And now we have to ask: who will fill those shoes when it comes to the continuation of thyroidscience.org and the courageous message of Dr. Lowe?? Even the front page contains an important article  titled “TSH is Not the Answer,” a report Dr. Carol Rowsemitt and Dr. Thomas Najarian: Their explanation and verification  i.e. Dr. Lowe fought for what PATIENTS ALREADY KNOW TO BE TRUE about the lousy TSH lab test!

And Lowe announced that he was next coming out with an article concerning ” false statements of fact online about T3-containing thyroid products including Armour Thyroid” by The British Thyroid Association and UK Royal College of Physicians.  He continued: ” The scientific facts patently show the falsehood of the two organizations’ statements. Is this a failure of responsibility to study scientific issues before making public pronouncements on them? Or do the statements constitute science fraud?”    Unless it was already written, we might never see this article. But we all know the truth.

The loss of Dr. Lowe propels me to ask: Who do YOU see as a medical professional who has the following qualities:

• high intelligence
• an interest in true science rather than blindly following research with outcomes based on who paid for certain studies
• the courage to speak the truth, even if it goes against the grain of staid medical opinion
• compassion for thyroid patients and the willingness to listen to their experiences

Who, as a medical professional, can patients give a vote of confidence to as someone who can continue the legacy of Dr. Lowe?  Propose some names by commenting on this blog post below. (If you are reading this via the Email Notification, click on the title of this post, which will bring you directly to the blog post where you can leave a comment).

A MESSAGE FROM ELLEN GETTENBERG of ACELLA (THE MAKERS OF GENERIC DESICCATED THYROID CALLED N.P. THYROID)

Over the past several weeks, Acella has experienced production planning issues associated with NP Thyroid.  We sincerely apologize for this and want to inform our valued customers that we are putting measures in place now to prevent any further limited supply.  We anticipate improved availability by the end of January.  Please check back here on our website for further updates.  If you need additional information, please email us through the “Contact Us” page on NPThyroid.com.

Ellen Gettenberg
Director, Marketing| Acella Pharmaceuticals
9005 Westside Parkway | Alpharetta, GA 30009
www.acellapharma.com

WANT TO PAY IT FORWARD AS TO WHAT STTM HAS GIVEN YOU?

Out of my own savings last Fall, I paid for three months in hiring a publicist for the message of Stop the Thyroid Madness…i.e. through the end of December. My goal is to reach far more who may not understand WHY they have problems thanks to the lousy TSH lab test or T4-only meds like Synthroid, Levothyroxine, etc. And she has done a fabulous job in getting interviews and articles out there–you can see what she has done on the donation page mentioned below.

After December, patients donations completely paid for January. Now we are working on February, and nearly half way there. But this will end sooner than later if more donations don’t come in. Go here to read about it and Pay It Forward.

HAVE YOU CONSIDERED YOU MAY NOT NEED HC TO HEAL YOUR ADRENALS? OR IF ON HC, YOU CAN DO THIS A LOT FASTER?

UK thyroid and adrenal patient Paul Robinson made a VERY interesting discovery–that he could heal his adrenals with his unique use of T3. Yup, and he SUCCEEDED. And it’s quite exciting news for adrenal fatigue patients.  Additionally, if you are on T3, his  T3 titration process alone is vastly superior to most other recommendations in the use of T3, and means you can use less!!

Take the time to find out for yourself!!  There’s a good summary of what he discovered in the new STTM Facebook Adrenals group (and please note this group is for PATIENTS ONLY, not medical professionals. And for approval to the group, you canNOT have a hidden info and friends. We have to be this way to keep out spammers, and to see that you are who you say you are).  You can also order his book from this Recommended books page on STTM. To order the patient-to-patient STTM book, go here.

As thyroid patients, we are continually seeking doctors who understand successful patient experience. It’s not always easy.  So when we do find a good doctor, we’re ecstatic. But little do we know the challenges a good doctor faces!  The following was sent to me by a progressive, open-minded MD, of whose name I have removed to protect him from his own medical board. Be appalled and amazed. I was.

