Thanks to Beth for creating this poll for us!
A Glimpse of Cushings.. by the numbers!
by Beth Grant on Friday, April 8, 2011 at 9:38pm
I created a web-poll about 'The Face of Cushings' and had 55 of my fellow Cushies respond anonymously. The poll is still available to respond to as well, but here's the current statistics as of April 8th, 2011 - Cushings Awareness Day!
The first number after each response is the number out of 55 people who chose each response, then it's followed by the total percentage. I did forget to include some possible responses, so the poll cannot be viewed as 100% accurate, however this should give you a better picture of what we all are dealing with on a larger scale.
Please feel free to share this so more people can see some of what we deal with and perhaps raising awareness will help other people get closer to a diagnosis and faster treatment so nobody has to suffer like I have.
Thank you to all those who responded to my poll and who help to spread the word, and of course thank you to those who help support me!
-Beth
~~~
Question 1*Have you been diagnosed with Cushings?
Yes Yes 47 85%
No 2 4%
Currently Testing 6 11%
Question 2*How long have you had symptoms for?
0-1 year 0 0%
1-2 years 1 2%
2-4 years 3 5%
4-6 years 8 15%
6-10 years 9 16%
10+ years 34 62%
Question 3*Were you diagnosed with:
Cushings Disease - pituitary 35 64%
Cushings Syndrome - adrenal 7 13%
Cushings Syndrome - ectopic 0 0%
Cushings Syndrome - cyclical 6 11%
Cushings Syndrome - drug induced 0 0%
Undiagnosed 7 13%
Question 4*How old were you when you first started experiencing symptoms:
15 or younger 15 27%
16-20 years old 7 13%
21-25 years old 9 16%
26-35 years old 12 22%
36-40 years old 7 13%
41-50 years old 4 7%
50+ years old 1 2%
Question 5*How old are you now?
15 years old or younger 0 0%
15-20 years old 2 4%
21-25 years old 3 5%
26-30 years old 5 9%
31-35 years old 10 18%
36-40 years old 11 20%
41-45 years old 6 11%
46-50 years old 4 7%
50+ years old 14 25%
Question 6*How long did it take for you to be diagnosed?
Less than 1 year 7 13%
1-2 years 9 16%
2-3 years 6 11%
3-5 years 8 15%
5-10 years 9 16%
10+ years 8 15%
Undiagnosed 8 15%
Question 7*How many doctors did you see before you were diagnosed?
1 5 9%
2 2 4%
3 4 7%
4 7 13%
5+ 30 55%
Undiagnosed 7 13%
Question 8*Which of the following did you get?
High blood pressure 22 40%
Diabetes 2 4%
Both 19 35%
Neither 12 22%
Question 9*What symptoms have you experienced/are experiencing?
Weight Gain 55 6%
High Blood Pressure 42 4%
High Blood Sugar 28 3%
Extra Hair Growth 46 5%
Hair Loss 42 4%
Bone Loss/Broken Bones 28 3%
Muscle Loss/Weakness 55 6%
Fatigue 53 6%
Loss of Menses 33 4%
Stretch Marks 46 5%
Flushed Red Skin 42 4%
Buffalo Hump 47 5%
Swelling 48 5%
Hot Flashes/Sweating 49 5%
Sleep Disturbances 53 6%
Vision Problems 37 4%
Acne 34 4%
Bruising 42 4%
Body Odor 30 3%
Anxiety 46 5%
Depression 44 5%
Infertility 13 1%
Other 21
Question 10*What do you think has been the WORST symptom you've had to deal with?
Weight Gain 26 47%
High Blood Pressure 0 0%
High Blood Sugar 1 2%
Extra Hair Growth 0 0%
Hair Loss 0 0%
Bone Loss/Broken Bones 1 2%
Muscle Loss/Weakness 6 11%
Fatigue 10 18%
Loss of Menses 0 0%
Stretch Marks 0 0%
Flushed Red Skin 0 0%
Buffalo Hump 0 0%
Swelling 0 0%
Hot Flashes/Sweating 0 0%
Sleep Disturbances 2 4%
Vision Problems 0 0%
Acne 0 0%
Bruising 0 0%
Body Odor 0 0%
Anxiety 1 2%
Depression 3 5%
Infertility 0 0%
Other 5 9%
Question 11*How much weight did you gain?
0-50 lbs/0-22 kg 7 13%
51-100 lbs/23-45 kg 20 36%
101-150 lbs/46-68 kg 17 31%
151-200 lbs/69-90 kg 8 15%
200+ lbs/91+ kg 3 5%
Question 12*When do you get your best sleep?
Between 10pm - 6am 17 31%
Between 6am - 2pm 23 42%
Between 2pm - 10pm 7 13%
None of the above I'm awake all the time! 8 15%
Question 13*Have you had any complications in other systems of your body that may or may not be Cushings related?
Oral 13 7%
Gastrointestinal 33 19%
Heart 19 11%
Thyroid 28 16%
Circulatory 14 8%
Nervous System 11 6%
Mental Health 28 16%
Learning 16 9%
Other 9 5%
None of the Above 3 2%
Question 14*What testing did you have leading to a diagnosis of Cushings?
AM/PM cortisol blood draw 40 13%
24hr UFC 50 16%
10hr UFC 16 5%
11pm/midnight saliva 33 10%
High/Low Dex test 42 13%
IPSS 13 4%
ACTH Stim test 17 5%
CRH Stim test 10 3%
Head MRI/CT 49 16%
Adrenal MRI/CT 26 8%
Chest X-ray 12 4%
Other 8 3%
Question 15*Which was the worst test you had to have?
AM/PM cortisol blood draw 3 5%
24hr UFC 8 15%
10hr UFC 0 0%
11pm/midnight saliva 1 2%
High/Low Dex test 6 11%
IPSS 8 15%
ACTH Stim test 0 0%
CRH Stim test 2 4%
Head MRI/CT 12 22%
Adrenal MRI/CT 4 7%
Chest X-ray 0 0%
Other 11 20%
Question 16*Are you currently:
Working 19 35%
Going to school 3 5%
Working AND going to school 2 4%
Was working and had to quit 23 42%
Was going to school and had to quit 0 0%
Working and going to school and had to quit 2 4%
Retired 2 4% Never worked 4 7%
Question 17*What treatments have you had?
Unilateral adrenalectomy 4 4%
Bilateral adrenalectomy 13 13%
Transsphenoidal tumor removal 35 35%
Gamma Knife Surgery or similar 4 4%
Daily radiation for a period of time 1 1%
Ketoconazole 21 21%
Metyrapone 2 2%
Mitotane 0 0%
Cabergoline 1 1%
Cessation of steroid use 1 1%
Homeopathic 7 7%
Other 2 2%
Have not been treated yet 10 10%
Question 18*Were you able to be treated locally or did you have to travel?
All treatment was local 11 20%
Some treatment local traveled for other 18 33%
Had to travel for all treatment 18 33%
Have not been treated yet 8 15%
Question 19*Has your treatment been successful?
Yes I am in remission 18 33%
No I am still sick 10 18%
No I am still sick and I am testing again 4 7%
No I have had a recurrence treated again in remission 3 5%
No I have had a recurrence treated again still sick 9 16%
Have not been treated yet 11 20%
