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Cushing's

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

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This is a rare cross-post for me. The original is on a NC state support forum thread http://lapbandtalk.com/showthread.php?p=269361#post269361 . I figured that I would add it to this greater Cushing's post, just to keep everything all in the same place.

Q: I'm just wondering if we know why we don't lose weight. Why we can't lose weight? As you know, I spent a month at less than 700 calories a day, an managed an impressive 1.5 pounds lost. Which I promply gained when I went to 1000 calories a day. Can someone point me to some links? (and also hopefully break it down so I can understand it when I'm in a brain fog.)

Is it true that excersize increases cortisol levels or production?

This is the information I got from my Cushing's board http://cushings.invisionzone.com/index.php?showtopic=17111&st=0&gopid=145400entry145400 (might need to register to view the thread.)

The basic thing is that our bodies are designed to compensate when we're under stress. Our bodies haven't changed much since our caveman days. So when our bodies are under stress, like from a famine, the cortisol response kicks in and makes sure we have plenty of energy stores (fat) available to help us survive, just in case we need an energy boost while being chased by a sabertooth tiger. With Cushing's, of course, we have a source of stress hormone operating independently of our circumstances and it doesn't shut off. Our entire digestive and metobolic system changes. food, any food, is sent to our fat stores. Around our trunk/upper body is the most efficient place to store it for "easy access". We then receive all our energy from the breakdown of muscle. If not enough food is consumed for our needs, then the body will turn the muscle itself into fat.

Some people have been able to lose weight with Cushing's. It may have to do with intermittant cortisol secretion, so their bodies get a break once in awhile. Severe dieting (like a 700 cal. program) can actually make things worse. For example, anorexics have high cortisol levels. If their cortisol didn't kick in, they would die much sooner from starvation.

Wow, I don't know about anyone else, but this has been a lightbulb moment for me.

Ah-HAH This makes sense.

This headache that I've got that WILL NOT go away, started in Nov, the month I was *super* restricted with my band. This is also when my sysmptoms started to be real. I've always had the sysmptoms, always had these stretches where I would sudenly gain weight but otherwise feel prett good, vs long stretches where I felt practically imoblinzed with Fibro...

  • 5 weeks later...
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So, if I can get ahold of my doctor today, it looks like I"ll be in surgery

next week. But this will just be the first of hopefully, just one more

surgery to remove the tumor. This first surgery will be a CSS, a cavernous sinus sampling, where they thread a cathiter up through my entire body, from groin to brain, gathering samples along the way.

http://abclocal.<wbr>go.com/wjrt/<wbr>story?section=<wbr>healthfirst&<wbr>id=4511973 is a link

to a news broadcast of one woman's experience with Cushing's. I met the woman in the story on Tuesday, she's lost about 60 pounds since this video segment was filmed.

  • 3 weeks later...
  • 1 year later...

I find out today if I have Cushings. The sad thing is I don't know what I am more afraid of, the disease, or not having anything wrong.

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