were still using the Forest made Armour), but enough were they many started to change to other brands. That continued into 2016. Even the tripling of price was enough for patients to say “NO MORE!” Read about it here. .

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Thyroid Tidbits that just might tickle your fancy, give you hope, or make you laugh in derision (2010)

A GOOD REPORT from 2010 ON THIS OVER-THE-COUNTER THYROID SUPPORT

A gal recently used the Contact Me form on STTM to ask if I’d ever compiled patient experiences on ThyroGold–a nonprescription, over the counter, desiccated thyroid formulated by Dr. John C. Lowe and made from the thyroids of New Zealand cows who are pasture-fed. I said no–haven’t heard yet from anyone on it long enough.

But just thirty minutes later, here comes an email from a gal who has been on it four months, feels very good with many noted improvements. She is so thankful, and stated STTM gave her the confidence to feel she could work with ThyroGold. And lo and behold, her TSH-worshipping, Synthroid-prescribing doctor is watching her progress, and pleased.

Update to the present: Always check all the ingredients in any OTC thyroid med, and stay in touch with your doctor. This is just information.

COCONUT OIL AND ALZHEIMERS

Many a thyroid patient have heard of the benefits of coconut oil, especially as a food product which can stimulate your metabolism.

But a Dr. Mary Newport discovered in 2008 that just 4 teaspoons a day of virgin coconut oil just might have the right ingredients–medium-chain triglycerides which produces ketones by the liver–to stop the onset or even reverse some of the damage caused by Alzheimer’s. She witnessed this in her own husband. You should read her story here, and more on the Coconut Ketones website here. Since my mother, and her father, both got Alzheimers by the time they were eighty, this especially interests me!

In fact, coconut oil just night have the same successful results with Parkinson’s disease, Huntington’s disease, multiple sclerosis and amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease), drug-resistant epilepsy, brittle type I diabetes, and type II (insulin-resistant) diabetes. WHOA!!

(But do work with knowledgeable doctor, please)

Says Dr. Newport:

Our cells can use ketone bodies as an alternative fuel when glucose is not available. Brain cells, specifically neurons, are very limited, more limited than other cells, in what kinds of fuel they can use to function and to stay alive. Normally, they require glucose (sugar), but they can also use ketone bodies. Humans do not normally have ketone bodies circulating and available to the brain unless they have been starving for a couple of days or longer, or are consuming a ketogenic (very low carbohydrate) diet, such as Atkins. In Alzheimer’s disease, the neurons in certain areas of the brain are unable to take in glucose due to insulin resistance and slowly die off, a process that appears to happen one or more decades before the symptoms become apparent. If these cells had access to ketone bodies, they could potentially stay alive and continue to function.

ARE ENDOCRINOLOGISTS FROM ANOTHER PLANET?

A patient on STTM’s Facebook page recently reported that since her HMO would only allow her to see an Endocrinologist, off she went to the appointment.

And what does her new Endo tell her? Ready? That her TSH was fine, low T3 & T4 meant nothing, and there is NO evidence that adrenal fatigue is real (in spite of the fact that when she tries to raise her Armour, her heart goes wacky–a sure sign of stressed adrenals). She concluded that there is “nothing like being lectured on things when you know more than they do.” She felt forced to keep her mouth shut by his reactions if she did try to teach him something, and just resigned to “agreeing with everything he said and left”.

And her summary of that Endo escapade? “My dose of Armour is right, makes no difference I’m fatigued, had to quit my job, leg swelling so bad I can hardly get around. None of that mattered. ONLY the TSH test.”

And unfortunately, her comment about knowing more than the doctor is very, very common now thanks to STTM and patient groups. All we can hope for are those doctors who are humble and open-minded to what we now KNOW to be true!

REMEMBER ME MENTIONING THE GAL WHO PUT THE STTM BUMPER STICKER ON HER HUSBAND’S CAR?

Well, he got followed into the Barber Shop this time by a male nurse! So now, he wants something to hand out to these folks who keep approaching him. haha. So she has made copies of the STTM FLYERS and he’ll have them in the car from now on. This is reaching people…one by one!

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

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

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

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

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

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

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

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

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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.

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