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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.

A summary of the survey findings is located at: http://thyroid.about.com/library/weekly/aasurveysumm.htm

The tally of results of the survey are as follows:

What is your diagnosed thyroid condition? (check all that apply)
Total Number of Responses / Percentage of All 907 Respondents	907	100.0%
Hypothyroidism	639	70.5%
Hashimoto's Disease	347	38.3%
Thyroid Nodules	129	14.2%
Goiter/Enlarged Thyroid	92	10.1%
Graves' Disease	80	8.8%
Hyperthyroidism	55	6.1%
Thyroid Cancer	40	4.4%
Other	18	2.0%
If you were diagnosed with thyroid cancer, what type of cancer?
Total Number of Responses / Percentage of All 907 Respondents	40		4.41%
Papillary	26	65.0%	2.9%
Other	8	20.0%	0.9%
Follicular	5	12.5%	0.6%
Medullary	1	2.5%	0.1%
Anaplastic	0	0.0%	0.0%
When were you diagnosed?
Total Number of Responses / Percentage of All 907 Respondents	803		88.53%
Within the past 5 years	330	41.1%	36.4%
Within the past year	255	31.8%	28.1%
More than 10 years ago	120	14.9%	13.2%
Within the past 5-10 years	98	12.2%	10.8%
What is your gender?
Total Number of Responses / Percentage of All 907 Respondents	861		94.9%
Female	831	96.5%	91.6%
Male	30	3.5%	3.3%
How old are you now?
Total Number of Responses / Percentage of All 907 Respondents	837		92.3%
40 - 50	454	54.2%	50.1%
50 - 60	150	17.9%	16.5%
30 - 40	120	14.3%	13.2%
20 - 30	70	8.4%	7.7%
60 - 70	36	4.3%	4.0%
70+	7	0.8%	0.8%
Under 15 years old	0	0.0%	0.0%
15 - 20	0	0.0%	0.0%
At what age were you diagnosed?
Total Number of Responses / Percentage of All 907 Respondents	841		92.7%
40 - 50	280	33.3%	30.9%
20 - 30	232	27.6%	25.6%
30 - 40	201	23.9%	22.2%
50 - 60	90	10.7%	9.9%
15 - 20	20	2.4%	2.2%
60 - 70	10	1.2%	1.1%
8-15 years old	7	0.8%	0.8%
70+	1	0.1%	0.1%
At birth	0	0.0%	0.0%
From 1 to 8 years old	0	0.0%	0.0%
If you are on thyroid hormone replacement, what drug are you currently taking (check all that apply)
Total Number of Responses / Percentage of All 907 Respondents	710		78.3%
Synthroid	340	47.9%	37.5%
Armour	123	17.3%	13.6%
Levoxyl	122	17.2%	13.5%
Cytomel	70	9.9%	7.7%
Unithroid	35	4.9%	3.9%
Levothroid	32	4.5%	3.5%
Thyrolar	20	2.8%	2.2%
Other	18	2.5%	2.0%
Other levothyroxine/thyroxine	14	2.0%	1.5%
Time-released compounded T3	10	1.4%	1.1%
Eltroxin	5	0.7%	0.6%
Oroxine	5	0.7%	0.6%
Euthyrox	2	0.3%	0.2%
Naturethroid	2	0.3%	0.2%
Westthroid	1	0.1%	0.1%
If you are currently hyperthyroid, what treatment are you on?
Total Number of Responses / Percentage of All 907 Respondents	25		2.8%
PTU	14	56.0%	1.5%
Homeopathic	9	36.0%	1.0%
Block replace therapy (Antithyroid drugs plus thyroid hormone replacement)	3	12.0%	0.3%
Tapazole	3	12.0%	0.3%
Sodium iodide	1	4.0%	0.1%
If you had Radioactive Iodine Treatment (RAI), when did you have it?
Total Number of Responses / Percentage of All 907 Respondents	73		8.0%
In the past year	12	16.4%	1.3%
1-3 years ago	17	23.3%	1.9%
3-5 years ago	16	21.9%	1.8%
5 - 10 years ago	11	15.1%	1.2%
10 - 20 years ago	12	16.4%	1.3%
20+ years ago	5	6.8%	0.6%
If you have had surgery on your thyroid, what sort of surgery have you had?
Total Number of Responses / Percentage of All 907 Respondents	134		14.8%
Full thyroidectomy (full removal)	37	55.2%	4.1%
Partial thyroidectomy (full removal)	15	22.4%	1.7%
Other	9	13.4%	1.0%
Removal of a nodule only	5	7.5%	0.6%
Pituitary adenoma surgically removed	1	1.5%	0.1%
Other	67		7.4%
If you had surgery, when did you have it?
Total Number of Responses / Percentage of All 907 Respondents	65		7.2%
5 - 10 years ago	15	23.1%	1.7%
1-3 years ago	14	21.5%	1.5%
In the past year	12	18.5%	1.3%
3-5 years ago	10	15.4%	1.1%
10 - 20 years ago	9	13.8%	1.0%
20+ years ago	5	7.7%	0.6%
Do you have any family members with thyroid problems? If so, please check all that apply
Total Number of Responses / Percentage of All 907 Respondents	512		56.4%
Sister(s)	230	44.92%	25.4%
Mother	229	44.73%	25.2%
Grandmother	199	38.87%	21.9%
Father	47	9.18%	5.2%
Brother(s)	29	5.66%	3.2%
Daughter(s)	28	5.47%	3.1%
Grandfather	6	1.17%	0.7%
Son(s)	5	0.98%	0.6%
Are you currently satisfied with the treatment you're receiving?
Total Number of Responses / Percentage of All 907 Respondents	748		82.5%
No	375	50.13%	41.3%
Yes	320	42.78%	35.3%
Other (please explain)	53	7.09%	5.8%
What type of physicians do you see for your thyroid care? (check all that apply)
Total Number of Responses / Percentage of All 907 Respondents	677		74.6%
General practice	445	65.73%	49.1%
Endocrinologist	380	56.13%	41.9%
Internist	105	15.51%	11.6%
Other	49	7.24%	5.4%
Holistic doctor	45	6.65%	5.0%
Ob-gyn	30	4.43%	3.3%
Osteopath	25	3.69%	2.8%
Surgeon	22