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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.

The shackling and gagging of Dr. Sarah Myhill of the UK

(4-30: Paula has informed me that you can download Dr. Myhill’s complete website to your computer via this zip file: www.drmyhill.co.uk.zip – Windows Live )

Today, it has been announced by the GMC (General Medical Council) of the UK that Dr. Sarah Myhill is now straitjacketed. She is forbidden to prescribe medications, is bound by other medical practice restrictions (see the details on the Support Dr. Myhill Facebook page), and most egregiously, has been ordered to remove parts of her website (thanks to Lethal Lee for pointing this out), some of which you will not see two weeks after I have posted this.

Why remove parts of her website? Because by daring to educate the public, especially if that education goes against “standard medical practice”, it seems to be deemed “harmful”. In other words, you as a patient are not allowed to discover, or are too “vulnerable to get it, that there just might be a TOTALLY different story to the medical practice you are subjected to.

For example, here is part of a page on Dr. Myhill’s website which is completely correct, informative, and wise, and I want to see her words stay sharp and viewable, especially for thyroid patients. It fits our experience. The page is titled “Test results and what they mean”. If you want to be informed, read all the below.

http://www.drmyhill.co.uk/wiki/Category:Test_results_and_what_they_mean

Only too often people come to me with tests results which have not been properly interpreted. The reasons why this happens are as follows:

  • Test results are flagged up and considered to be abnormal if they are outside the reference range, but one’s individual normal range is not the same as the population reference range. This is a particular problem in the interpretation of thyroid tests.
  • Reference ranges for tests change. Reference ranges are based on random bloods from the population. The trouble is anyone following a Western lifestyle is not evolutionarily correct and many not normal! So labs change their reference ranges to adjust for this. So, for example, the normal range of a gamma GT used to be up to 36, it is now up to 70. This enzyme is induced by alcohol and prescription drugs and because so many people drink alcohol it is considered normal to run a high gamma GT! The lab I use has a normal reference range for thyroid hormone T4 of 12-22pmol/l but some labs give ranges of 5.6-17pmol/l!
  • Tests are often incomplete. So someone with a thyroid stimulating hormone (TSH) within reference range will be told they have no thyroid problem, when in fact one also needs a free T4 and a free T3 together with a clinical history to assess if there is a thyroid problem.
  • Drug companies influence normal ranges. The normal range for cholesterol has come down steadily since statins have been such big money earners for Big Pharma.
  • Incorrect breakdown of test results. Many people are prescribed statins on the basis of a single cholesterol level. This is faulty for many reas ons – firstly one needs a breakdown of good (HDL) and bad (LDL) cholesterol to get the ratio. If the ratio is not favourable then this is likely to be a symptom of arterial disease. Cholesterol lowering drugs are often irrelevant. See Cholesterol – the common causes of raised levels
  • Results close to the limits of normal may be abnormal for that person. For example, a high normal bilirubin may mean Gilbert’s syndrome – this means someone is a poor detoxifier. A high mean corpuscular volume (MCV) could point to hypothyroidism, B12 or folic acid deficiency.
  • Normal tests do not mean no pathology. A normal ECG at rest does not mean there is no heart disease, yet many people are told this is the case.
  • Tests may ask the wrong question. So many people come to me with severe fatigue syndromes having been told nothing is wrong because all the tests are normal! But ask the right question and do Mitochondrial Function Profile and you find gross abnormalities with respect to energy supply at the cellular level.
  • Tests for poisonings are particularly misleading. For years doctors have promoted levels of cholinesterase as a good test for organophosphate poisoning. It is a rotten test and misses the majority of cases! Much better would be Fat biopsy for pesticides or Volatile Organic Compounds

GOOD FOR YOU, Dr. Sarah Myhill!

I and many other thyroid patients, struggling to fight the inane thyroid treatment protocols, have a strong feeling that though this progressive doctor may be restricted as a physician, we’re going to hear a lot more good information from the courageous and wise Sarah Myhill.

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.

An editorial response from Thyroid Patient Activist Janie Bowthorpe

I am pleased to note that Mary Shomon of about.com, who in her blog post on Thursday, April 22, 2010, has not only softened her wording about self-treatment by hypothyroid patients, but has also written expressively concerning surrounding issues. These are also issues which I presented in two blog posts earlier this week concerning the immense problem with doctors as expressed by patients, and self-treatment.

Good for Mary!

As witnessed by Sheila Turner’s excellent editorial towards those who criticize self-treatment, as well as angst expressed by many patients toward those who criticize, self-treatment is an important issue and can’t be diluted down as simply “self-destructive” in our current medical climate.

