The mission of the The Thyroid Project is to encourage sharing of information and experience between the public and the medical community about the treatment of hypothyroidism (low thyroid function). For at least the past few decades there is a growing awareness of “something missing” in the way suffers of hypothyroidism are treated for their disease. Too many patients, as documented in an on-line study of 12,000 individuals conducted by the American Thyroid Association published in June 2018, (https://doi.org/10.1089/thy.2017.0681) , complain of persistent symptoms of hypothyroidism despite what their doctors believe is successful treatment with levothyroxine (brands include Synthroid, Unithroid, Tirosent, Levoxl). We believe something needs to be done to resolve this conflict between patients and their doctors. Continue reading
For decades doctors have recognized synthetic thyroid hormone known as levothyroxine or brand name Synthroid, as the undisputed choice for treating hypothyroidism (low thyroid function). By virtue of hypothyroidism being extremely common levothyroxine has been the most prescribed medication in the U.S.. According to key medical organizations in this country, the only acceptable treatment of hypothyroidism is the use of levothyroxine alone. Using any other form of therapy is not recommended. Pointing to a significant number of patients receiving levothyroxine who continue to complain of symptoms of hypothyroidism health advocates have been calling for recognition of alternative treatments. One such alternative with a small but enthusiastic following is extract of pig thyroid (desiccated thyroid extract). All of the major organization of endocrinologists fail to recommend this form of treatment but in particular the American Association of Clinical Endocrinologist or AACE in the US has flatly stated this form of therapy should never be used. Physicians and their patients remain deeply divided on this issue. Continue reading
If Hypothyroid and Unhappy, Which Came First?
By Gary Pepper, M.D.
Medical specialists increasingly accept that some patients being treated for hypothyroidism continue to be symptomatic and “unhappy”. The degree to which patients experience this problem while on conventional treatment for hypothyroidism with levothyroxine (Synthroid, Levoxyl, Unithroid, T4) has motivated many specialists to look for other approaches to treatment such as adding T3 (Cytomel, liothyronine) or switching to desiccated thyroid extract (Armour, WPthyroid, Westhroid
Not all experts are convinced looking for new treatment options for hypothyroidism is the right approach. Continue reading
Here is a rare opportunity to let the leadership in endocrinology know how you feel about treatment options for hypothyroidism. The American Thyroid Association is asking all those being treated for hypothyroidism to complete a simple questionnaire which will provide feedback regarding your level of satisfaction with present options for treatment of hypothyroidism. If you want to have your opinion counted log on to the following site and complete the survey!
If the link above doesn’t work copy and paste the following URL into your browser https://www.surveymonkey.com/r/hypothyroidpatientsurvey
Quote from Kathleen, a signer of the petition to Ensure Continued Supply of Armour; Read over 125 comments from other Armour supporters at ipetitions.com
Armour Thyroid, the most popular form of desiccated thyroid hormone replacement in the U.S., has been the center of controversy for decades in the medical community. Despite over 100 years of successful use, the major endocrine specialty organization in the U.S. called for a prohibition on its use. Medicare dropped its coverage of this medication in 2008. Forest Pharmaceuticals, the company that manufactured Armour for decades ran in to regulatory issues and was recently acquired by a succession of larger pharmaceutical companies, the latest being Allergan. Meanwhile, the public continues to demand access to this medication many thousands swear by as the best treatment for hypothyroidism.
Users of Armour have noticed that the price of the medication is increasing steadily. Some are paying three times what they did a few years ago. There is no restriction on what a pharmaceutical company can charge for a medication and within the past years companies such as Turing Pharmaceuticals have tested the limits of just how outrageous the cost increases can be. We therefore initiated a local and on-line petition, to place Allergan on notice that there exists a large and very active advocacy group insisting on continued fair access to this medication. Combining both the on-line and hard copies of signatures, I am proud to say that as of today we have surpassed our goal of 500 signatures to support this effort.
The next step is to present the petition to the corporate leadership of Allergan in such a way as the voices of those who need the medication most will be heard. There is still time to add your name and comments to the on-line petition at ipetitions.com.
