| 2003 Thyroid Survey Results -- Part 2 | |
By Mary J. Shomon
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
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.
The tally of results of the survey are as follows:
See Page 1
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
3.25%
2.4%
Ear/Nose/Throat
19
2.81%
2.1%
Oncologist
10
1.48%
1.1%
Biological psychiatrist/Endo
1
0.15%
0.1%
What is your most recent TSH level?
Total Number of Responses / Percentage of All 907 Respondents
760
83.8%
Between 1 and 2
217
28.55%
23.9%
Between .5 and 1
169
22.24%
18.6%
less than .5
141
18.55%
15.5%
Between 2 and 3
60
7.89%
6.6%
Between 4 and 5.5
53
6.97%
5.8%
Between 5.5 and 10
47
6.18%
5.2%
Between 3 and 4
40
5.26%
4.4%
Between 10 and 25
14
1.84%
1.5%
Between 25 and 50
8
1.05%
0.9%
50 to 100
6
0.79%
0.7%
100 to 200
3
0.39%
0.3%
Above 200
1
0.13%
0.1%
Don't Know
1
0.13%
0.1%
At what TSH do you personally feel your best?
Total Number of Responses / Percentage of All 907 Respondents
734
80.9%
Other
328
44.7%
36.2%
Between .5 and 1
135
18.4%
14.9%
Between 1 and 2
120
16.3%
13.2%
less than .5
97
13.2%
10.7%
Between 2 and 3
30
4.1%
3.3%
Between 3 and 4
8
1.1%
0.9%
Between 5.5 and 10
8
1.1%
0.9%
Between 4 and 5.5
6
0.8%
0.7%
Between 10 and 25
2
0.3%
0.2%
Between 25 and 50
0
0.0%
0.0%
What symptoms do you still suffer from, despite treatment? (check all that apply)
Total Number of Responses / Percentage of All 907 Respondents
860
94.8%
I feel fatigued, exhausted more than normal
789
91.74%
87.0%
I'm unable to lose weight with proper diet/exercise
555
64.53%
61.2%
I feel run down, sluggish, lethargic
534
62.09%
58.9%
I have difficulty concentrating
510
59.30%
56.2%
My mind feels like I'm in a "fog"
501
58.26%
55.2%
I have no sex drive, or a reduced sex drive
498
57.91%
54.9%
I am gaining weight inappropriately
456
53.02%
50.3%
I have pains, aches and stiffness in various joints, hands and
437
50.81%
48.2%
I'm more forgetful lately
435
50.58%
48.0%
I feel weak
410
47.67%
45.2%
I feel like I can't get enough sleep, even though I'm sleeping
396
46.05%
43.7%
I feel depressed
390
45.35%
43.0%
My moods change easily
389
45.23%
42.9%
I can't seem to remember things
388
45.12%
42.8%
I feel cold especially in the hands and/or feet
386
44.88%
42.6%
My hair is falling out more than usual
369
42.91%
40.7%
I feel cold when others feel hot, I need extra sweaters, etc.