The following are differences in how this is viewed, though, with one common thought:

  • Is self-treatment one of the “most controversial” issues with thyroid patients? The answer is “only to those who make it so”. Far more troubling to thyroid patients is a medical establishment which worships a medication which has left millions undertreated, and which makes a pituitary hormone lab called the TSH as if it’s from God Almighty. Equally as troubling to patients are doctors whom they report as condescending, close-minded, robotic, and/or ignorant about issues that keep thyroid patients sick–low ferritin, adrenal fatigue, and more. Self-treatment is only the symptom of a much larger, more controversial problem.
  • Does self-treatment have “obvious drawbacks” for thyroid patients who feel forced to do it? The answer is “yes”, but no different and probably far less than the “obvious drawbacks” patients face with clueless doctors. The comments on my blog posts are bloated with patients who have been left sick, or made sicker, by one doctor, after another doctor, after one more. It’s not a pretty picture.
  • Is there a “risk of undertreatment” for thyroid patients who self-treat? Yes, but probably far less than the huge number of patients who report being left “undertreated” by doctors who are blind to the problems of T4, or doctors who remain clueless about the inadequacy of treating by the TSH.
  • Is the “greatest concern” about self-treatment the problem of being “over-medicated”? You betcha. But in the vast majority of these unfortunate cases with patients who choose to self-treat, the problem is undiagnosed or undertreated low cortisol and/or low ferritin, which results in thyroid hormones pooling in the blood and creating hyper-like symptoms. This is a risk for self-treatment.
  • Have “dozens of thyroid patients” ended up in emergency rooms due to over-medication? “Dozens” is speculation. It may be more realistic to state that “some”, yes, have stated this unfortunate outcome when they made the choice. But research and comment all over the internet shows anyone that hundreds of thousands of all patients can end up in the emergency room due to poor doctoral decisions, or bad reactions to pharmaceutical medications which doctors love to prescribe. Ending up in an emergency room is not solely connected to self-treatment.
  • Do “patients face many major obstacles that prevent them from getting accurate and effective thyroid diagnosis and treatment?” Yes! That is where Mary is in agreement with me with her six excellent points, including the tragic situation in the UK. And here are 10 reasons patients are frustrated, angry and sick.
  • Has one negative journal article about someone who self-treated “resulted in desiccated thyroid getting greater scrutiny by the FDA?” The answer can easily be: no worse than the body of patients who were made fearful that the FDA was banning desiccated thyroid, and who followed a strong campaign to contact the FDA about desiccated thyroid. I was also personally told by two pharmaceutical representatives that this action to contact the FDA made the pharms very uncomfortable and put too much attention on desiccated thyroid. Time will tell, but it’s not helpful to blame anything.
  • Does “actively promoting self-medication” with natural desiccated thyroid “work against thyroid patient interests”. The answer to this loaded question resides in who you ask. Whether “actively promoted” or simply “read about”, there seems to be a body of patients who report that finding out about desiccated thyroid, and feeling forced to self-treat because of not finding any doctor to help them, was one of the best decisions they ever made.

And to the last comment above, and since there have been “implications”, I want to underscore (and ad nauseum) that the patient-to-patient Stop the Thyroid Madness was not created as a self-treatment site, nor does it “actively promote” it. STTM is a site with a goal to educate patients who can, in turn, take that information into their doctors offices and push for change. And it’s been working, one doctor at a time, as witnessed by patients who report those doctors on patient groups, and by emails I get from some of those doctors.

But it’s also clear that those who self-medicate may be using STTM, as well as many other websites and books out there by doctors, advocates and non-professionals alike, to help them. So at least there is education out there to help those who choose this, even if none was created for that purpose.

Summary

There are important differences in opinion, and much more to the story as I outlined above.

But the bottom line is this: for up to 60 years, hundreds of millions of thyroid patients around the world have been subjected to

  1. a medication called thyroxine which has left a heap of lingering hypothyroid symptoms,
  2. a new debilitating condition like adrenal fatigue,
  3. a lab test (TSH) which has delayed diagnosis for years or kept patients undertreated, and
  4. too many doctors who aren’t up to speed about most any of this, and have left patients frustrated, angry and still sick.

And all the above is a far worse scenario which only pushes some patients to self-treat as a side-effect. But if you aren’t totally wiped out financially and emotionally in trying to find an informed doc, two suggestions: https://stopthethyroidmadness.com/how-to-find-a-good-doc as well as posting your city/state in the subject line of patient groups here: https://stopthethyroidmadness.com/talk-to-others

P.S. Please note that you will never see this blog, or this website, knowingly allow non-professional, negative, nasty, false, abusive and/or profound slander about a colleague, as has been done elsewhere. 🙁


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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