From Mary Shomon,
Your Guide to Thyroid Disease.
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From late 2001 to 2002, a survey was conducted with readers of Mary Shomon's various thyroid disease websites. Final results will be published later in 2003, but preliminary results, based on a tally of 907 respondents, are being published here, to bring increased visibility to thyroid issues to help highlight the January 2003 commemoration of Thyroid Awareness Month.

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.