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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.

Sue’s remarkable and shocking story about cellulose as a filler in our thyroid meds

(This page has been updated to current date and time. Enjoy!)

I received in an email from Sue in Australia.

Sue’s son has complex difficulties with a diagnosis of sarcoidosis, an inflammation disease that can occur throughout your body. From the disease, says Sue, he was fairly emaciated, which is common with Sarcoidosis (emaciated means he was basically “skin and bones”).

He was also born without a thyroid. So he’s been on compounded natural desiccated thyroid–the way thyroid is made in Australia–and of course, the filler has been cellulose.

When she read from STTM (see here) about the problems with cellulose and the way it binds the desiccated thyroid–making the compounded thyroid less effective–she approached a biomedical doctor to have the filler changed to acidophillus as suggested. He instead suggested glycine powder. Glycine is a non-essential amino acid and neurotransmitter which helps with digestion, central nervous system health, besides create muscle tissue and convert glucose into energy.

And, says Sue, “the immediate reaction was startling as my son who had been suffering from emaciation for years with a diagnosis of sarcoidosis put on over a kilo in much needed weight in the space of little more than a week.” In fact, she now wonders if much of his problems has been related to his lack of thyroid, and the cellulose filler making the medication less effective, all along!

Says Sue, “His case is a complex one, having been born without a thyroid gland, but the removal of cellulose ( or the addition of glycine or both) have certainly heralded some exciting changes”.

She also added, “There must be more to this than meets the eye. I did have to reduce his thyroid extract dose as I’m assuming that the binding effect of the cellulose meant he was on a higher dose than necessary to get a reasonable result and/or perhaps glycine enhances absorbtion. I’m sorry there are still quite a few questions to be answered and the results of a  blood test in a few weeks time will be interesting. I’ll keep you updated.”

Bottom line: adding cellulose as a filler with desiccated thyroid has been a disaster, as patients discovered after both Armour by Forest Labs and Naturethroid by RLC Labs were reformulated in 2009 and early 2010, respectively.

One thing anyone can try is chewing up their Natural Desiccated Thyroid which can release the thyroid from the binding cellulose. You can also choose to use a mortar and pestle to pulverize the tablets, and add a touch of honey or sugar, which helps with digestion. There are some NDT’s which do not have cellulose. 

If you are on compounded desiccated thyroid, ask the pharmacist to change the filler to acidophilus. Or ask about Glycine (or L-Glycine) to see if it is good for your particular situation.

All good alternatives for thyroid treatment are found here.

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To all doctors and pharmacies: cellulose IS a problem with desiccated thyroid

(Though this post was originally written in 2010, it’s been updated to the current day and time, because it still applies!)

A patient 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 certain 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 in 2009 caused too many patients to see a return of their hypothyroid symptoms. Naturethroid has not escaped the same fate for some.

(There is also wonder if, after Activas bought out Forest in 2014 and patients then reported that Armour wasn’t working as well for them in 2015, if added cellulose was the problem. We’re not sure.(

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. In 2009, after Armour was reformulated with an increase of cellulose in the mix, a great deal of patients started to report problems, 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 for certain patients, it appears. And BRAVO to those compounding pharmacies who have listened and have used the beneficial probiotic acidophilus as a filler. We appreciate you.

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

 

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.

How to make reformulated Armour and Naturethroid work!

Screen Shot 2015-11-28 at 8.05.11 PMThis was written in 2010, but can apply when a pharmaceutical changes a tablet, such as has happened again to Armour in 2015.

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In case you are missing comments on my previous posts, there is a potential solution to the problems encountered with both the reformulated Armour by Forest Labs, and the reformulated Naturethroid by RLC.

Namely, by either crushing your tablet with a mortar and pestle, or chewing it up in little pieces, patients are starting to report far better symptom relief!! i.e., this process is probably breaking down the ridiculous coatings and cellulose and allowing your body better access to the desiccated thyroid within.

