thyroid Archives - Page 3 of 13 - Stop The Thyroid Madness Skip to content

Tag: thyroid

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.

****************************************************

** Have you Like the STTM FACEBOOK PAGE? It gives you daily information, tips, and inspiration. 🙂

** Thank you!! A hearty thank you goes to those who have contributed to the hosting fees for STTM–a patient-to-patient educational site! I can’t do it alone, so you are VERY appreciated. And if you would like to contribute to the hosting fees (which I do not get: the host server does), go here.  Stop the Thyroid Madness is YOUR site.

** Vitamin and mineral deficiencies:  It’s common for thyroid patients to be low in iron/ferritin, Vit. D, magnesium, potassium and more. Have you checked your levels lately?


17 replies

God bless an electrical engineer: why the TSH lab test needs to be suppressed!

I always know that when I get an email from Dr. John C. Lowe, it’s going to contain excellent information. And he didn’t let me down.

Dr. Lowe is Editor-in-Chief of Thyroid Science, an “open-access journal for truth in thyroid science and and thyroid clinical practice”.  And in the recent issue, there is a remarkable and precise TSH (Thyroid Stimulating Hormone) hypothesis by none other than a brilliant UK  electrical and electronics engineer, Mr. Peter Warmingham.  In fact, his hypothesis about the TSH lab result when treating one’s hypothyroidism exactly corresponds to the successful experience of thyroid patients all over the world.

To quote Dr. Lowe in his introduction about Warmingham’s paper (FYI: “exogenous” refers to the thyroid hormone you give yourself;  “endogenous” refers to what happens naturally in your body):

Mr. Warmingham’s hypothesis is straightforward: When a hypothyroid patient (whose circulating pool of thyroid hormone is too low) begins taking exogenous thyroid hormone, a negative feedback system reduces the pituitary gland’s output of TSH. This decreases the thyroid gland’s output of endogenous thyroid hormone, and despite the patient’s exogenous thyroid hormone’s contribution to his or her total circulating thyroid pool, that pool does not increase–not until the TSH is suppressed and the thyroid gland is contributing no more thyroid hormone to the total circulating pool. At that point, adding more exogenous thyroid hormone will finally increase the circulating pool of thyroid hormone. The increase must occur for thyroid hormone therapy to be effective. The patient’s suppressed TSH, then, does not indicate that the patient is over-treated with thyroid hormone; instead, it indicates that the patient’s low total thyroid hormone pool will finally rise to potentially adequate levels.

In other words, when your doctor says no to an increase in your desiccated thyroid simply because your TSH lab result is, or would become, below the so-called normal range (and in the presence of continuing symptoms or a low temperature), he will usually end up keeping you hypothyroid! i.e. making an ink spot on a piece of paper more important than clinical presentation is just one reason why the current thyroid patient revolution represented by Stop the Thyroid Madness exists!

You can read Warmington’s entire paper here on Dr. Lowe’s site. For further information on the fallacy of the TSH lab test, go here or read Chapter 4, aka Thyroid Stimulating Hooey, in your copy of the STTM book for more detail.

P.S. Dr. Lowe is probably right on when he says he expects criticism to flow for the fact that Warmington is not an Endocrinologist and “how in the world can anybody but an Endo make a logical hypothesis about the TSH lab test”. Read more on Lowe’s thoughts about this here.   But enlightened thyroid patients around the world are collectively shouting “GOD BLESS AN ELECTRICAL ENGINEER!”

14 replies

If you have Hashimoto’s, you may want to become aware of Hashimoto’s Encephalopathy

Screen Shot 2015-07-06 at 8.25.26 AM

Though this post first came up in 2010, it has been updated to the present day and time. 

*****************

I got an email from a sweet thyroid friend and advocate, Bev, aka Thyro-butterfly, whom I’ve known for several years. And Bev has had two relapsing and unnerving bouts with a condition that’s not common, and  under-diagnosed: Hashimoto’s Encephalopathy (HE).

She stated “I think everyone who has Hashimoto’s disease should know that this exists because the symptoms are so similar to severe neurological problems. And the treatment, though not curable, is relatively easy to do….”

What is Hashimoto’s Encephalopathy (HE)?

Hashimoto’s Encephalopathy is a rare neuroendocrine disorder which was termed and recognized in 1966 and has a strong connection to the autoimmune thyroid disease called Hashimotos–a form of Thyroiditis. i.e.  just as antibodies attack your thyroid, there are rare cases where it can attack and destroy your brain cells. Having a high thyroid peroxidase (TPO) antibodies lab result is common with Hashimoto’s Encephalopathy, and can accompany high anti-thyroglobulin antibodies, as well.

