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Mary Shomon's Thyroid Survey |
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A Comprehensive Patient-Oriented Quality of Life Survey
by Mary J. Shomon
It's time that a patient-oriented quality of life thyroid survey take place, so I've decided to tackle this subject!
PLEASE take the time to cut and paste the following survey into an email, check off your responses with X's, and submit your responses by email to surveys@thyroid-info.com with the Subject: "Survey Response." Please send your survey in no later than Friday August 3, 2001. You can also print out the survey, fill it out and mail it to: Mary Shomon's Thyroid Survey, P.O. Box 0385, Palm Harbor, FL 34682
What is your diagnosed thyroid condition? (check all that apply)
__ Hashimoto's Disease
__ Hypothyroidism
__ Graves' Disease
__ Hyperthyroidism
__ Thyroid Cancer
__ Thyroid Nodules
__ Goiter/Enlarged Thyroid
__ Other _____________________________________
__ Other _____________________________________
If you were diagnosed with thyroid cancer, what type of cancer?
__ Papillary
__ Follicular
__ Medullary
__ Anaplastic
__ Other _____________________________________
__ Other _____________________________________
When were you diagnosed?
__ Within the past year
__ Within the past 5 years
__ Within the past 5-10 years
__ More than 10 years ago
What is your gender?
__ Male
__ Female
How old are you now?
__ Under 15 years old
__ 15 - 20
__ 20 - 30
__ 30 - 40
__ 40 - 50
__ 50 - 60
__ 60 - 70
__ 70+
At what age were you diagnosed?
___ At birth
___ From 1 to 8 years old
___ 8-15 years old
___ 15 - 20
___ 20 - 30
___ 30 - 40
___ 40 - 50
___ 50 - 60
___ 60 - 70
___ 70+
If you are on thyroid hormone replacement, what drug are you currently taking? (check all that apply)
__ Synthroid
__ Unithroid
__ Levoxyl
__ Levothroid
__ Eltroxin
__ Oroxine
__ Euthyrox
__ Other levothyroxine/thyroxine
__ Thyrolar
__ Cytomel
__ Time-released compounded T3
__ Armour
__ Naturethroid
__ Westthroid
__ Biotech
__ Other _____________________________________
__ Other _____________________________________
__ Other _____________________________________
If you are currently hyperthyroid, what treatment are you on?
___ Block replace therapy (Antithyroid drugs plus thyroid hormone replacement)
___ Tapazole
___ PTU
___ Other _____________________________________
___ Other _____________________________________
If you had Radioactive Iodine Treatment (RAI), when did you have it?
__ In the past year
__ 1-3 years ago
__ 3-5 years ago
__ 5 - 10 years ago
__ 10 - 20 years ago
__ 20+ years ago
If you have had surgery on your thyroid, what sort of surgery have you had?
____ Full thyroidectomy (full removal)
____ Partial thyroidectomy (full removal)
____ Removal of a nodule only
____ Other _____________________________________
____ Other _____________________________________
____ Other _____________________________________
If you had surgery, when did you have it?
_____ In the past year
_____ 1-3 years ago
_____ 3-5 years ago
_____ 5 - 10 years ago
_____ 10 - 20 years ago
_____ 20+ years ago
Do you have any family members with thyroid problems? If so, please check all that apply
__ Sister(s)
__ Brother(s)
__ Mother
__ Father
__ Grandmother
__ Grandfather
__ Daughter(s)
__ Son(s)
Are you currently satisfied with the treatment you're receiving?
___ Yes
___ No
___ Other (please explain) ___________________________________________
What type of physicians do you see for your thyroid care? (check all that apply)
___ General practice
___ Ob-gyn
___ Endocrinologist
___ Internist
___ Ear/Nose/Throat
___ Oncologist
___ Surgeon
___ Holistic doctor
___ Osteopath
___ Other _____________________________________
___ Other _____________________________________
What is your most recent TSH level?
__ less than .5
__ Between .5 and 1
__ Between 1 and 2
__ Between 2 and 3
__ Between 3 and 4
__ Between 4 and 5.5
__ Between 5.5 and 10
__ Between 10 and 25
__ Between 25 and 50
__ 50 to 100
__ 100 to 200
__ Above 200
At what TSH do you personally feel your best?
