Several folks have asked me about Cushing's, so here is some basic information about it. I've been diagnosed for just over a month now, and I'm still learning about it. The following is information that I've cut and pasted, so the links will take you to the source I pulled them from. Something like 90% of Cushings is caused by a tumor on the pituitary gland in the brain, with something like 8% caused by tumors on the adreanal glands (near the kidneys), the final 2% is caused by a tumor somewhere else, such as the lungs, or it is caused from being on long term steoroids, such as Prednisone.

Right now, the fatigue is opressive.

Cushing's Syndrom http://www.niddk.nih.gov/health/endo...s/cushings.htm

Cushing's syndrome is a hormonal disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol. Sometimes called "hypercortisolism," it is relatively rare and most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every million people are affected each year.

... Treatment depends on the specific reason for cortisol excess and may include surgery, radiation, chemotherapy or the use of cortisol-inhibiting drugs. If the cause is long-term use of glucocorticoid hormones to treat another disorder, the doctor will gradually reduce the dosage to the lowest dose adequate for control of that disorder. Once control is established, the daily dose of glucocorticoid hormones may be doubled and given on alternate days to lessen side effects.

(this site has some good information, I especially like the symptom list. My DH was quite shocked when he realized that out of something like 43 symptions, I have 33 of the indicators.:faint:)

http://www.wrongdiagnosis.com/c/cushings_syndrome/intro.htm

I'm sure you are terrified. Don't worry about tyring to be supportive right now. You have given so much already and perhaps you'll never know how much your words have meant. NOW is the time for you to lean on everyone else. That is what this board is all about. When you feel up to it, post for support and I know without a doubt, you will find warm arms waiting to hug you.

I read in one of your posts (correct me if I'm wrong), but I think you are in mgmt. I know for myself, it's hard sometimes not to be the one in control and have to ask for help. Don't be afraid b/c you don't have to face this alone. You are in my mind & prayers and I know that goes for a lot of others as well.

Take it one day at a time!

sniff sniff, no one's ever called me "Little C" before. Heck, the last time I was called "Little anything was when I was a Freshman in highschool...

:update: Well, I thought I would bump this.

I've been testing like a fiend since I got back from OHSU in Portland, and I got a call lastweek from my Endo there. My cortisol level on 6/21 was 214, The normal range high is 50 to 80.

So, brain surgery looks like it is going to be in my near future!

Thinking of you and wishing you the best VQ.

Myra

Vines I'm so sorry you will have to go through all this... I'm keeping you in my thoughts and prayers and wishing you through all this quickly!!! (((HUGS))) Better health is on its way... just hang in there and know that you can come here for suport anytime.. we miss you when your not here!!

So, does the cortisol level indicate that Pitunia turned back on? She had shut down a few weeks ago and you dropped weight...yes? Do I have this right?

Brain surgery...ouch. You need to keep us posted on the details. I think you are going to be just FINE! You have a wonderful future ahead of you and getting rid of this tumor is just the hump you need to get over. You are doing this!!! You are smack dab in the middle of your journey toward a healthy body, mind, and spirit. I'm so happy you are sharing your journey with us. Picture us all just cheering you on! We line the road you are taking, yelling, cheering, crying, jumping with excitement when you need it! Yay Crystal!!!!!!!!! Go, go, go, go!!!!!!!

WOW... well, if they can get in there and get Pitunia out, you should DEFINATELY have some relief!!

*hugs*

Yes Kathy, that is exactly what happens! With cyclical Cushing's, also called intermitend, the tumor turns off and on. When it turns on, it puts out cortisol, and when it shuts off, it, well, doesn't.

Right now I seem to be in a two week off and on cycle. I feel myself starting to hit a low, I know, because I'm getting fatigued again and I can see in the dark again. When Pitunia is "on" I cannot see in the dark, to the point where I can't drive at night.

So, now it's turning off again. I just hope that I don't end up with my adrenals shut down, that is frightening indeed. The next few weeks will tell.

Oh wow I'm sure surgery will go well. Technology is awesone now a days. Believe or not I just saw a segment on Mystery Diagnosis about Cushings, Monday, I think. It is such a rare disease that it is a blessing to just find the diagnosis. You are blessed in having found out what you have it. Good Luck in getting this corrected.

Vines,

Hang in there! it's very good you're on top of it, always searching, reading and looking for answers. The answer will come and your knowledge and strenght will guide you through this hard path.

Thinking of you and wishing you the best :grouphug:

niki

I *H A T E* searching for things on the web - toooooooo many choices.

