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by Mary Shomon

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:

http://thyroid.about.com/library/weekly/aasurvey.htm

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.

Interesting, while many conventional doctors report that hypothyroidism causes no more than five to ten pounds of weight gain, only 8% of the respondents said they were 5-10 pounds overweight.

Of the 334 people who indicated that they have had success losing weight after being hypothyroid:

53% recommended an exercise program, self-directed

40% suggested a general low calorie diet (general)

27% recommended a general low fat diet

27% recommended Weight Watchers

24% suggested a low glycemic/low sugar diet

Related Conditions

Many people with thyroid conditions also have other conditions. Of the 58% of people who reported having other conditions:

81% had allergies

63% had depression

40% had chronic sinusitis

34% had anemia

30% had carpal tunnel syndrome

27% had asthma

23% had endometriosis

22% had Mitral Valve Prolapse Syndrome (MVPS)

20% had fibromyalgia

19% had hormonal deficiencies

16% had mononucleosis

15% had chronic yeast / candidiasis

15% had Polycystic Ovary Syndrome (PCOS)

Smoking Information                

11% of all respondents were diagnosed after stopping smoking

Almost 9% are currently smokers.

Almost 8% were heavy smokers in the past.

4% recently quit smoking

Among those who smoked, more than half were diagnosed within a year of quitting smoking.

Neck Trauma

20% of all respondents have had a serious trauma to the neck, such as whiplash from a car accident

Favorite Books

About a third of respondents offered information on their favorite books about thyroid disease:

30% of all respondents recommended: Living Well With Hypothyroidism, by Mary Shomon

13% recommended The Thyroid Solution, by Ridha Arem

7% recommended Hypothyroidism: The Unsuspected Illness, by Broda Barnes

Almost 7% recommended The Thyroid Sourcebook, by Sara Rosenthal

6% recommended Thyroid Power, by Richard and Karilee Shames

And 5% recommended Solved: The Riddle of Illness, By Stephen Langer and James Scheer

Thyroid Groups and Organizations

Only 78, or 8.6% of respondents, belong to any thyroid patient organizations.

Among them:

32% indicated membership in the Thyroid Foundation of America

Almost 18% are members of the Thyroid Cancer Survivors Association

10% belong to local support groups

5% belong to Thyroid UK

5% belong to the National Graves Disease Foundation

Among those who responded to the question of whether these thyroid patient groups fairly represent patients, 60% said yes, and 40% said no.

The best services and features of the groups are, according to respondents:

Information, 94%

Support Groups, 60%

News/Newsletters, 26%

Web Site, 23%

Lists of doctors, 23%

Members feel that there are some downsides or limitations of the above groups? These include:

40% believe they don't provide enough information on alternative treatments

32 % believe they give false information about treatment options/drugs

18% believe that there is a drug company funding bias

7% say that the group provides no one-on-one interactions

Research Agenda

Two-thirds of all surveyed responded regarding what sorts of research topics pharmaceutical companies and patient organizations should be funding/studying. These include:

98% believe that research should study weight loss problems with thyroid disease

96% want to see more studies on the need for T3 and role of T3 in alleviating symptoms

93% want to see study of cures for autoimmune thyroid conditions

89% want research into causes of thyroid disease

87% want research into long term safety of T3     

85% want research into prevention of thyroid disease

77% want research into optimal TSH levels by gender, age and hormonal status

Drug Company Influence

When asked if the thyroid pharmaceutical companies are influencing the endocrinology community, 83% of those responding said yes, and 16 percent said no.

Among those who feel that there is influence, 95% believe that the influence is unfair to patients and unduly favorable to the drug companies. 3% believe that it is favorable to patients.

All survey contents and survey results © Copyright Thyroid-info.com, Mary Shomon, 2002-2003. First posted January 13, 2003.