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Janie, it is not infrequent that we are sent messages like this from Pharmacy Benefits Managers. Here is a typical letter with my reply.

Considerations for Your Review

1. Drug Safety Consideration: ARMOUR THYROID Use in Seniors  Our claims record suggests that your older patient is receiving ARMOUR THYROID. Thyroid hormones should be dosed cautiously in seniors due to a potential risk of cardiac effects. Desiccated thyroid products contain variable amounts of T3. T4 and other iodothyronine compounds. Because older patients have a high prevalence of occult
cardiac disease, the Beers criteria generally recommend transition to a safer alternative (e.g.. agents like levothyroxine with more standardized hormone content). Please consider the potential risks versus benefits of therapy for your patient.

Reference(s):
1. Thyroid Agents. In: McEvoy GK, ed. AHFS: Drug Information. Bethesda, MD: American Society of Health-System Pharmacists; 2008:Sec 68:36.04.
2. Pick DM et al. Updating the Beers Criteria for Potentially Inappropriate Medication Use in Older Adults. Archives of Internal Medicine. 2003; 163:2716-2724.
3. Semla TP et al. Geriatric Dosage Handbook. 13th ed. Hudson, OH: Lexi-Comp; 2007.

(And this brilliant doctor’s reply:)

Dear  xxxxxxx

Re: Armour Thyroid Products

I invite your attention to the P.I. (product information) in the PDR on levothyroxine (Synthroid). I quote:  PRECAUTIONS “Patients with underlying cardiovascular disease—Exercise caution when administering levothyroxine to patients with cardiovascular disorders and to the elderly in whom there is an increased risk of occult cardiac disease.”

DOSAGE AND ADMINISTRATION

“Caution should be exercised when administering SYNTHROID to patients with underlying cardiovascular disease, to the elderly, and to those with concomitant adrenal insufficiency (see PRECAUTIONS).”

I read your statement that says, “Desiccated thyroid products contain variable amounts of T3 and T4 and other idothyronine compounds.”  Forest Pharmaceuticals has stated their product is standardized as published in the PDR: “ One (1) grain or 60 mg of Armour contains by assay 38 mcg levothyroxine (T4) and 9 mcg liothyronine (T3).” I do not ever remember Armour Thyroid ever being recalled for stability or lack of standardization.

However, Synthroid and the other forms of levothyroxine have had significant problems.

SYNTHROID AND OTHER T4 PRODUCTS were subject to FDA NOTICE in the FEDERAL REGISTER: AUGUST 14, 1997 (VOL 62, NUMBER 157). These were the drugs that were not well standardized and were not stable. I quote from the report: “Some of the problems reported were the result of switching brands. However, other adverse events occurred when patients received a refill of a product on which they had been previously stable, indicating a lack of consistency in stability, potency, and bioavailability between different lots of tablets from the same manufacturer.”

Thank you for caring for the health of the patients receiving medications from your company. I request that you check your facts fully before issuing such flyers.

Respectfully,

xxxxxxxxx, M.D.

Cc: FOREST PHARMACEUTICALS

BRAVO TO THIS DOCTOR in the face of complete ignorance!!

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STTM HAS HIRED A PUBLICIST and YOUR HELP IS NEEDED!

Do you value what Stop the Thyroid Madness has given you??  Something has to be done to reach millions of individuals still lingering without a diagnosis due to the TSH, or suffering due to being on T4-only meds! You and I run into them DAILY and don’t even know it!  Or we have many family members in the TSH/T4 category. And the media does NOTHING about this scandal.  STTM has hired a publicist, and you can read about it here. But I can’t do this alone. If you value Stop the Thyroid Madness, please considering helping.