Could you please explain to the weak ones (me!) what cortisol levels mean to the body?

Seems like it would be easy for the 'skilled' to find a brain tumor??

You know Crys., Im sorry that YOU are going though this, but it makes me wonder HOW many others are dealing with similear symptoms and have NO idea what is really going on in their body.

Crystal~

Please know you're in my thoughts and prayers! And keep us posted on what's happening...we care about you. Don't worry about being supportive to anyone else...let us be supportive of you. What goes around comes around, and you've been there for so many of us...now let us give some of that support back.

Hugs...

Emily

Picture us all just cheering you on! We line the road you are taking, yelling, cheering, crying, jumping with excitement when you need it! Yay Crystal!!!!!!!!! Go, go, go, go!!!!!!!

Wishing you the best and thinking about you a lot.

Vines, I am so sorry to hear of this. I haven't been here alot since I moved and I was mostly on a pitty-potty when I was. And here you are worried about being supportive for everyone else.

Take the time you need for yourself and heal. I don't know where you are with school but it seems like you might be close to finishing. Don't overdo yourself.

Hang in there and let us know what we can do to provide you support. Celeste

I *H A T E* searching for things on the web - toooooooo many choices.

Could you please explain to the weak ones (me!) what cortisol levels mean to the body?

Seems like it would be easy for the 'skilled' to find a brain tumor??

You know Crys., Im sorry that YOU are going though this, but it makes me wonder HOW many others are dealing with similear symptoms and have NO idea what is really going on in their body.

Sorry I missed this Paula, I don't come to LBT as often, and I lost this thread when I came back.

This is from Ask.com about cortisol. I've left all their hot links active for anyone who wants more information http://stress.about.com/od/stresshealth/a/cortisol.htm

Cortisol and Your Body

Cortisol is an important hormone in the body, secreted by the adrenal glands and involved in the following functions and more:

• Proper glucose metabolism
  
• Regulation of blood pressure
  
• Insulin release for blood sugar maintanence
  
• Immune function
  
• Inflammatory response

Normally, it’s present in the body at higher levels in the morning, and at its lowest at night. Although stress isn’t the only reason that cortisol is secreted into the bloodstream, it has been termed “the stress hormone” because it’s also secreted in higher levels during the body’s ‘fight or flight’ response to stress, and is responsible for several stress-related changes in the body.

Small increases of cortisol have some positive effects:

• A quick burst of energy for survival reasons
  
• Heightened memory functions
  
• A burst of increased immunity
  
• Lower sensitivity to pain
  
• Helps maintain homeostasis in the body

While cortisol is an important and helpful part of the body’s response to stress, it’s important that the body’s relaxation response to be activated so the body’s functions can return to normal. Unfortunately, in our current high-stress culture, the body’s stress response is activated so often that functioning often doesn’t have a chance to return to normal, producing chronic stress.

Higher and more prolonged levels of cortisol in the bloodstream (like those associated with chronic stress) have been shown to have negative effects, such as:

• Impaired cognitive performance
  
• Suppressed thyroid function
  
• Blood sugar imbalances such as hyperglycemia
  
• Decreased bone density
  
• Decrease in muscle tissue
  
• Higher blood pressure
  
• Lowered immunity and inflammatory responses in the body, as well as other health consequences
  
• Increased abdominal fat, which is associated with a greater amount of health problems than fat deposited in other areas of the body. Some of the health problems associated with increased stomach fat are heart attacks, strokes, the development of , higher levels of “bad” cholesterol (LDL) and lower levels of “good” cholesterol (HDL), which can lead to other health problems!

To keep cortisol levels healthy and under control, the body’s relaxation response should be activated after the fight or flight response occurs. You can learn to relax your body with various stress management techniques, and you can make lifestyle changes in order to keep your body from reacting to stress in the first place. The following have been found by many to be very helpful in relaxing the body and mind, aiding the body in maintaining healthy cortisol levels:

• Guided Imagery
  
• Journaling
  
• Self-Hypnosis
  
• Exercise
  
• Yoga
  
• Listening to Music
  
• Breathing Exercises
  
• Meditation
  
• Sex
  
• Other Techniques

Cortisol secretion varies among individuals. People are biologically ‘wired’ to react differently to stress. One person may secrete higher levels of cortisol than another in the same situation. Studies have also shown that people who secrete higher levels of cortisol in response to stress also tend to eat more food, and food that is higher in carbohydrates than people who secrete less cortisol. If you’re more sensitive to stress, it’s especially important for you to learn stress management techniques and maintain a low-stress lifestyle.