__ less than .5
__ Between .5 and 1
__ Between 1 and 2
__ Between 2 and 3
__ Between 3 and 4
__ Between 4 and 5.5
__ Between 5.5 and 10
__ Between 10 and 25
__ Between 25 and 50
__ Other _____________________________________
What symptoms do you still suffer from, despite treatment? (check all that apply)
___ I am gaining weight inappropriately
___ I am losing weight inappropriately
___ I'm unable to lose weight with proper diet/exercise
___ I'm unable to gain weight with proper diet/exercise
___ I am constipated, sometimes severely
___ I have diarrhea or loose bowels
___ I have irritable bowel syndrome, digestion problems
___ I have been diagnosed as having hypothermia (low body temperature)
___ I'm running a fever for no reason
___ My "normal" basal body temperature is lower than 97.8 to 98.2 degrees Fahrenheit
___ My "normal" body temperate is elevated
___ I feel cold when others feel hot, I need extra sweaters, etc. when
others need air conditioning
___ I feel hot when others feel cold
___ I feel cold especially in the hands and/or feet
___ I feel fatigued, exhausted more than normal
___ I feel weak
___ I feel run down, sluggish, lethargic
___ I feel like I can't get enough sleep, even though I'm sleeping the
amount I honestly need to feel well-rested
___ I feel anxious, nervous
___ I'm having insomnia, can't sleep
___ I have a slow pulse
___ I have low blood pressure
___ I have a fast pulse / tachycardia
___ I have high blood pressure
___ I have high cholesterol
___ I have high triglycerides
___ I have high cholesterol that is resistant to diet or drug treatment
____ My hair is rough, coarse dry, breaking, brittle
___ My hair is falling out more than usual
___ My eyebrows or eyelashes are falling out
___ My skin is rough, coarse, dry, scaly, itchy and thick
___ My nails have been dry, brittle, and break more easily
___ My skin is breaking out
___ My voice has become hoarse, husky or gravelly
___ I have pains, aches and stiffness in various joints, hands and feet
___ I have weakness in muscles, esp. arms and legs
___ I have tremors in my hands or arms
___ I have developed carpal tunnel syndrome, tarsal tunnel
syndrome, tendonitis, or my existing conditions are getting worse
___ I am having irregular menstrual cycles (longer, or heavier, or more frequent)
___ I am having trouble conceiving a baby
___ I have started to develop ovarian cysts
___ I have a history of one or more miscarriages
___ I feel depressed
___ I feel restless
___ My moods change easily
___ I have feelings of worthlessness
___ I have difficulty concentrating
___ I have feelings of sadness
___ I'm taking an antidepressant, but it doesn't seem to be working
___ I seem to be losing interest in normal daily activities
___ I'm more forgetful lately
___ I can't seem to remember things
___ My mind feels like I'm in a "fog"
___ I have no sex drive, or a reduced sex drive
___ I have difficulty reaching orgasm
___ My eyes feel gritty and dry
___ My eyes feel sensitive to light
___ My eyes look like they are bulging, or as if I'm staring wide-eyed
___ My eyes get jumpy/tics in eyes, which makes me dizzy/vertigo and have headaches
___ I have strange feelings in neck or throat, for example, a feeling of
"fullness," or pressure, a choking sensation, or difficulty swallowing
___ I have a lump, or what appears to be some sort of fullness or growth in my neck area
___ I have tinnitus (ringing in ears)
___ I am getting more frequent infections, or infections that last longer
___ I get recurrent sinus infections
___ I have developed allergies, or my allergies have become worse
___ I'm snoring more lately
___ I have/may have sleep apnea
___ I feel shortness of breath and tightness in the chest
___ I feel the need to yawn to get oxygen
___ I have vertigo
___ I feel lightheaded at times
___ I have puffiness and swelling around the eyes and face
___ I have swollen feet
___ I have swollen hands
___ I have swollen eyelids
___ Other, please specify ________________________________________________
___ Other, please specify ________________________________________________
___ Other, please specify ________________________________________________
___ Other, please specify ________________________________________________
___ Other, please specify ________________________________________________
___ Other, please specify ________________________________________________
___ Other, please specify ________________________________________________
Please list your top five worst symptoms that continue despite treatment, with 1 being the worst
1. _____________________________________________
2. _____________________________________________
3. _____________________________________________
4. _____________________________________________
5. _____________________________________________
If you are overweight, how many pounds over a healthy/normal weight are you at present?