Researchers have also coined other names for this condition:

  • Steroid Responsive Encephalopathy Associated with Thyroiditis (SREAT)
  • Encephalopathy Associated with Autoimmune Thyroid Disease (EAATD)
  • Non-vasculitic Autoimmune Inflammatory Meningoencephalitis (NAIM)
  • Autoimmune Encephalopathy (AE)

The U.S. National Institutes of Health’s Office of Rare Diseases Research refers to it as Hashimoto’s Encephalitis.

Wikipedia states:

Up to 2005 there were almost 200 published case reports of this disease. Between 1990 and 2000, 43 cases were published. Since that time, research has expanded and numerous cases are being reported by scientists around the world, suggesting that this rare condition is likely to have been significantly undiagnosed in the past. Over 100 scientific articles on Hashimoto’s Encephalopathy were published between 2000 and 2013.[2]

What are symptoms that can make one suspicious of having HE?

Those with HE can share many symptoms, or can have unique symptoms from each other. They include:

  • tremors
  • seizures
  • jerking
  • language difficulty, whether speaking, writing or reading
  • confusion
  • limited attention span or concentration
  • poor memory and retention
  • dementia diagnosis
  • disorientation
  • restlessness
  • convulsions
  • symptoms similar to a stroke
  • poor coordination (walking, fingers, hands, etc)
  • partial right-sided paralysis
  • headaches
  • fatigue
  • sleep problems
  • psychosis
  • coma

Women are more prone to HE than men.

What tests might my doctor do to confirm this?

Studies underscore the need to first exclude “other toxic, metabolic and infectious causes of encephalopathy (disorder of the brain) with neuro-imaging and CSF examination”.  The latter is examining one’s cerebrospinal fluid. But when there are quite high levels of antithyroid antibodies like TPO (thyroid peroxidase), that alone can be a strong enough clue to diagnose Hashimoto’s Encephalopathy. High TPO antibodies can accompany high levels of thyroglobulin antibodies, as well.

What kind of doctor might help me the most?

Many of the published articles on HE have been done by Neurologists from the Mayo Clinic.  If you live in Arizona, Florida or Minnesota, here’s a list of Neurologists associated with Mayo: http://www.mayoclinic.org/departments-centers/neurology/sections/doctors/drc-20117077

Here’s a list of Neurologists by states in the US: http://www.healthgrades.com/neurology-directory

Around the world, you can click on the area you live, then see a list of Neurologists: http://www.wfneurology.org/member-societies

How is HE treated?

Luckily, treatment is fairly straightforward and dramatic against symptoms: steroid use, which is why it’s also termed “steroid-responsive encephalopathy associated with autoimmune thyroiditis (SREAT)”.

Says Elaine Moore in her article titled Hashimotos encephalopathy: A Treatable Form of Dementia:

Patients with SREAT show a good response to corticosteroids such as prednisone and related immunosuppressants because of the ability of these medications to reduce thyroid antibody production and reduce inflammation. Researchers in India report a case of SREAT that did not respond to corticosteroids but showed a very favorable response to plasma exchange, a technique used to remove circulating antibodies.” Doses of steroid can vary from individual to individual, but some do well on 4-6 mg cortisol for a few days. Others may need more.  Remission is the norm for most. You’ll have to watch for relapses. Since misdiagnosis is common, it’s important to talk to your doctor about this potential disorder, testing, and treatment if you have Hashi’s and symptoms similar to any of the above.

Wiki also states: Initial treatment is usually with oral prednisone (50—150 mg/day) or high dose IV methylprednisolone (1 g/day) for 3—7 days.

Thanks to Bev for bringing this issue back up.

 

 

70 replies

Question: What do most doctors & lemon cars have in common?

Answer: Most are duds.

On Monday, I had an enjoyable experience with an exception to the lemon cliche:  I was a guest on Dr. Steven F. Hotze’s radio program Health and Wellness Solutions, broadcast live from Houston, Texas.  You can listen to a recording of our conversation here on the lower right under the heading Dr. Hotze Radio in orange.

The commercials were like flies, zeroing in often and irritatingly. But we managed to briefly mention both Stop the Thyroid Madness as well as the Hotze Health & Wellness Center.

And two things struck me about our friendly chat: first, Hotze mentioned that he started prescribing natural desiccated thyroid in the 1990’s, far ahead of most doctors even today!  If only we knew.  And second, he made a quick mention of how disappointing most doctors are for patients, referring to the STTM page called Give Me A Break. If you haven’t seen it, or it’s been awhile, you will find it both hilarious and completely sad.

And it all made me ponder how in 2010, eight years after I personally found the life changing desiccated thyroid,  there are still so many family practitioners and Endocrinologists keeping thyroid patients sick all over the world, even if they mean well, even if they are good people, even if they do other diagnoses and treatments correctly.

