thyroid patients tags

In the daily emails I get from folks,  some make my heart ache. And a recent email just underscored to me how we still have a long way to go in changing the inane stupidity of the medical establishment.

Her email today was titled OMG, THANK YOU!!!!!!

She explains that for twenty years, she has been sick, fired doctors, had them fire her for being “uncooperative in my treatment”, and more. And today, after finding STTM, she wants to cry, laugh and “talk out loud to all those charlatans who call themselves doctors”.

And I completely identified with her. I remember those 20 years myself where I went from doctor to doctor to doctor, enduring dismissive attitudes, vain condescending deaf ears, clinical blindness, ignorance, lab worship, and a slew of tests that were either useless or extremely painful–all in the attempt to find out WHAT WAS WRONG WITH ME.

Today, after finding STTM, she exclaims: “the relief of finally being vindicated after all those years!”

She continued:  “Most of the time they didn’t even have enough integrity to admit they didn’t know…they would just look at the paperwork and say,”well, the lab work looks fine.” Then would come the implication that it was all in my head.”

She spent hours and hours of online research (boy does that sound familiar) and her breakthrough after too many years of poor doctors came with a single old school family doctor who ordered the cortisol test.  And finding the patient-to-patient STTM was the final victory.

I wish I had had something like STTM, once upon a time. But so be it. The kind of long term suffering I endured, as well as many others, is the reason STTM was compiled and created, and patiently sits there, waiting for each and all who are STILL in the same boat to find it.

She ended her email with “Thank you! Thank you! Thank you!” And all of us who have been there, and have finally found our sweet spot thanks to PATIENT WISDOM as outlined on STTM, say “You’re welcome”.

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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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.

Thyroid tidbit #1 COCONUT OIL: Thyroid patients continue to report that the daily use of Coconut Oil (extra virgin is good) caused an increase in metabolism and even weight loss in  somewho wanted the latter. How much daily? It varies from 2-4 T. but be careful, as too much can cause diarrhea. 

Thyroid tidbit #2 GRASS FED DESICCATED THYROID: Are you worried what the pigs were eating before the thyroids became desiccated?? If so, try Dr. Lowe’s Thyro-Gold, which is actually from cow who are pasture-fed. Then report back to STTM on the Contact Me page and tell us how it works for you as a treatment, or not work. I will compile information and report it here.

Thyroid tidbit #3 ALZHEIMERS DISEASE: Improving your thyroid function just may lessen your chance of getting dementia. But research has also found a Leptin connection: http://www.webmd.com/alzheimers/news/20091215/more-leptin-may-mean-less-alzheimers

Thyroid tidbit #4: ASHWAGANDHA: If you have sluggish adrenals and are on cortisol, adding the herb Ashwagandha can be an excellent and natural additional support for your adrenals. Even without adrenal fatigue, it’s also good in the face of excess emotional stress, and is an anti-inflammatory.

Thyroid tidbit #5 REVERSE T3–IS YOURS TOO HIGH? The body naturally converts T4 to RT3 as a way to clear out excess T4. But you can also make too much when your ferritin is too low, your adrenals are stressed, B12 is low, in the presence of diabetes, and other chronic issues. High levels of RT3 can cause a pounding heartrate, continued hypo, and just a feeling that you aren’t feeling great yet. To learn more, go here.

Thyroid tidbit #6 BI-POLAR: Have you been diagnosed with bi-polar disease? If so, you might want to do the right tests for hypothyroidism, since there can be a strong connection between the two, and you can either be undiagnosed thanks to the wrong test, or undertreated thanks to Synthroid, Levoxyl, Eltroxin or other T4-only medications. Read more here plus more detail in the STTM book.

Thyroid tidbit #7 GREEN POWDER and CHOCOLATE: Don’t like green veggies but want to be healthy? Look into the different varieties of “Green Powder” that you can stir into your favorite juice or water. Read the labels, tho, and avoid those with soy. Like chocolate?? They now make CHOCOLATE FLAVORED GREEN SUPERGREEN POWDERS and I am a huge fan. Just google what is all in caps before this.

Thyroid tidbit #8 YOUR GRANDMA: Thyroid function will naturally go downward in the elderly.That’s why grandma starts wearing that purple sweater in weather you are sweating in.  But putting those over 65 on T4-only thyroxine is not the answer, as a recent study showed.  That’s why YOU AND I are lucky to be on desiccated thyroid with its direct T3, or even those of you who are on T3 only.

