Thyroid tidbit #1 COCONUT OIL:

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.

And on the last leg of my journey, I stopped and said to Carlin as she was walking out of her front door “Where you have been lately? I haven’t seen you out walking with your husband.”

Carlin and her husband Clint are probably in their late 70’s–both vibrant individuals and frequent walkers in the same area.

“Well”, she said wistfully as she glanced down the street I had just walked, “I have to go in Monday for a Pacemaker.”

Turns out she has fibrillations and other heart issues, and even walking from her bedroom to her living room can exhaust her.  I told her how well my mother-in-law has done with her pacemaker. She told me she’d be in the hospital for at least 3–4 days for the surgery and observation.

And as we were chatting over the low white fence, I couldn’t help but notice the scar on her neck–the same scar my own mother had from the removal of her thyroid years ago.  And the rest of Carlin’s story, and the reality of her story, made me want to punch the nearest electrical pole in disgust.

Carlin’s thyroid was removed over 40 years ago.  She remembers being on “2 grains of something”–clearly it was desiccated thyroid. And she says she felt really good. But she wasn’t on it long, as her doctor removed it and put her levothyroxine over 30 years ago. You know, that “new and modern” T4-only CRAP which doctors fell for like the blind following the blind beginning in the 1960’s until today. (The story behind the introduction of T4 onto patients in the early 1960’s is in Chapter One of the STTM book)

So I knew. Her heart troubles could be one of the many side effects of the inferior treatment of T4-only medications (which also include Synthroid, Levoxyl, Eltroxin, Oroxine…all of them). My own mother suffered the same fate while on Synthroid her entire life. And patients chat about this all the time on thyroid groups–heart issues while on T4.

I started probing. She has had issues with high blood pressure. Another typical side effect of the crap T4-only medication, and which is removed with desiccated thyroid. She has had issues with depression–another typical side effect of the crap T4-only medication, and which is removed with desiccated thyroid. She talked bitterly about the slew of medications she’s had to be on for years to counter all her problems, and which had given her bad side effects.

And the next worse thing she told me? She had acid reflux so bad a few years ago that they did surgery on her stomach. She had surgery for a condition which is VERY common with thyroid patients who are on T4 meds–low stomach acid from a lower metabolism, which causes acid reflux. i.e. a symptom of continued hypothyroidism which is CORRECTED when on desiccated thyroid.

It was hard to contain myself. Here was this vibrant, life-loving, intelligent woman who has been on T4-only for over 30 years and has endured health problems, surgeries, side effects from all sorts of money-grubbing pharmaceutical pills, and now, has to go in Monday for a pacemaker. And in all probability, most of what she has gone though could have been prevented if some doctor had been WISE enough to keep this woman on desiccated thyroid.

I am livid and sick to my stomach.

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• Are you chewing up your Armour or Naturethroid? It will make the treatment far better, as it will release the desiccated thyroid from the excess cellulose.  If you are on compounded, you need to tell the pharmacist to stop using cellulose as a filler. On Erfa? You can do it sublingually.
• If you are reading this right on STTM’s blog, and would like to be notified of each blog post, just sign up to the left and under the links.
• Have you done labs and found yourself with high RT3? Get off Selenium for the time being, as it can help convert T4 to the RT3 along with the other reasons you make too much.
• Want to spread the word about far better treatment? T-shirts and bumper stickers are here.

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.

If you are on either Armour or Naturethroid, make sure you CHEW THE TABLETS UP thoroughly to release the desiccated 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.

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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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.

The large size STTM t-shirts are now gone. If you can wear an X-large or XX-large and want to spread the word to others, go here. And the bumper stickers REALLY catch attention!! I am stopped in parking lots because of mine. YOU could change someone’s life!

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?

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!”

Jimmy Moore is a living success story about the benefits of a low carb diet–losing 180+ pounds in 2004 and regaining his health and vitality.  As I do about far better thyroid treatment,  Jimmy has been on a one-man mission to tell the whole world what livin’ la vida low-carb can do for them.

Eating low carb can be a very important strategy for those with hypothyroidism, especially while on desiccated thyroid and seeking to reverse the damage of being on T4 meds like Synthroid, et al.

And for those of you with adrenal fatigue, following Jimmy’s low carb life style can be very beneficial when you need to be on cortisol, which can cause weight gain for some, but is an important treatment for your low cortisol situation.

Have a great day!

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.

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?

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.

2. What clued you in that you weren’t doing well on the new Armour?

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.

3. Did you try raising it? What were the results?

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.

4. Did you try adding T3 to it? What were the results?

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.

