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
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
Why Patients Aren’t Receiving the Most Effective Treatment for Hypothyroidism
By Gary Pepper, M.D.
For the past 3 to 4 decades endocrinologists worldwide have adhered to the belief that only synthetic T4 (the most abundant of 4 thyroid hormones produced by the thyroid) is appropriate therapy for a sluggish thyroid even though it is known that a substantial number of those treated with T4 only continue to suffer from persistent symptoms of the disease. This may be because under normal conditions the thyroid produces two principle hormones T4 and T3. In 2013 an NIH study showed that 50% of those with hypothyroidism preferred treatment which includes T3 and our group reported that 78% of a subgroup of patients preferred T3 containing medication to treat hypothyroidism . 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
by Gary Pepper, M.D.
Early in May 2014 a patient being treated with Armour Thyroid (desiccated thyroid) for hypothyroidism reported that her pharmacy service would not refill her prescription for Armour Thyroid because it was an “illegal” drug. We were both very distressed to learn of this, but for different reasons. My patient was rightfully concerned that she might be receiving a wildly inappropriate medication, while I was concerned that I might not be able to prescribe a medication I knew to be extremely helpful and safe. Continue reading
I am often asked by patients with hypothyroidism (low thyroid hormone levels), “What is the right thyroid hormone dose for me”. Of course, a physician wants to find the appropriate dose of medication to treat each condition a patient has. When it comes to thyroid disease however, this can be a complex question. Not only is there an issue of whether T4 alone or combination T3 and T4 will be required to treat a particular individual but the therapeutic window of these hormones must also be considered. Continue reading
The 2013 guidelines issued by the American Association of Clinical Endocrinologists and the American Thyroid Association reiterated their long standing opinion that only a single hormone, T4 (Synthroid, levothyroxine) is advised for treatment of hypothyroidism. These key organizations
Every so often I like to bring attention to someone who has struggled to get properly treated for hypothyroidism. Not everyone shares the same dilemma regarding treatment of hypothyroidism because T4 by itself may be sufficient in many instances. But for those who continue to experience symptoms of hypothyroidism despite T4 treatment, adding T3 can be a life changing experience.
Here is Sarah’s story:
I was diagnosed with hypothyroidism in my early twenties and Synthroid did not help. I did not know at the time that many of my symptoms were due to hypothyroidism. After changing to my long time physician, I told her of my original diagnosis some years back. She did only the TSH and told me I was no longer hypothyroid! So for some 15 years after being in her care and continuing to feel crummy, then for the last 8 steadily gaining weight and feeling worse, I was not on any medication. I begged her for Cytomel several years back and was denied…she said she didn’t treat with that. When I finally was deemed hypo by her, she put me on the smallest dose of levothyroxine. It did not help. I finally went to see a shrink and he put me on 25 mcg of Cytomel. For the first time in my post pubescent life, I feel like living. My dose was upped to 50, and I felt even better but my thyroid levels were off, so we are now working on that and I am back to 25 mcg per day. If you can’t get Cytomel from your regular physician, you might get a psychiatrist to prescribe it. It changed my life and I finally feel alive. I’ve since switched primary physician because she wouldn’t listen to me, and she didn’t like that I was on Cytomel. I don’t know what it is about this medication that regular physicians don’t like and make them refuse to treat with it, especially when so many can benefit from it. I’ve lost only 12 lbs since being on it, but I gained nearly 35 unnecessarily while not being properly treated and was told to eat less and exercise more…I only ate about 1500 calories a day and walked my dog 2 miles each day, so I don’t feel it had anything to do with my diet!