___ 5 to 10 pounds
___ 10 to 20 pounds
___ 20 to 30 pounds
___ 30 to 50 pounds
___ 50 to 75 pounds
___ 75 to 100 pounds
___ 100 to 150 pounds
____ More than 150 pounds
What types of approaches have you found helpful or successful to your thyroid problem in particular
___ Diet, eating/avoiding specific foods
___ Vitamins and supplements
___ Herbal products, herbs
___ Exercise
___ Tai Chi
___ Yoga
___ Meditation, visualization
___ Prayer, religion, spirituality
___ Ayurvedic medicine
___ Traditional Chinese medicine
___ NAET
___ Biofeedback
___ Reiki
___ Massage, Trigger Point Therapy
___ Chiropractic
___ Support groups, peer support
___ Counseling, therapy
___ Other ____________________________
___ Other ____________________________
___ Other ____________________________
___ Other ____________________________
If you have managed to successfully lose weight after being hypothyroid, what approach did you use? (select all that apply)
___ Low calorie diet (general)
___ Low fat diet (general)
___ Low glycemic/low sugar diet
___ Weight Watchers
___ Jenny Craig
___ LA Weight Loss
___ Other group program in person
___ Body for Life
___ Atkins Diet
___ Sugar Busters diet
____ Larrian Gillespie (Goddess/Menopause/Gladiator Diet)
___ A physician-overseen program
___ Exercise program, self-directed
___ Online group, i.e., Ediets, Diets.com,
___ Other ____________________________
___ Other ____________________________
___ Other ____________________________
___ Other ____________________________
___ Other ____________________________
___ Other ____________________________
I currently have or in the past have been diagnosed with the following condition(s) (please check all that apply)
___ Polycystic Ovary Syndrome (PCOS)
___ Mitral Valve Prolapse Syndrome (MVPS) (heart murmur, palpitations)
___ Epstein Barr Virus (EBV)
___ Mononucleosis
___ Depression
___ Adrenal problems
___ Pituitary problems
___ Chronic Fatigue Syndrome
___ Fibromyalgia
___ Carpal Tunnel Syndrome
___ Tarsal Tunnel Syndrome
___ Plantar's Fascitis
___ Hormonal Deficiencies
___ Chronic Sinusitis
___ Asthma
___ Allergies
___ Chronic Yeast / Candidiasis
___ Anemia
___ Hemachromatosis
___ Hepatitis
___ Infertility
___ Endometriosis
___ Autoimmune Diseases (i.e, Crohn's disease, insulin-dependent
(type I) diabetes, multiple sclerosis, pernicious anemia, scleroderma,
Sjögren's syndrome, and others), please identify
________________________________________________________
________________________________________________________
________________________________________________________
Please check all that apply:
Drug Treatments
___ I have been treated with lithium, amiodarone (Cordarone) or
iodine in the past, or am currently being treated with these drugs
___ I have been self-treating with iodine, kelp, bladderwrack, and/or bugleweed
Smoking Information
___ I am currently a smoker
___ I've recently quit smoking
___ I was a heavy smoker in the past
___ I was diagnosed after stopping smoking
(please indicate how long you had quit before you were diagnosed:
____________________ (weeks/months/years)
Radiation or Radium Treatments
___ I have had radiation treatment to my head, neck or chest
___ I have had radiation treatment to treat my tonsils,
adenoids, lymph nodes, thymus gland problems, or acne
___ I have had numerous xray treatments (not dental or diagnostic
x-rays) to the head and neck
___ I had "Nasal Radium Therapy" sometime during the 1940s
through 1960s, as a treatment for tonsillitis, colds and other
ailments, or as a military submariner and/or pilot who had trouble
with drastic changes in pressure
Dietary Considerations
___ I consume substantial quantities of any of the
following foods: brussels sprouts, rutabaga, turnips,
kohlrabi, radishes, cauliflower, African cassava, millet,
babassu (a palmtree coconut fruit popular in Brazil and
Africa) cabbage and kale
___ I eat substantial quantities of soy products,
i.e., tofu, soy milk, soy protein, soy capsules, soy powders, etc.