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TPA (Thyroid Patient Advocacy) STILL NEEDS YOU TO REGISTER 

Have you registered for the Counterexamples to T4-only?  So far, 1437 have, and Sheila Turner is determined to get that number to over 2000 at least. There were 900 participants on those flawed studies showing that T4/T3 combination worked no better than T4-only, and we have got to prove our point that this is wrong.  All you have to do is answer 3 very short questions.  http://www.tpa-uk.org.uk/register_of_counterexamples.php

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HUMOROUS VIDEO ABOUT ADRENAL FATIGUE:

Well, creator and thyroid patient Brian Foreman has brilliantly done it again, but this time, it’s about adrenal fatigue and titled “Why Isn’t My Thyroid Medication Working?”  Have fun watching it, and get ready for a good laugh here and there.

Want to know more about adrenal dysfunction? Go here to find out about the problem, and do the Discovery Tests tests to see if you might have it.  Note that it’s critical, if the self-tests seem to point to an adrenal issue, to do a 24-hour adrenal saliva test to see what is going on at four key times during a 24-hour period.  Here is a compilation of what patients have learned in how to treat low cortisol, and this page is important to share with your doctor. If you want even more detail, it is strongly recommended by thyroid patients to order the REVISED STTM BOOK, and see Chapters 5 and 6. This can be carried right into your doctor appointment with key areas highlighted and bookmarked.

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BIPOLAR, DEPRESSION and HYPOTHYROID: A thyroid patient emailed me with just one more article on the connection between having a bipolar disorder and one’s thyroid, including the fact that there is “a strikingly high rate of autoimmune-caused thyroid problems in people with bipolar disorder”, aka Hashimotos disease.

And even if depression is your main problem, the article mentions “gently pushing your thyroid status over toward the “hyperthyroid” end of normal, if you happen now to be toward the hypothyroid end of normal”, in order to adequately reverse the depression problem. I constantly think back about my own mother who suffered from depression, succumbed to having shock therapy, and ended up on anti-depressants the rest of her life because of her use of Synthroid.  So we know that treating hypothyroidism with direct T3, such as is found in desiccated thyroid, is far better. 

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IS THERE A BABY KNOCKING IN YOUR BELLY?  I often see pregnant women in forums wondering how their babies are doing and how the thyroid works in helping their babies, or hurting them if the mother is pregnant and hypothyroid.  Here is an article sent to me that can help inform as to changes in your thyroid function when pregnant, how thyroid hormones affect the brain of the fetus, and the role of iodine.  It can underscore how important proper treatment is while pregnant.

What about adrenal fatigue which so many thyroid patients find themselves with, and pregnancy? A gal named Anne has written about this issue here. She has Addisons disease, which is more about a disease process and can be autoimmune, but her comments can be very applicable for those of you with sluggish adrenal function. Share all of this with your doctor. Need to find a good one?? Go here.

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TWO COMMON MISTAKES  MADE BY PATIENTS:  In patient groups, here are two common mistakes I see patients make:

1. Not doing the 24 hour adrenal saliva test if adrenal dysfunction is suspected:  I can’t stress this enough:  patients have learned repeatedly they shouldn’t have rushed into cortisol treatment if they or their doctor’s “suspect” an adrenal problem. Yes, STTM has outlined several self-tests, called Discovery Steps, that you can do in your own home to see if anything is suspicious. There is also a checklist of symptoms related to adrenal problems. But the problem is two-fold:  symptoms of high and low cortisol can be exactly the same, and ‘where you are low’ and ‘where you are not’ can dictate how your treatment should be.  Some only need to lower high cortisol, some may do well on simply adaptogens like Ashwagandha or Rhodiola, some do well on Isocort or OTC adrenal cortex, and some outright need to be on prescription hydrocortisone. Teach this to your doctor. Here is where you can order your own saliva tests, and then take them into your doctor’s office.
2. Not getting copies of labwork: Contrary to how your doctor says it, you have a right to have copies of your own labwork. And you should! Patients often come on groups seeking feedback from other patients, and yet, have no idea what their labwork was, or the ranges. Getting copies of labwork is just one step of many in being a pro-active patient. Here is how to read labwork according to the experience of thyroid patients.