Thyroid tidbit #9 EGGS ARE A BIT SCARY RIGHT NOW: Not necessarily for thyroid folks only, but you should be aware that with the recent recall of huge amounts of eggs in the US, there are reports of a four-fold increase in Salmonella Enteritidis infections since May 2010 because of eggs and health officials fear the worst may be yet to come. Why? Because the same eggs have been used in other products. Scroll down this page to see list of recalled eggs. P.S. if you get salmonella and are on cortisol for adrenal fatigue, you should discuss with your doctor about using OTC cortisol cream, since you may not be able to hold down the pills. 1/4 tsp equals 10 mg cortisol.

Thyroid tidbit #10 FLU SHOTS vs. VITAMIN D: Just when you are making progress treating your hypothyroidism and/or adrenal fatigue comes the season for the flu. And if you google the same same title of this tidbit, you’ll see numerous articles about the efficacy of taking Vit. D rather than the flu shots.  How much? General recommendation are 1000 IU’s daily at the minimum. Others point to more. Do your research.

A patient recently reported on Facebook that a particular large and well-known health center in Texas decided to make their own compounded natural desiccated thyroid for their hypothyroid patients…with cellulose.

Having read my blog posts about widespread negative patient experience with cellulose, she told the pharmacy that many of us have noticed distinct problems with the addition of cellulose in our desiccated thyroid medications–exactly why the newly formulated Armour caused too many patients to see a return of their hypothyroid symptoms. Naturethroid has not escaped the same fate for some.

When she asked if they could remove the cellulose, she received a firm and condescending “No” from the pharmacist, referring to cellulose as “a common ingredient in many medications and not a problem.”

Not a problem? Once again, patients are dismissed as if we couldn’t possibly know what works, and what doesn’t work, in our treatment and in our own bodies. A shameful reality. She left disappointed. 

What is cellulose? Cellulose is the most common organic substance found on our planet–a fiber abundantly found in plants and trees, and most especially in cotton.

Where is cellulose used? You wear it and you write on it! You eat it when you consume celery, potatoes, or mushrooms. It’s used to stabilize and thicken processed foods, and may be found in many cheeses, dry milk, puddings, and more. And since it’s difficult to find anyone allergic to wood, it’s been a common ingredient in medications, used as a filler.

So where’s the problem for thyroid patients?

1. Unlike the happy cows in their pastures chewing their cuds, human stomachs  have a limited ability to break cellulose down. Cellulose is a fiber. And what does fiber do? It “binds”. It binds to the desiccated thyroid that has gone down with it.  i.e. the life-changing effects of desiccated thyroid are clearly dampened by the presence of cellulose. Our “experience” has revealed it all across the globe since Armour was reformulated with an increase of cellulose in the mix.  i.e. we have witnessed a massive return of hypothyroid symptoms on the newly formulated Armour, and to some degree, on Naturethroid, whether the latter switched to microcrystalline cellulose or not (as compared to the larger celled methylcellulose).
2. Hypothyroid patients do not digest well. As one of many complications of hypothyroidism,  especially due to the inadequate treatment of T4-only medications and poor diagnosis from the TSH lab test,  low stomach acid and poor digestion is COMMON in hypothyroid patients.  So when you add cellulose to the mix, you are further damning thyroid patients.
3. Though not specific to just thyroid patients, we are not too comfortable with finding out that cellulose can collect in our lungs, as revealed in pubmed articles here and here.  (Thanks to thyroid patient Danny for alerting me to this.)

Bottom line, desiccated thyroid is a quality and superior treatment medication which has changed the lives ten-fold for thyroid patients around the world.

But cellulose and desiccated thyroid DO NOT MIX. And BRAVO to those compounding pharmacies who have listened and have used the beneficial probiotic acidophilus as a filler. We appreciate you.

P.S. I absolutely loved this comment made by another patient on Facebook when we were discussing the grief of taking our last pre-formulated Armour: Would love to get my hands on some old Armour again….those were the days my friends…

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Want to know your options for better thyroid treatment?? Go here.

Need help finding a good doctor? Go here.

Think desiccated thyroid didn’t work for you?? Go here.

See common Questions and Answers here.