So on one hand, it’s reality that progress is slow. But on the other hand, the thyroid treatment wall of ignorance is slowly tumbling down about better thyroid treatment thanks to patients who read about it and carry that information into their doctors offices.

So perhaps over time, the lemons who practice bad thyroid treatment will become less and less prominent in the name of enlightenment, wisdom and LISTENING to patients.

P.S. And by way, if you are lucky enough to have found one of those docs who prescribe desiccated thyroid, remember that NO doctor is all-knowing. YOU live in your own body, and can have your OWN wisdom and knowledge. So expect the relationship be a partnership. And if you can’t get that partnership, find a better doctor.

Want to read more about natural desiccated thyroid? Go here.   To read my own story, go here.

7 replies

Gee golly bazooka: guess who started a conversation with me?

SumoWrestlersYesterday, I was meandering through a small biking/river runners store, exchanging a vest I got my son for Christmas that turned out to be too large, and looking intently for a replacement gift he’d like.

The only other shopper left—a tall, dark and handsome young man. And almost as quickly, he re-entered,  approached me, and asked if that was my car out there.

“My car?” I replied. “Yes, why?”

“I’m curious about the sticker you have on your back window,” he stated with a friendly but curious smile.

The sticker is of Calvin peeing on the word of a particular T4-only medication.  I give these away free if someone requests it with their current order of the STTM book.  And this was not the first time I’ve been asked about that attention-getting sticker.

So I proceeded to tell him that I’m a Thyroid Patient Activist, owner of Stop the Thyroid Madness, about the history of T4, how lousy many patients have reported doing on it for nearly 60 years with their own variety and intensity of lingering hypo symptoms, and how much better natural desiccated thyroid has been for patients all over the world.

I then innocently asked: “Are you on Synthroid?” I just knew I had one more victim of this treatment who needed enlightenment.

“Nope”,  he said with a confident and defiant air.  “I have until recently been a pharmaceutical rep with Abbott Labs.”

THWACK.   Standing before me stood a mighty well-trained Big Pharma champion for Synthroid who was going to reveal and defend his propaganda like a master. And that led to the most heated and piercing give-and-take I’ve ever experienced, right in front of the chagrined and wide-eyed sales person at the checkout desk. We were like sumo wrestlers butting our words against each other.

When I explained the slew of continuing symptoms reported by patients worldwide who have been on T4, and no matter how high they raised it…his response?  “Those symptoms can be the result of many issues other than hypothyroidism.”

I responded: “Well isn’t it odd that those who are hypo and on Synthroid, and who get on desiccated thyroid, find those symptoms completely removed.”

His reply?? “Heroin can do the same thing”.  Groan. I simply had to laugh at him. How many times have we heard the same kind of baloney.

He proceeded to tell me in great detail with each point he made that:

  1. He has worked with many patients and they do well on Synthroid (A rep has worked with many patients? And what in the world does “well” mean?)
  2. Clinical trials have proven that Synthroid works. (Ah! You mean those financed by Abbott Labs and which are contrary to the reported experience of millions of patients around the world? Those??)
  3. The TSH lab test gives proof about the efficacy of T4 (Funny how patients all over the world have proven by their continuing symptoms that the TSH lab test for the diagnosis and treatment of hypothyroidism belongs at the bottom of a trash heap)
  4. There are many differences in the efficacy of T4 brands to explain any issues in patients (Funny how not ONE brand of T4 has been exempt from leaving continuing symptoms according to the global rexperience of a huge body of patients) 
  5. Blaming T4 for the amount of adrenal fatigue that “supposedly” some T4-treated patients find themselves with is silly since there can be other reasons for it. (Another laugh on my part.  Clearly, when someone isn’t adequately treated on T4, something has to kick in to keep them going, and voila–it’s those trusty dusty adrenals which eventually just poop out thanks to T4 and the TSH.)

There were much more machine gun stances between us, but that would make this blog post far too long.

One truth we did agree on? That “some” patients do get benefit from using T4. He specifically referred to the elderly. And my quick response? Why accept “some” when patients all over the world report getting rid of that “some” with desiccated thyroid (and especially for certain ones who also treat their low cortisol, low ferritin, and other issues most likely related to an inferior treatment.)

Clearly, we were each deadlocked in our positions.  And he concluded, looking at the sales associate, that neither of us were wrong; we just represented two sides.

And I turned my head, looked him straight in the eye, and said:  Uhhh, no. YOU are completely and totally wrong.

P.S. After he left, the sales gal said she was totally in tune with what I was saying, and wrote down the name of this website. lol lol

*******************************************

See the blog post below about favored Canadian pharmacies, plus many more comments by patients.

What the heck is going on with desiccated thyroid and current shortages? Read about it here.

28 replies