Thyroid Patient Survey Results 2003 / Thyroid Disease Information Source

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First Large-Scale Quality of Life Survey of Thyroid Patients Conducted
Mary Shomon's Look at Patients' Unrelieved Symptoms, Weight Problems, Attitudes Toward Patient Organizations, Smoking Behavior, Effective Treatments and Solutions Published

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 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 ski/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%

If you are overweight, how many pounds over a healthy/normal weight are you at present?

Total Number of Responses / Percentage of All 907 Respondents 759 83.7%

30 to 50 pounds 189 24.9% 20.8%

10 to 20 pounds 150 19.8% 16.5%

50 to 75 pounds 138 18.2% 15.2%

20 to 30 pounds 103 13.6% 11.4%

75 to 100 pounds 76 10.0% 8.4%

5 to 10 pounds 62 8.2% 6.8%

100 to 150 pounds 40 5.3% 4.4%

More than 150 pounds 1 0.1% 0.1%

What types of approaches have you found helpful or successful to your thyroid problem?

Total Number of Responses / Percentage of All 907 Respondents 645 71.1%

Exercise 520 80.62% 57.3%

Diet, eating/avoiding specific foods 388 60.16% 42.8%

Vitamins and supplements 322 49.92% 35.5%

Herbal products, herbs 210 32.56% 23.2%

Prayer, religion, spirituality 125 19.38% 13.8%

Massage, Trigger Point Therapy 99 15.35% 10.9%

Support groups, peer support 89 13.80% 9.8%

Chiropractic 76 11.78% 8.4%

Meditation, visualization 75 11.63% 8.3%

Yoga 67 10.39% 7.4%

Counseling, therapy 60 9.30% 6.6%

Other 60 9.30% 6.6%

Tai Chi 34 5.27% 3.7%

Traditional Chinese medicine 22 3.41% 2.4%

Reiki 17 2.64% 1.9%

Accupuncture 12 1.86% 1.3%

NAET 3 0.47% 0.3%

Ayurvedic medicine 2 0.31% 0.2%

Biofeedback 2 0.31% 0.2%

If you have managed to successfully lose weight after being hypothyroid, what approach did you use? (select all that apply)

Total Number of Responses / Percentage of All 907 Respondents 334 36.8%

Exercise program, self-directed 177 53.0% 19.5%

Low calorie diet (general) 132 39.5% 14.6%

Low fat diet (general) 89 26.6% 9.8%

Weight Watchers 89 26.6% 9.8%

Low glycemic/low sugar diet 80 24.0% 8.8%

Other 54 16.2% 6.0%

Atkins Diet 40 12.0% 4.4%

A physician-overseen program 12 3.6% 1.3%

The Zone 9 2.7% 1.0%

Sugar Busters diet 7 2.1% 0.8%

Larrian Gillespie (Goddess/Menopause/Gladiator Diet) 7 2.1% 0.8%

Carbo Addicts Diet 6 1.8% 0.7%

Other group program in person 3 0.9% 0.3%

Body for Life 3 0.9% 0.3%

Online group, i.e., Ediets, Diets.com, 3 0.9% 0.3%

Suzanne Somers 3 0.9% 0.3%

LA Weight Loss 2 0.6% 0.2%

Jenny Craig 1 0.3% 0.1%

I currently have or in the past have been diagnosed with the following condition(s) (please check all that apply)