5. Did you do anything else to try and make the reformulated Armour work, and did it help?

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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(Note: this is a long post, but will be worth every penny if you read it all!)

When STTM first put out its shingle in December of 2005 (with most of what you see today going up in ’06 and ’07 with continual additions),  my goal with this site was simple: to educate thyroid patients.

And as I saw it, by educating patients on what we had been learning, patients could in turn, take that information into their doctors offices and push for change. And it’s been working, slowly. We now have more doctors than ever before who know about desiccated thyroid and are willing to prescribe it, even if they are the minority. STTM has a page on how to try finding one of those good docs.

But as I wrote about this fact in my previous post, certain patients can still find themselves frustrated, angry and sick because of doctors. It’s not a pretty picture for some.

I am lucky, as I’ve always managed to have a fair doctor to work with, without complicated issues. But a lot of patients aren’t as lucky.  They either can’t find a doctor to treat them correctly after trying repeatedly, or they simply can’t afford to keep driving to find a good doc (with no promises that they will get the good doc they desperately need anyway). As a result, many thyroid patients report being forced to self-treat.

Even though STTM was never created as a self-treatment site, I am aware that some patients use it that way.  And I can never condemn them. Granted, a few who make their own choice to self-treat can run into problems, most especially from undiscovered or undiagnosed low ferritin or low cortisol. But it’s a choice they seem to make out of desperation.

The following  post is by  Guest Blog poster and UK’s thyroid patient advocate Sheila Turner of TPA-UK.  These are her courageous thoughts concerning self-treatment, and her angst against anyone who tells patients not to do so.  Overall, UK patients have a very tough situation in the UK with doctors, but so do the vast majority of patients around the world, as well as US patients. See what you think…

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It’s not uncommon to be told as a suffering and debilitated thyroid patient to never self-diagnose, never self-treat, never self-monitor.

And in an ideal world, we could take those admonitions on. But we are not living in an ideal world.

You might as well tell everybody with ill health to put up with whatever they are suffering and leave their health in the safe hands of our ‘wonderful’ doctors whom we can trust implicitly.  Sadly, many doctors have little (or no) education in the workings of the thyroid system.

Or, you might just try touring the country until you find one who will help. Well, if you have the energy and the money to do that, it could take a heck of a long time before finding such a good doctor — indeed, IF you ever find such a doctor.

I run a very successful Internet Thyroid Support group, plus web site for thyroid disease, and I have seen at first hand (and experienced it myself) the nightmare of having to put up with the terrible suffering caused by Doctors.

In the UK, for example, it is organizations such as the Royal College of Physicians and the British Thyroid Association who have terrified NHS doctors so much that they now no longer prescribe any T3 hormone containing products, neither natural nor synthetic, for fear of being reported to the GMC  regulatory body with the threat of losing their career and livelihood.

One comment I hear from those who condemn self-treatment is the problem of over-medicating. In reality, it is the reckless prohibition of all T3-containing drugs that causes cardiac arrhythmia and risk of  sudden death -  which would amount to at least manslaughter, and might even constitute murder if the outcome is strictly foreseeable - which it is. It is NOT patients who should be criticized. They have been driven to buying prescription medicines for thyroid and adrenal insufficiency. Criticizing self-treatment is an outrageous claim and one that the medical regulators would no doubt be delighted to hear. Seems that not only are doctors becoming sorely afraid of the Regulators, those who condemn self-treatment are also falling into the same trap.

The “basic premise” that underlies my own purpose and advocacy is to help those being left to suffer because the medical regulators and government are refusing to give a proper diagnosis — and for those who do get a diagnosis, giving them levothyroxine sodium-only as a thyroid hormone replacement.

Whenever a new member comes to TPA, we encourage them to read, read and read again and to look at the information in our FILES section which is there for all to see. We tell them about the associated conditions that go along with being hypothyroid such as low adrenal reserve, systemic candidiasis, mercury poisoning and ask them to request blood tests from their doctor to see if their levels are low in the reference range for ferritin, vitamin B12, vitamin D3, magnesium, folate, copper and zinc. We have information on the reasons they need to check these and if any of these are a problem, make sure they are aware of just how essential it is that they eliminate these conditions, one by one, before starting thyroid hormone replacement – such conditions are NOT automatically checked by NHS doctors – and they put their patients at great risk by automatically prescribing levothyroxine.

We all know of the serious ramifications for those patients who are not being given a correct diagnosis or treatment. However, it is the endocrinologists and medical regulators who are guilty of causing much of the unnecessary suffering, not those patients who are driven to self diagnose, self treat and self monitor, as those who criticize self-treatment would have us believe.

