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Each day, when I think about the passing of Dr. Lowe (which you can read about here), I reel in shock at this huge loss in our fight for better thyroid treatment and SANITY.

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.

(Reading this via email notification?  Remember to leave a comment RIGHT on the blog post by clicking on the title of this blog post in your email.)

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:   In my blog post last February 15th, 2011, I sent you in the direction of a kooky, creative and hilarious You Tube video titled “Our Holy Miracle of the Infallible TSH Test”.

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.

If you have 1/2 grain (30 mg)  tablets, a label error caused some one grain tablets (60 mg)  to be labeled as 1/2  grain tablets (30 mgs). That would mean you could be overdosing yourself if you are taking 1/2 grains.  Both sizes need to be returned to your pharmacist with this information and exchanged.  i.e. COPY THIS when you take them back.

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.

In the daily emails I get from folks,  some make my heart ache. And a recent email just underscored to me how we still have a long way to go in changing the inane stupidity of the medical establishment.

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”.