Saturday, April 9, 2011

A Glimpse of Cushings.. by the numbers!

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%