Mainstream doctors do not appear to be even aware of the many common and often undiagnosed symptoms and dangerous consequences of low thyroid. These include: serious mental problems, seizures, heart disease, diabetes including misdiagnosis and complications, constipation resulting in colon cancer, all female problems (due to high amounts of dangerous forms of oestrogen), including: tumours, fibroids, ovarian cysts, PMS, endometriosis, breast cancer, miscarriage, heavy periods and cramps, bladder problems leading to infections, anaemia, elevated CPK, elevated creatinine, elevated transaminases, hypercapnia, hyperlipidemia, hypoglycemia, hyponatremia, hypoxia, leukopenia, respiratory acidosis and others.…

If sufferers of the symptoms are NOT getting a proper diagnosis and the thyroid hormone replacement that would give them back their life and health through mainstream doctors, how on earth would you recommend they do this, apart from scouring the country to find a doctor elsewhere who would help them, or recommending they get enough money together to see a private thyroid specialist. Do you REALLY have such complete faith in the medical profession to know that we should ALL leave our thyroid health in their hands, sit back and do nothing – and probably just wait to die? How can you recommend that they do NOT buy prescription medications and should not self-medicate, self treat or self monitor when there is NO other option left open to them.

If those who criticize self-treatment have personally heard from “DOZENS” of people who have followed the “increase my own dose of natural thyroid” self medication approach, then yes, something is seriously wrong with the ‘teachings’ or advocacy of such groups. Education should be encouraged by all, and if members do not understand the reasons why they need to take great care, such explanations should be given in such a way that they understand.

I rarely hear of members ending up in Emergency Rooms battling potentially fatal heart arrhythmia’s, atrial fibrillation, and/or ending up in worse health than before, including long-term and permanent heart damage through self-treatment. I have heard of many NHS patients being admitted to A and E, who had been treated (or not) by mainstream doctors who refused them the correct therapy their symptoms needed.

In good conscience, I do recommend that thyroid patients self-diagnose, self-medicate and self-treat if they are being left to suffer, because organizations such as the RCP, BTA TSH reference range is so huge that they will never go outside of it. This reference range is 0.5 to 10.0 in the UK – probably the widest in the world. Then, we have to put up with the fact that the only thyroid function test that will be done is the TSH – and doctors will not test Free T4 in a lot of cases, never mind free T3 level. Also, NHS Pathology labs refuse to test free T3 even if the doctor has specifically requested it. So, many of us will NEVER get a proper diagnosis – being left to suffer their unnecessary symptoms for years and become wheelchair/bed bound in many cases, having to leave paid employment.

Such patients are told they have a ‘functional somatoform disorder’ when their TFT’s are normal, when they continue to complain of symptoms – or – those who are lucky enough to get a diagnosis, who are treated with levothyroxine only yet still complain of debilitating symptoms are told also “you have a functional somatoform disorder” or “your symptoms are non-specific” .

What mainstream doctors do not recognize is that thyroid function tests ONLY test the amount of thyroid hormone being secreted by the thyroid gland.  TFT’s (more correctly should be called Thyroid GLAND function tests”, do not test to show whether there is peripheral resistance to the thyroid hormones at the cellular level. This is not due to a lack of thyroid hormones secreted by the gland. Blood tests do NOT detect Type 2 hypothyroidism. Type 2 is usually inherited. However, environmental toxins may also cause or exacerbate the problem. The pervasiveness of Type 2 has yet to be recognized by mainstream medicine, but already is in epidemic proportions. I think many sufferers of the symptoms of hypothyroidism know very much more than their medical practitioners. I do know which road I would like to follow – that is to find an excellent doctor I could trust implicitly, but sadly, the ONLY road many of us have to follow to get back normal health is the one where we have to self medicate.

Please do NOT blame patients who are driven to self diagnose and medicate as being the reason why the US government, or any other government for that matter, are now eliminating the availability of natural thyroid and synthetic T3. You are being sucked into believing what they want you to believe.

Levothyroxine is a synthetic medication that can be patented, and has made billions of pounds for the Big Pharma and for the regulators of hypothyroid guidelines. Natural thyroid products cannot be patented. Should doctors prescribe either synthetic or natural T3, the majority of sufferers of the symptoms of hypothyroidism would regain their normal health – Big Pharma would suffer.

You should perhaps read the book “Dirty Medicine” by Martin J Walker if you have not already read it. Those who criticize self-treatment appear to be accusing all those suffering symptoms of hypothyroidism who have been driven to buying medications without prescription and self treating as making it worse for the rest of those suffering. It is NOT them who are abusing T3. If a T3 hormone containing product was properly prescribed, there would be NO NEED FOR PATIENTS TO BE SELF MEDICATING.