341
39.65%
37.6%
I feel lightheaded at times
332
38.60%
36.6%
My eyes feel sensitive to light
327
38.02%
36.1%
I have strange feelings in neck or throat, for example, a
326
37.91%
35.9%
My eyes feel gritty and dry
320
37.21%
35.3%
I have difficulty reaching orgasm
317
36.86%
35.0%
I have feelings of sadness
314
36.51%
34.6%
I have feelings of worthlessness
306
35.58%
33.7%
Other, please specify
300
34.88%
33.1%
I have weakness in muscles, esp. arms and legs
297
34.53%
32.7%
I have developed allergies, or my allergies have become worse
295
34.30%
32.5%
I am constipated, sometimes severely
280
32.56%
30.9%
My nails have been dry, brittle, and break more easily
279
32.44%
30.8%
I'm snoring more lately
279
32.44%
30.8%
I have high cholesterol
276
32.09%
30.4%
My skin is rough, coarse, dry, scaly, itchy and thick
269
31.28%
29.7%
I seem to be losing interest in normal daily activities
254
29.53%
28.0%
I have tinnitus (ringing in ears)
250
29.07%
27.6%
I have developed carpal tunnel syndrome, tarsal tunnel
248
28.84%
27.3%
I have swollen feet
245
28.49%
27.0%
I feel shortness of breath and tightness in the chest
241
28.02%
26.6%
My hair is rough, coarse dry, breaking, brittle
239
27.79%
26.4%
I'm having insomnia, can't sleep
231
26.86%
25.5%
My voice has become hoarse, husky or gravelly
225
26.16%
24.8%
My "normal" basal body temperature is lower than 97.8 to 98.2
217
25.23%
23.9%
I am having irregular menstrual cycles (longer, or heavier, or
212
24.65%
23.4%
I feel restless
210
24.42%
23.2%
I'm taking an antidepressant, but it doesn't seem to be working
201
23.37%
22.2%
I have puffiness and swelling around the eyes and face
199
23.14%
21.9%
I feel anxious, nervous
198
23.02%
21.8%
My skin is breaking out
196
22.79%
21.6%
I have a history of one or more miscarriages
180
20.93%
19.8%
I have swollen hands
179
20.81%
19.7%
I feel hot when others feel cold
168
19.53%
18.5%
I get recurrent sinus infections
166
19.30%
18.3%
I feel the need to yawn to get oxygen
165
19.19%
18.2%
I have irritable bowel syndrome, digestion problems
154
17.91%
17.0%
I have high blood pressure
143
16.63%
15.8%
I have/may have sleep apnea
132
15.35%
14.6%
I have tremors in my hands or arms
120
13.95%
13.2%
I have swollen eyelids
117
13.60%
12.9%
I have low blood pressure
116
13.49%
12.8%
I have high triglycerides
112
13.02%
12.3%
I am getting more frequent infections, or infections that last
109
12.67%
12.0%
I have diarrhea or loose bowels
108
12.56%
11.9%
My eyebrows or eyelashes are falling out
98
11.40%
10.8%
I have vertigo
98
11.40%
10.8%
I have a lump, or what appears to be some sort of fullness or
98
11.40%
10.8%
My eyes get jumpy/tics in eyes, which makes me dizzy/vertigo and
97
11.28%
10.7%
I have been diagnosed as having hypothermia (low body temperature)
80
9.30%
8.8%
I have a slow pulse
78
9.07%
8.6%
I have started to develop ovarian cysts
58
6.74%
6.4%
I have a fast pulse / tachycardia
44
5.12%
4.9%
My eyes look like they are bulging, or as if I'm staring wide-eyed
40
4.65%
4.4%
I have high cholesterol that is resistant to diet or drug
36
4.19%
4.0%
I am having trouble conceiving a baby
27
3.14%
3.0%
My "normal" body temperate is elevated
21
2.44%
2.3%
I'm running a fever for no reason
20
2.33%
2.2%
I am losing weight inappropriately
6
0.70%
0.7%
I'm unable to gain weight with proper diet/exercise
6
0.70%
0.7%
What is Your Worst Symptom?
Total Number of Responses / Percentage of All 907 Respondents
794
87.5%
Fatigue
329
41.4%
36.3%
Weight gain/inability to lose
150
18.9%
16.5%
Depression
49
6.2%
5.4%
brain fog/loss of concentration
47
5.9%
5.2%
muscle/joint pain
41
5.2%
4.5%
Other
40
5.0%
4.4%
sexual dysfunction
24
3.0%
2.6%
memory problems
22
2.8%
2.4%
Hair loss/dry hair
19
2.4%
2.1%
bowel problems (constipation, IBS, etc.)
14
1.8%
1.5%
insomnia
11
1.4%
1.2%
Anxiety
9
1.1%
1.0%
mood swings
7
0.9%
0.8%
Swelling
7
0.9%
0.8%
Body temp problems
7
0.9%
0.8%
Heart Palpitations
6
0.8%
0.7%
Dry skin/skin problems
3
0.4%
0.3%
Dizziness/lighteheaded/faint
3
0.4%
0.3%
vision/eye problems
3
0.4%
0.3%
Carpal Tunnel
3
0.4%
0.3%
Nail Problems
0
0.0%
0.0%
Note: the survey was conducted among those who volunteered to submit information, and therefore is informational, and not for statistical purposes.
All survey contents and survey results © Copyright Mary Shomon, 2002-2003.