On April 11, 2016 an article, Doctors Hear Patients’ Calls for New Approaches to Hypothyroidism, appeared in the Wall Street Journal regarding the growing influence of patient preference on treatment selection for hypothyroidism (sluggish thyroid). The article was written by the WSJ health columnist Melinda Beck. I might have missed it but thanks to a motivated patient I received a copy within a week after its publication. With a glance I knew this report could be a highly significant addition in the on-going debate between specialists treating hypothyroidism (endocrinologists) and advocates of alternative approaches. Continue reading
Dr. Gary Pepper and Dr. Paul Aoun discuss recent findings about thyroid hormone treatment at the 15th International Thyroid Congress
By Gary Pepper, M.D.
According to experts, 10 to 20% of hypothyroid individuals fail to respond completely to T4-only (levothyroxine, Synthroid) treatment. Dr. Anthony Bianco, the president of the American Thyroid Association, and his associates believe this is due to genetic variations in the way thyroid hormone is converted in the body from T4 into T3. T3 is the much more potent form of thyroid hormone and unless the cells of the body receive enough T3, normal function cannot be achieved and symptoms of low thyroid such as fatigue, mental fogginess, constipation, muscle aches etc, persist. Based on the research conducted by Dr. Bianco and colleagues it is thought that in those with the genetic trait making T4 treatment ineffective, blood tests would show low T3 levels. Continue reading
In a blog at metabolism.com several months ago, website visitors were asked to join an email campaign addressed to Dr. Mack Harrell, President of the American Association of Clinical Endocrinologists (AACE). The purpose was to ask help reversing the existing practice recommendation # 22.4 published by the AACE in 2012, calling for a ban on the use of Armour Thyroid in the treatment of hypothyroidism. With over 800 individuals participating, the campaign appears to have achieved some success as the latest AACE treatment guidelines released last month no longer stipulate that desiccated thyroid is unfit for treatment of hypothyroidism. Instead the statement is issued, “ We recommend that levothyroxine be considered as routine care for patients with primary hypothyroidism, in preference to use of thyroid extracts. “, and…. “ Furthermore, there are potential safety concerns related to the use of thyroid extracts, such as the presence of supraphysiologic (unnaturally elevated, ed.) serum T3 levels and paucity of long-term safety outcome data.” Continue reading
by Gary Pepper, M.D.
According to government estimates, 4.6% of the US population aged 12 or more has hypothyroidism (low thyroid function). Based on treatment guidelines published in 2012 by the American Association of Clinical Endocrinologists (AACE), only synthetic thyroid hormone (levothyroxine, Synthroid, Levoxyl) is an appropriate therapy for this condition. According to these guidelines, the biologic product Armour Thyroid, is unfit for this treatment purpose. Armour Thyroid, an extract of porcine thyroid, has been available as a treatment for hypothyroidism for about 100 years. It was first used in the U.S. to treat hypothyroidism in 1892, a year after it was introduced into the United Kingdom. The impact of the AACE guidelines is more than symbolic Continue reading
Zach points out that most of the posts about thyroid treatment issues at metabolism.com are from women. That makes sense because autoimmune thyroid disease is approximately 10 times more common in women than men. But man or woman, thyroid hormone treatment is still the same and his success with Cytomel is something worth noting.
Hi everyone. From what I can gather, most posters here are women, well I’m a guy with similar problems. I thought my story might be useful so that men don’t think it’s a women only problem. I gained a hypothyroid diagnosis at the age of 25 due to Hashimodo’s. There was no direct cause, it runs heavily in my family. For a year, or two, maybe even three (it’s hard to tell due to widespread symptoms), I was feeling nervous, bad memory, attention problems, sleep problems, low appetite, and easily fatigued from a normal 8 hour work day. I assumed my lifestyle choices were causing these symptoms so didn’t go to the doctor for years.
Finally when I was diagnosed I was put on levothyroxine. The very first day I took it I felt IMMENSLY better. However, months down the road the symptoms gradually built up again. Every time my dose was raised, I would feel better for about 2 days, but the symptoms would gradually return. My endo decided to drop my T4 dosage and put me on a combo T4/T3 (T4 was dropped by 50 mcg and one quarter of the drop was added in as T3, so 12.5 mcg of T3). This is the first day I’ve tried it, and instantly the morning of starting on T4/T3 my body aches have almost disappeared and I am feeling much less sleepy at my desk during work.