Half of Hypothyroid Patients are Not Satisfied With Their Current Treatment.

I am happy to share that greater attention is being paid to hypothyroid treatment and quality of life of patients with hypothyroid.  Here (below) I report the data made available to endocrinologists who attended a special American Thyroid Association (ATA) conference held prior to this year’s Endocrine Society Meeting, which took place this 2017 Spring in Orlando Florida.  At the end I present my thoughts and hopes for the hypothyroid patients and their treatment.

The ATA conducted a survey on line to determine how hypothyroid patients perceived their health and efficacy of their treatment.  Amazingly 12, 000 hypothyroid patients responded. The results of this survey were reported at this meeting.

The characteristic of the hypothyroid patients were as follows: Most patients are aged 20-60. The majority of respondents were women. In 50%  the cause of hypothyroid was Hashimoto’s Thyroiditis.  Twenty five percent (25%) had total thyroidectomy. Fifteen percent (15%) became hypothyroid after  radioactive iodine  (I131) ablative treatment. The majority had been hypothyroid for more than 1 year. Regarding the type of treatment they received, 60% were on T4 mono-therapy, or only on the one type of thyroid hormone conventionally used to replace thyroid hormone deficiency, (generic levothyroxine, synthroid, levoxyl, unithroid, etc). Ten percent (10%) were on combination T3 and T4 (cytomel or liothyronine and levothyroxine).  Thirty percent (30%) were on desiccated thyroid or compounded thyroid preparations. These preparations are considered alternative or non-conventional therapies.  A small percentage (4%) took the supplements with tyrosine or Combinations of the above. A third, 30%, of the group have/had tried alternative thyroid preparations. The most common symptoms reported by hypothyroid patients on T4 or levothyroxine mono-therapy included the following: Weight gain, fatigue (low energy levels), mood issues, depression, and memory problems.

Patients were then asked to rate responses to questions regarding treatment of hypothyroidism using a scale of 1 to 10 ( 1 being worst and 10 being best).

When patients rated the question “How satisfied were you with your treatment?” The average level of satisfaction was 5/10, or 50%.

Patients’ ratings of “Satisfaction with their physicians” were 5-6/10 (50-60%)

Patients rating about the “Sense of knowledge of their physicians on treating thyroid disease”  5-6/10 (50-60%)

When asked “How often have you changed your physician  since you began treatment of thyroid hormone? 45% have changed physician 1-4 times seeking better care for their hypothyroid condition, and 10%  have changed physicians 10 times or more!  Less than half, 40%, remain with their physicians.

What do you think is causing your symptoms of lack of wellness? 50% felt the problem was due to the thyroid condition and/or treatment.

I was glad to see that the organizers of this conference also chose to have 3 actual patients present their hypothyroid experience to the attending group of physicians.  We were all deeply moved by the inadequacy of thyroid care and the suffering of so many patients.

In a separate presentation at the same meeting Dr. Anna Swaka reported on the fact that Quality of Life surveys show that Hypothyroid treated patients feel worse and have impaired quality of life compared with those with normal thyroid. Common issues reported by hypothyroid patients include: Losing control over physical and mental state. Feeling drained (ambiguity of the symptoms, the negotiating their sickness (“may be its me” since there is a disconnect between symptoms they are feeling and the “normal tests”), and a profound lack of validation and support which adds to the negative consequences.

It is not clear what characteristics predict who or those that will have impaired quality of life after diagnosis of hypothyroids or what are the best treatments for these individuals.  The broad realization by the medical community that hypothyroid patients have  lower quality of life and that 50-60%  lack wellness and/or are dissatisfied with their thyroid management may change care.

I have been a proponent of combination therapy and trials of different preparations for  years, and I have always tended to start my patients who undergo thyroidectomy with T4 and T3 combinations immediately after surgery.  I am including the website below for readers to access my chapter 23: Integrative Approaches to patients undergoing thyroid surgery, in the recently published book Management of thyroid nodules and differentiated thyroid cancer. Here I describe how I manage my patients.

The exciting news is that I am seeing a shift in conventional thought about thyroid replacement based on recent data and it will lead to more research on and more access to various combinations of thyroid therapies for hypothyroid patients in the future. Further a new ATA research trial is on the way to formally look at varied combinations of thyroid hormone ( t4 alone, t4 + T3, or  desiccated thyroid preparation, NatureThroid).  Hopefully there will be greater efforts to develop better future therapies, including slow release T3.  Perhaps, after seeing these data, physicians may be more willing to consider combination thyroid therapy trials for the 50% of patients who don’t feel right.

Posted in hypothyroid, Thyroid, thyroid cancer