NOTE: they would be Lot #: 1077413 with an expiration of  9/30/2011  This is what your pharmacist would need to know.

PRODUCT

Armour Thyroid (thyroid tablets, USP), 1/2 grain (30 mg) , each tablet contains 19 mcg levothyroxine (T4) and 4.5 mcg liothyronine (T3), 100-count bottle, NDC 0456-0458-01. Recall # D-231-2011
CODE
Lot #: 1077413, Exp. 9/30/2011
RECALLING FIRM/MANUFACTURER
Recalling Firm: Forest Pharmaceuticals Inc., Earth City, MO, by telephone and letters on October 6, 2010. 
Manufacturer: Forest Pharmaceuticals Inc., Cincinnati, OH. Firm initiated recall is ongoing.
REASON
Labeling: Label error on declared strength; some bottles are mislabeled as containing 1/2-grain tablets but actually contain 1-grain tablets. The entire lot is being recalled even though some bottles are labeled correctly because bottles of 1/2-grain and 1-grain could be shrink-wrapped together.
VOLUME OF PRODUCT IN COMMERCE
31,172 bottles approx.
DISTRIBUTION
Nationwide, PR, Belgium and the United Kingdom

http://www.fda.gov/Safety/Recalls/EnforcementReports/ucm242808.htm

• See my post to a very, very thankful individual, here.
• Have you switched from one brand to another? Tell us how you did here.
• Has STTM made a difference in your life? Make a donation to the hosting fees here, as they have become quite large due to the popularity of this site:
• Need to talk to other patients, or want a one-on-one consultation with Janie? Go here.

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

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

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

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

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

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

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

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

A GOOD REPORT ON THIS OVER-THE-COUNTER THYROID SUPPORT

A gal recently used the Contact Me form on STTM to ask if I’d ever compiled patient experiences on ThyroGold–a nonprescription, over the counter, desiccated thyroid formulated by Dr. John C. Lowe and made from the thyroids of New Zealand cows who are pasture-fed. I said no–haven’t heard yet from anyone on it long enough.

But just thirty minutes later, here comes an email from a gal who has been on it four months, feels very good with many noted improvements. She is so thankful, and stated STTM gave her the confidence to feel she could work with ThyroGold. And lo and behold, her TSH-worshipping, Synthroid-prescribing doctor is watching her progress, and pleased.

COCONUT OIL AND ALZHEIMERS

Many a thyroid patient have heard of the benefits of coconut oil, especially as a food product which can stimulate your metabolism.

But a Dr. Mary Newport discovered in 2008 that just 4 teaspoons a day of virgin coconut oil just might have the right ingredients–medium-chain triglycerides which produces ketones by the live–to stop the onset or even reverse some of the damage caused by Alzheimer’s.  She witnessed this in her own husband. You should read her story here, and more on the Coconut Ketones website here.  Since my mother, and her father, both got Alzheimers by the time they were eighty, this especially interests me!

In fact, coconut oil just night have the same successful results with Parkinson’s disease, Huntington’s disease, multiple sclerosis and amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease), drug-resistant epilepsy, brittle type I diabetes, and type II (insulin-resistant) diabetes. WHOA!!

Says Dr. Newport:

Our cells can use ketone bodies as an alternative fuel when glucose is not available. Brain cells, specifically neurons, are very limited, more limited than other cells, in what kinds of fuel they can use to function and to stay alive. Normally, they require glucose (sugar), but they can also use ketone bodies. Humans do not normally have ketone bodies circulating and available to the brain unless they have been starving for a couple of days or longer, or are consuming a ketogenic (very low carbohydrate) diet, such as Atkins. In Alzheimer’s disease, the neurons in certain areas of the brain are unable to take in glucose due to insulin resistance and slowly die off, a process that appears to happen one or more decades before the symptoms become apparent. If these cells had access to ketone bodies, they could potentially stay alive and continue to function.

