American Thyroid Association clarifies public dissatisfaction with treatment of hypothyroidism

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.

In the spring of 2017 the American Thyroid Association (ATA) convened a symposium on treatment of hypothyroidism and determined that “it is important to describe the patient perspective regarding hypothyroidism treatment and to share it” with the medical community. Now, after an enormous expenditure of time and effort, the results of their survey of patients being treated for hypothyroidism were published on-line. The full report in print will become available in the coming months. Here are some to the highlights of the ATA analysis of over 12,000 participant responses.

  1. Overall satisfaction with the present choices of thyroid hormone treatment is 5 out of a possible 10Treatment satisfaction with desiccated thyroid extract (DTE) such as Armour and NP Thyroid was highest at 7 out of 10.

  2. Lowest satisfaction was with levothyroxine or Synthroid alone at 5 of 10

  3. Treatment with levothyroxine plus t3 (Cytomel, tri iodothyronine) was next best at 6 out of 10

  4. Patients taking DTE were less likely to report problems with weight management, fatigue, mood and memory as compared to levothyroxine alone or levothyroxine plus t3

The authors conclude, “a subset of patients with hypothyroidism are not satisfied with their current therapy or their physicians” and “higher satisfaction with both treatment and physicians is reported by those patients on DTE”.

After decades of dispute among physicians themselves about the best ways to treat hypothyroidism, patient are finally having their say. Some readers of this blog may have been among the participants in the survey and deserve great credit for sharing their experience with the medical community. It is hoped that this survey will mark a turning point in the discussion about treatment of hypothyroidism and help to forge a change in the way physicians approach this very common and often disabling condition.

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What is The Thyroid Project?

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 years there is a growing awareness of “something missing” in the way sufferers 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, Levoxyl).

We believe something needs to be done to resolve this conflict between patients and their doctors. The first step in our mission is to provide a series of 1 minute, raw and unedited, unrehearsed interviews with patients with hypothyroidism during their actual visit with an endocrinologist. All identifying features (that’s why no faces) have been removed to protect patient privacy.

We hope these videos will be a good first step to opening the conversation between medical professionals and their patients about this serious and decades old controversy. In our introductory interview we share the experiences of a typical person caught in this sad predicament.

 

What is DTE Therapy?

DTE stands for “desiccated thyroid extract” which is made up of thyroid hormones refined from pig thyroid and used to treat people with hypothyroidism (low thyroid hormone). This is possible because human and pig thyroid are very similar in the production of the 4 known thyroid hormones. For over 100 years, DTE had been used successfully to treat hypothyroidism.

T4, also known as levothyroxine, is the most abundant of the 4 thyroid hormones and synthetic levothyroxine has almost completely replaced DTE treatment since the 1980’s. There is no scientific evidence however, that synthetic T4 is better than DTE for treating hypothyroidism.

The almost universal switch to levothyroxine and away from DTE appears to be due to a shrewd worldwide marketing campaign by the makers of brand synthetic T4. Due to this marketing, Synthroid, the major brand of synthetic T4, became the most widely prescribed medication in the U.S. during the 1980’s and 1990’s. Only in recent years has the medical community begun to recognize the failure of synthetic T4 to properly treat all people suffering with hypothyroidism, and the role of DTE to improve results.

Patient Interviews & Videos
Patient Stories
Patient 1

Patient 1

Since 1 Year on Treatment for Hashimoto Disease

“After one year of treatment with Levothyroxine I am still feeling tired, cold, have dry skin, muscle pains, have to keep my nails short. Fatigue is my main concern.” Alternative treatment with DTE was offered. Follow up with our patient and learn all about her experience with DTE treatment.

Patient 2

Patient 2

Suffering for 20 years of hypothyroidism

“Eight years ago I switched to DTE treatment and noticed an improvement. I did not feel well while on Levothyroxine. I am now feeling much better, no longer lethargic or amnesic. Due to insurance issues I had to go back for a short while to Levothyroxine, but the bad symptoms were back. That did not work for me at all.”

Patient 3

Patient 3

Diagnosed with low thyroid 10 years ago

“For years I took 25 mg of Levothyroxine, then my doctors increase the dosage to 225 mg as I was still not feeling better. When they switched me to DTE, for the first time in years I could feel my symptoms improving: no more heart palpitations, my sleep and concentration are becoming a lot better and I finally feel ‘normal’ again.”

Patient 4

Patient 4

Had her thyroid gland removed 14 years ago

“I’ve been on synthetic thyroid hormone since having my thyroid removed 14 years ago. Despite treatment, some of the symptoms persisted, such as dry skin, hair loss, broken nails and feeling tired and cold. I’ve added T3 three months ago and I’ve seen great improvements with regard to my mood, sleep, energy level and feeling better overall.”

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