This is the first large-scale quality of life survey of thyroid patients, and the first to look at critical patient concerns such as unrelieved symptoms, weight problems, attitudes toward patient organizations, smoking behavior, and effective treatments and solutions.
The tally of results of the survey are located online at:
[link url=http://thyroid.about.com/library/weekly/aasurvey.htm]http://thyroid.about.com/library/weekly/aa survey.htm[/link]
A summary of key findings is included here.
Key Demographics
Among those surveyed, almost 97% were women.
More than half of those surveyed are currently in the 40-50 year old age range. Almost 17% are 50-60, and 13% are 30-40.
Among those surveyed, approximately a third were diagnosed in the 40-50 age range. 26% were diagnosed in the 20-30 range, and 22% in the 30-40 range.
Hypothyroidism
Of the 907 people surveyed, more than 70% were hypothyroid, with 40% identifying themselves as having the autoimmune condition Hashimoto's Disease.
Nodules & Goiter
Thyroid nodules and goiter (an enlarged thyroid) were the next most common problem, affecting 14% and 10% of those surveyed respectively.
Thyroid Cancer
A total of 40 (4.4%) of those surveyed had thyroid cancer, and 65% of those with cancer indicated they had the papillary thyroid cancer.
Graves/Hyperthyroidism
Almost 3% (25) of the respondents are currently hyperthyroid. Among those 25 respondents who are currently hyperthyroid, 56% are using PTU, 36% are using homeopathic remedies, 12% are on block replace therapy, and 12% are using Tapazole.
A total of 73 respondents, or 8%, had Radioactive Iodine Treatment. More than 60% had it within the past 5 years.
Thyroid Surgery
A total of 134 respondents, or almost 15%, have had thyroid surgery. Among them, more than half had a full thyroidectomy. 22% had a partial thyroidectomy.
Interesting, thyroid surgery appears to have been more common among respondents in the past, as 45% of respondents had their surgery more than five years ago.
Family Relationships
More than half of all respondents, 56.4% specifically, have family members with thyroid problems.
Among those who indicated they had family members with thyroid problems, most common were Sisters, Mothers and Grandmothers.
Thyroid Drugs and Treatments
Among the 710 respondents taking thyroid hormone replacement, almost 48% are taking Synthroid. More than 17% are taking Armour, and 17% are taking Levoxyl. 10% take the T3 drug Cytomel.
Of the 645 people who suggested approaches they have found helpful or successful in dealing with a thyroid problem:
80% suggested exercise
60% suggested diet, eating/avoiding specific foods
50% suggested vitamins and supplements
33% suggested herbal products, herbs
20% turned to prayer, religion, spirituality
15% suggested massage, trigger point therapy
14% suggested support groups, peer support
Treatment Satisfaction
Of the 748 respondents who answered whether they were satisfied with the treatment they are receiving, more than half indicated that they are not satisfied. Almost 43% said that they are satisfied.
Among the 760 who provided their TSH level at present, almost 29% indicated that it is between 1 and 2, 22 % were between .5 and 1, 18.6% were less than .5.
Many patients still suffer from symptoms despite treatment. Among the 860 people responding to this question:
Almost 92% feel fatigued, exhausted more than normal
65% are unable to lose weight with proper diet/exercise
62% feel run down, sluggish, lethargic
60% have difficulty concentrating
58% have no sex drive, or a reduced sex drive
51% have pains, aches and stiffness in various joints
45% feel depressed
43% are experiencing hair loss
38% have eyes that are light sensitive, gritty or dry feeling
38% have strange feelings in neck or throat
When asked what their worst symptom is, 794 respondents offered answers. Fatigue was the most often cited, followed by weight gain/inability to lose weight, depression, brain fog/loss of concentration, and muscle/join pain.
Doctors
Two thirds of those responding said they see a general practitioner for their thyroid care. 56% indicate they see an endocrinologist.
Weight Problems
Almost 84% of respondents indicated that they are overweight. Among them:
25% indicated that they are 30 to 50 pounds overweight.
20% said they are 10 to 20 pounds overweight.
18% said that they are 50 to 75 pounds overweight
14% indicated that they are 20 to 30 pounds overweight.