P.S. Did you see the “one or more decades before symptoms become apparent”? That means we need to be on coconut oil daily NOW,

ARE ENDOCRINOLOGISTS FROM ANOTHER PLANET?

A patient on STTM’s Facebook page recently reported that since her HMO would only allow her to see an Endocrinologist, off she went to the appointment.

And what does her new Endo tell her? Ready? That her TSH was fine, low T3 & T4 meant nothing, and there is NO evidence that Adrenal Fatigue is real (in spite of the fact that when she tries to raise her Armour, her heart goes wacky–a sure sign of low cortisol). She concluded that there is “nothing like being lectured on things when you know more than they do.” She felt forced to keep her mouth shut by his reactions if she did try to teach him something, and just resigned to “agreeing with everything he said and left”.

And her summary of that Endo escapade? “My dose of Armour is right, makes no difference I’m fatigued, had to quit my job, leg swelling so bad I can hardly get around. None of that mattered. ONLY the TSH test.”

And unfortunately, her comment about knowing more than the doctor is very, very common now thanks to STTM and patient groups. All we can hope for are those doctors who are humble and open-minded to what we now KNOW to be true!

TWO OF THE MOST IMPORTANT CHAPTERS IN THE STTM BOOK

Chapters 3 and 11

REMEMBER ME MENTIONING THE GAL WHO PUT THE STTM BUMPER STICKER ON HER HUSBAND’S CAR?

Well, he got followed into the Barber Shop this time by a male nurse! So now, he wants something to hand out to these folks who keep approaching him. haha. So she has made copies of the STTM FLYERS and he’ll have them in the car from now on. This is reaching people…one by one!

Namely, Dr. Ian Carroll, MD, MS, and Dr. Jarred Younger, PhD of the Stanford Systems Neuroscience and Pain Lab are currently enrolling patients for a clinical trial investigating T3 for the treatment of fibromyalgia. (Fibromyalgia is a chronic syndrome which causes widespread musculoskeletal pain and debilitating fatigue, also aching, twitching, burn sensation, joint issues).

Of course, patients who switched to desiccated thyroid the past ten years (or have used synthetic T3 in their treatment) already KNOW the truth from experience (which is usually always pooh-poohed by clinical-trial-worshipping, clinical-presentation-ignoring, medical professionals.).

Namely, fibromyalgia is usually the result of undiagnosed hypothyroidism (due to the inane TSH lab test) and undertreated hypothyroidism (due to the worst medication ever thrust on patients, aka T4-only, or Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, etc.) i.e. you need direct T3, the most powerful thyroid hormone, to adequately treated hypothyroidism.

i.e. we’re all kinda going duhhhhhhhh here.

But, if a clinical trial is needed to prove what we already know (and so has Dr. John C. Lowe known it for many years), it’ll be just one more underscore of the truth. Go to the following to read more and/or enroll:  http://snapl.stanford.edu/t3/

P.S. the Bobbsey Twins of the failure of the TSH labs test and treating with T4-only:  Fibromyalgia and Chronic Fatigue Syndrome.

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Does your inner ear itch?? Got an email from a gal who was on Synthroid for 7 years, and for the last 5, had torturous deep inner ear itching. And guess what?? It went away just two days after switching to desiccated thyroid. Yup, another long and pathetic symptom of a poor treatment. (If you still have it on desiccated thyroid, see what mistakes in your treatment you need to identify and change, which is also Chapter 11 in the STTM book with a little more details added.)

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Yippee!! Direct Labs is the third lab facility to partner with STTM in offering the kind of labs that patients who frequent STTM know are important in their quest to feel better and educate their doctors.  Unfortunately, they don’t offer saliva like the other two, which are Healthcheck USA and MyMedLab, but they have all the other labs you may be interested in. You can view them by going to STTM’s Recommended Labwork page.

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: http://www.stopthethyroidmadness.com/how-to-find-a-good-doc as well as posting your city/state in the subject line of patient groups here: http://www.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.

(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.