Total Number of Responses / Percentage of All 907 Respondents 525 57.9%

Allergies 425 81.0% 46.9%

Depression 332 63.2% 36.6%

Chronic Sinusitis 210 40.0% 23.2%

Anemia 177 33.7% 19.5%

Carpal Tunnel Syndrome 157 29.9% 17.3%

Asthma 144 27.4% 15.9%

Endometriosis 123 23.4% 13.6%

Mitral Valve Prolapse Syndrome (MVPS) (heart murmur, 116 22.1% 12.8%

Fibromyalgia 105 20.0% 11.6%

Hormonal Deficiencies 98 18.7% 10.8%

Mononucleosis 86 16.4% 9.5%

Chronic Yeast / Candidiasis 79 15.0% 8.7%

Polycystic Ovary Syndrome (PCOS) 77 14.7% 8.5%

Infertility 66 12.6% 7.3%

Chronic Fatigue Syndrome 65 12.4% 7.2%

Adrenal problems 48 9.1% 5.3%

Plantar's Fascitis 39 7.4% 4.3%

Epstein Barr Virus (EBV) 34 6.5% 3.7%

Pituitary problems 14 2.7% 1.5%

Hepatitis 12 2.3% 1.3%

Tarsal Tunnel Syndrome 9 1.7% 1.0%

Hemachromatosis 1 0.2% 0.1%

Autoimmune Diseases 93 17.7% 10.3%

Hashimoto's 15 2.9% 1.7%

Diabetes 9 1.7% 1.0%

Rheumatoid Arthritis 6 1.1% 0.7%

Lupus 5 1.0% 0.6%

Sjogren's 4 0.8% 0.4%

Raynaud's 4 0.8% 0.4%

Eczema 9 1.7% 1.0%

Pernicious anemia 9 1.7% 1.0%

Crohn's 5 1.0% 0.6%

Psoriasis 7 1.3% 0.8%

Undisclosed autoimmune conditions 7 1.3% 0.8%

Hypoglycemia 3 0.6% 0.3%

Multiple Sclerosis 2 0.4% 0.2%

Vitiligo 2 0.4% 0.2%

Diverticulitis 2 0.4% 0.2%

Turner's Syndrome 1 0.2% 0.1%

Sweet's Syndrome 1 0.2% 0.1%

RSD, Med-related Cushing's Syndrome 1 0.2% 0.1%

Drug Treatments

Total Number of Responses / Percentage of All 907 Respondents 31 3.4%

I have been self-treating with iodine, kelp, bladderwrack, and/or bugleweed 18 58.1% 2.0%

I have been treated with lithium, amiodarone (Cordarone) or iodine in the past, or am currently being treated with these drugs 13 41.9% 1.4%

Smoking Information

Total Number of Responses / Percentage of All 907 Respondents 288 31.8%

I was diagnosed after stopping smoking 100 34.7% 11.0%

I am currently a smoker 79 27.4% 8.7%

I was a heavy smoker in the past 70 24.3% 7.7%

I've recently quit smoking 39 13.5% 4.3%

How long after stopping where you diagnosed?

1 year 22 22.0% 2.4%

6 months 20 20.0% 2.2%

9-10 years 17 17.0% 1.9%

1-5 months 11 11.0% 1.2%

6-8 year 11 11.0% 1.2%

10-15 years 10 10.0% 1.1%

9 months 8 8.0% 0.9%

20+ years 8 8.0% 0.9%

3-5 years 6 6.0% 0.7%

16-19 years 5 5.0% 0.6%

2 years 4 4.0% 0.4%

122 1.22

Radiation or Radium Treatments

Total Number of Responses / Percentage of All 907 Respondents 36 4.0%

I have had numerous xray treatments (not dental or diagnostic 27 75.0% 3.0%

I have had radiation treatment to my head, neck or chest 20 55.6% 2.2%

I have had radiation treatment to treat my tonsils, 10 27.8% 1.1%

I had "Nasal Radium Therapy" sometime during the 1940s 0 0.0% 0.0%

Neck Trauma

I have had serious trauma to the neck, such as whiplash from a car accident 179 100.0% 19.7%

Chemical Exposure

I live near a plant that produces rocket fuel, or my work exposes me to the chemical perchlorate 11 100.0% 1.2%

Nuclear Exposure

Total Number of Responses / Percentage of All 907 Respondents 48 5.3%

I lived or live near a nuclear plant 24 50.0% 2.6%

Lived near Hanford 9 18.8% 1.0%

Near Nevada 8 16.7% 0.9%

I lived or was visiting in or around Chernobyl during in 4 8.3% 0.4%

Downwind of bombing range on Viques 1 2.1% 0.1%

Exposed to cobalt radiation therapy 1 2.1% 0.1%

Moved to Hanover PA 2mos after 3-Mile Island mishap 1 2.1% 0.1%

What are your favorite books about thyroid disease?