Self medicating, whatever drug we are taking, whether using a T3 hormone containing product or not, is always risky and patients must be fully educated in its use. However, self medicating with any drug runs risks, but I would rather self medicate with the chance of getting my health back than leaving my health in the hands of totally incompetent doctors – incompetent because the teachers in our medical schools are incompetent.

For those who are being left to die, without the treatment that will make them well, do-it-yourself medication is the only option left open to them. Would you really deny them this?  Leaving patients without the thyroid hormone they need is appalling and one of the reasons TPA is campaigning to bring about changes in the diagnosing and treatment of the symptoms of hypothyroidism.

It can be appreciated to say to work with the right doctor, but what do you recommend if patients cannot find the ‘right’ doctor?? Perhaps you should all come over here to the UK and help those sufferers in finding the right solution and offer to help them help to find a “good doctor”.

Sadly, there are never any solutions given or alternative to self diagnosing, self-treating or self-monitoring, other than to “find a good doctor”. This does not help Internet thyroid support forum members.

Sheila
http://www.tpa-uk.org.uk/

It’s a continuing travesty, and you see it in patient groups.

i.e. many patients still find themselves sick and disabled, stumbling miserably from one uninformed doctor to another…in spite of the wonders of natural desiccated thyroid, the testimony of changed lives, the education of patients thanks to the STTM website & book, and a small but growing body of wise doctors who seem to be “getting it”,

So what’s the problem?? It lays with our doctors and the entire medical profession.

1. Heavy-handed control over your medication: You go to pick up your prescription, and find your medication has been lowered by your doctor without your agreement or knowledge, as happened to Terry here (scroll down to find her post).
2. Ignorance about adrenal fatigue and treatment: You clearly have an adrenal problem, and one doctor dismisses its existence, another doctor poo-poos the saliva test, another doctor tells you cortisol supplementation is dangerous, another doctor thrusts all his herbal supplements at you, another doctor thinks that 5 or 10 mg cortisol is enough…and on and on and on.
3. Dismissing the Ferritin test: You want to know what your ferritin is, but the doctor’s nurse underscores that they’ve already checked your iron levels, so there’s no need for more testing.
4. Dismissing you: You are wise thanks to reading, researching and living in your own body, yet your doctor calls you a problematic patient on your charts, dismisses you, or gets angry.
5. RT3 huh? You have strong suspicions that your Reverse T3 is too high thanks to adrenal fatigue, low ferritin, undiagnosed gluten issues, or other reasons, yet this doctor refuses to test you, that doctor says an RT3 excess is rare.
6. Look at me! Look at me! You make an appointment with that great doc who has a fabulous website/book and who shouts that he uses desiccated thyroid with a big smile…yet any or all of the above and below occurs with him/her or his “trained” associates.
7. Continued worship of the TSH lab test:  Too many doctors still think the TSH lab test is from God Almighty. So when you finally start to feel well on desiccated thyroid with a TSH at zero or below…WHAM…you must lower your meds because you are somehow “hyper” in spite of no symptoms to match.
8. Pharmaceutical addicts: You mention your lingering hypothyroid symptoms, and you are bandaided with anti-depressants, anti-anxietal meds, statins, BP pills, pain tablets, acid reflux pills, calcium for your thinning bones…instead of understand that these are ALL side effects of poor treatment or undiscovered issues.
9. The country you live in: The desperation of UK thyroid patients is deep thanks to a thyroid association and a College of Physicians which tightens the screws if a doctor dares to prescribe a life changing medication with T3 in it.  Or just as frustrating, having a government which forbids desiccated thyroid to arrive to you in the mail.
10. Reformulations and Big Pharma apathy: Forest Labs turned one of the most popular and effective desiccated thyroid brand, Armour, into a pill with too much cellulose and too little sucrose , causing a massive return of symptoms in many, sooner or later. RLC also reformulated their Naturethroid, and though some patients still do well on it, others do miserably, and we are left wondering WHAT to take. (Thank God for Erfa’s Canadian “Thyroid”, but will we be able to continue with this fabulous desiccated thyroid product?)

And there are more reasons you might want to bring up in the Comments part of this post.

So you see, it’s no wonder so MANY patients feel forced to self-treat, yet they are also condemned for doing so. I refuse to condemn them for exactly the reasons above.  Petty. All I ask is that we all try to find a good doc, but it may be quite hard when you consider all the above.

All-in-all, we still have  a way to go, baby, and especially with the doctors we try so hard to get help from…but can’t.

P.S. Are you brave? Walk into your doctor’s office with the STTM shirt.

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.