And if you just can’t stomach the pulverized pill method, add a touch of honey to the powder, and lick it all up.

Let us know how it works for you!

Want to see the newest Question & Answer page on STTM? Go here.

PREVIOUS BLOG POSTS:

To read my Editorial Response, go here (or if you are reading this on the blog, right below)
To read my informal survey on the new Armour, go here.
To read UK Sheila Turner’s Guest post on those who criticize self-treatment, go here.
10 reasons thyroid patients are frustrated, angry and sick, here.

Survey on patient experience on the NEW Armour–not a pretty picture

It’s been about a year since Armour desiccated thyroid, a very popular prescription natural thyroid product on the market for decades, was reformulated. Forest Labs stated there were two changes: the raising of cellulose, and the lowering of sucrose.

Why did they do this? It could be strongly related to the fact that in late 2007 through 2008, patients who used the 3 grain tablets reported they were suddenly and entirely ineffective. So, many of us surmise that Forest was attempting to “improve” (cough) their product.

Says one of those patients:  I had switched to the 3 grain tablet months before to save money and I used my pill cutter to cut it in half.  Then around November, my work pants were getting tight and I would come home tired, achy and weak. It didn’t take me long to figure out that Armour in the 3 grain was now like a sugar pill!

In the meantime, Forest brought out the newly formulated Armour, & patients who finished their old batch started the new batch. And since then, it appears a large body of patients have run as fast as they could to Naturethroid, or compounded, or T4/T3 or Erfa. The reason: a return of former hypo symptoms on the “new” Armour.

I have completed an informal survey with 24 individuals responding, and asked the following questions. After each question, I give a summary of the answers.

  1. How long of doing well occurred on the newly reformulated Armour before you started to notice that you weren’t doing well?
  2. Most answers are in the area of 2-3 months, with three saying a month, one 4 months, and three stating a few weeks. And comparing this to comments we’ve been seeing for the past year on patient groups, it’s common to feel good at first, but to crash within that 2-3 months.

  3. What clued you in that you weren’t doing well on the new Armour?
  4. The answers are all over the map: fatigue and exhaustion, hair loss, brain fog, weight gain, sleeping problems, constipation, achiness, depression, hormonal problems, moodiness, dry skin/elbows/thumbs and cracking skin, flaking fingernails, heart irregularity, forgetfulness. Five report skin breakouts similar to poison ivy.  Fatigue and hair loss were the most common answers.

  5. Did you try raising it? What were the results?
  6. The majority tried raising it, and results were: no results; barely made any difference: more energy but skin was a mess. The majority said nothing happened. Two doubled it with no significant results.  Two developed fast heart rate with no improvements elsewhere. One had to lower it because of a very low TSH. One stated she raised it to get her labs back up to where they were before…with little improvements.  And one said it made her too hot to continue raising it.

  7. Did you try adding T3 to it? What were the results?
  8. All said no. One said she tested here RT3 ratio and it was 11, which is bad.  One stated she asked her doctor for T3; he said no. I’d sure like to find someone who did add T3 who could tell us the results.

  9. Did you do anything else to try and make the reformulated Armour work, and did it help?
  10. All reported nothing helped enough.  Many stated their doctors tested for other problems, ranging from heavy metals, low iodine, B12–the latter helped one gal’s tingling. One stated her doc put her on Aprotocol for the digestive tract which helped the constipation but nothing else changed. One added compounded desiccated thyroid to her Armour—it didn’t help. One gal tried Thyro-care, which helped. But she and two others report getting a poison-ivy like skin rash on the new Armour.

Currently, we see newly diagnosed patients put on the new Armour, and veterans can’t help but wonder what will happen to them.

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On my April 17th blog post, read 10 reasons thyroid patients are still frustrated, angry and sick. That is followed by the April 19th blog post Should thyroid patients avoid self-treatment at all costs, with an interesting and strong Guest Post by Sheila Turner of TPA-UK and a good followup to the former 10 reasons post.

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