Total Number of Responses / Percentage of All 907 Respondents 310 34.2%

Living Well With Hypothyroidism, by Mary Shomon 276 89.0% 30.4%

The Thyroid Solution, by Ridha Arem 120 38.7% 13.2%

Hypothyroidism: The Unsuspected Illness, by Broda Barnes 60 19.4% 6.6%

The Thyroid Sourcebook, by Sara Rosenthal 59 19.0% 6.5%

Thyroid Power, by Richard and Karilee Shames 55 17.7% 6.1%

Solved: The Riddle of Illness, By Stephen Langer and James Scheer 45 14.5% 5.0%

Screaming to be Heard 6 1.9% 0.7%

How I Reversed My Hashimot's Thyroiditis 4 1.3% 0.4%

Your Thyroid: A Home Reference 3 1.0% 0.3%

Is Your Thyroid Making You Fat 3 1.0% 0.3%

Thyroid & Its Diseases 1 0.3% 0.1%

Thyroid Tears 1 0.3% 0.1%

Why Am I So Tired 1 0.3% 0.1%

The Thyroid Guide 1 0.3% 0.1%

Your Thyroid - Wood and Cooper 1 0.3% 0.1%

Could It Be My Thyroid 1 0.3% 0.1%

Thyroid Disease: The Facts 1 0.3% 0.1%

Sick and Tired of Being Sick and Tired 1 0.3% 0.1%

The Metabolic Treatment of Fibromyalgia 1 0.3% 0.1%

From Fatigue to Fantastic 1 0.3% 0.1%

Do you belong to any thyroid patient organizations?

Total Number of Responses / Percentage of All 907 Respondents 78 8.6%

Thyroid Foundation of America 25 32.1% 2.8%

Mary's Site (these were write in answers, not an official "organization") 25 32.1% 2.8%

Thyroid Cancer Survivors Association 14 17.9% 1.5%

Local Support Group 8 10.3% 0.9%

Thyroid UK 4 5.1% 0.4%

National Graves Disease Foundation 4 5.1% 0.4%

American Foundation of Thyroid Patients 2 2.6% 0.2%

British Thyroid Foundation 2 2.6% 0.2%

The Thyroid Society 2 2.6% 0.2%

Broda Barnes Institute 2 2.6% 0.2%

Do you feel that these thyroid patient groups fairly represent patients?

Total Number of Responses / Percentage of All 907 Respondents 164 18.1%

Yes 98 59.8% 10.8%

No, please explain 66 40.2% 7.3%

What do you think are the best services/features are of the group(s) you belong to?

Total Number of Responses / Percentage of All 907 Respondents 35 3.9%

Information 33 94.3% 3.6%

Support Groups 21 60.0% 2.3%

News/Newsletters 9 25.7% 1.0%

Web Site 8 22.9% 0.9%

List of doctors 8 22.9% 0.9%

What do you think are the downsides or limitations of the above groups? Please specify

Total Number of Responses / Percentage of All 907 Respondents 28 3.1%

Not enough info on alternative treatments 11 39.3% 1.2%

Give false info about treatment options/drugs 9 32.1% 1.0%

Drug Company funding bias 5 17.9% 0.6%

No one-on-one interactions 2 7.1% 0.2%

no phone numbers for help/advice 1 3.6% 0.1%

Not enough professional input 1 3.6% 0.1%

Cannot prescribe medications 1 3.6% 0.1%

Lack of funds and political power 1 3.6% 0.1%

What sorts of research topics do you think pharmaceutical companies and patient organizations should be funding/studying?

Total Number of Responses / Percentage of All 907 Respondents 585 64.5%

Weight loss problems with thyroid disease 573 97.9% 63.2%

Need for T3 and role of T3 in alleviating symptoms 560 95.7% 61.7%

Cures for autoimmune thyroid condition 541 92.5% 59.6%

Causes of thyroid disease 519 88.7% 57.2%

Long term safety of T3 511 87.4% 56.3%

Prevention of thyroid disease 497 85.0% 54.8%

Optimal TSH levels by gender, age and hormonal status 448 76.6% 49.4%

Time released delivery of thyroid drugs 256 43.8% 28.2%

Alternate delivery forms for thyroid drugs (i.e., patch, cream) 240 41.0% 26.5%

Connections between RAI and cancer 99 16.9% 10.9%

Long-term use of antithyroid drugs vs. RAI 80 13.7% 8.8%

Other (summarized) 35 6.0% 3.9%

Alternate medications/treatments 16 2.7% 1.8%

Thyroid and infertility 5 0.9% 0.6%

Self-Testing 4 0.7% 0.4%

Links with other problems 4 0.7% 0.4%

Do you feel that the thyroid pharmaceutical companies are influencing the endocrinology community?

Total Number of Responses / Percentage of All 907 Respondents 549 60.5%

Yes 458 83.4% 50.5%

No 91 15.5% 10.0%

If you feel that there is influence, do you feel that it is unfair, or unduly favorable to the drug companies, or in favor of patients?

Total Number of Responses / Percentage of All 907 Respondents 495 54.6%

Unfair to patients 468 94.5% 51.6%

Favorable to patients 15 3.0% 1.7%

Not Sure 12 2.4% 1.3%

Note: the survey was conducted among those who volunteered to submit information, and therefore is informational, and not for statistical purposes.

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