Snakebite
___ I have had a severe or life-threatening snakebite in the past
Neck Trauma
___ I have had serious trauma to the neck, such as whiplash from a car accident
Chemical Exposure
___ I live near a plant that produces rocket fuel, or my work
exposes me to the chemical perchlorate
Nuclear Exposure
___ I lived or live near a nuclear plant
___ I lived or was visiting in or around Chernobyl during in
the weeks after the nuclear accident, which occurred on April 26, 1986
(Main countries at risk included: Belarus, Russian Federation, Ukraine.
Lesser risk to: Poland, Austria, Denmark, Finland, Germany, Greece, Italy)
___ I lived in near or downwind from the former nuclear weapons plant
at Hanford in south central Washington state in the 1940s through 1960s,
but particularly during the period 1955 to 1965.
___ I lived near or in the general region of the Nevada Nuclear Test Site
in the 1950s and 1960s. According to the National Cancer Institute, the
highest per capita thyroid doses of radiation were obtained in counties of
western states located east and north of the NTS, such as Utah, Idaho,
Montana, Colorado, and Missouri.
What are your favorite books about thyroid disease?
___ Living Well With Hypothyroidism, by Mary Shomon
___ The Thyroid Solution, by Ridha Arem
___ Solved: The Riddle of Illness, By Stephen Langer and James Scheer
___ Thyroid Power, by Richard and Karilee Shames
___ Hypothyroidism: The Unsuspected Illness, by Broda Barnes
___ The Thyroid Sourcebook, by Sara Rosenthal
___ Other, please specify ________________________________________________
___ Other, please specify ________________________________________________
___ Other, please specify ________________________________________________
___ Other, please specify ________________________________________________
___ Other, please specify ________________________________________________
___ Other, please specify ________________________________________________
Do you belong to any thyroid patient organizations?
___ Thyroid Foundation of America
___ American Foundation of Thyroid Patients
___ Thyroid Cancer Survivors Association
___ Other, please specify ________________________________________________
___ Other, please specify ________________________________________________
___ Other, please specify ________________________________________________
Do you feel that these thyroid patient groups fairly represent patients?
___ Yes
___ No, please explain
________________________________________________
________________________________________________
________________________________________________
What do you think are the best services/features are of the group(s)
you belong to?
Please specify ________________________________________________
____________________________________________________________
____________________________________________________________
____________________________________________________________
____________________________________________________________
____________________________________________________________
What do you think are the downsides or limitations of the above groups?
Please specify ________________________________________________
____________________________________________________________
____________________________________________________________
____________________________________________________________
____________________________________________________________
____________________________________________________________
What sorts of research topics do you think pharmaceutical companies
and patient organizations should be funding/studying?
___ Optimal TSH levels by gender, age and hormonal status
___ Need for T3 and role of T3 in alleviating symptoms
___ Long term safety of T3
___ Alternate delivery forms for thyroid drugs (i.e., patch, cream)
___ Time released delivery of thyroid drugs
___ Weight loss problems with thyroid disease
___ Connections between RAI and cancer
___ Long-term use of antithyroid drugs vs. RAI
___ Prevention of thyroid disease
___ Causes of thyroid disease
___ Cures for autoimmune thyroid condition
___ Other, please specify ________________________________________________
___ Other, please specify ________________________________________________
Do you feel that the thyroid pharmaceutical companies are influencing the endocrinology community?
___ No
___ Yes
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?
___ Unfair to patients
___ Favorable to patients
__ Other _____________________________________
What else would you like to add about your thyroid condition,
your doctors, the endocrinology community, thyroid drug companies,
research, symptoms, etc. that hasn't been covered here?
____________________________________________________________
____________________________________________________________
____________________________________________________________
____________________________________________________________
____________________________________________________________
____________________________________________________________
Please cut and paste the survey portion into an email, check off your responses with X's, and submit your responses by email to surveys@thyroid-info.com, no later than Friday August 3, 2001, or print out the survey, fill it out and mail it to: Mary Shomon's Thyroid Survey, P.O. Box 0385, Palm Harbor, FL 34682
.
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