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I have Cushing's (too much cortisol)

Posted by katekite on July 2, 2002, at 10:11:12

In reply to Cortisol connection, posted by jrbecker on July 2, 2002, at 2:21:57

I have high cortisol (cushing's syndrome). I encourage everyone to get checked if any psychiatric problems have worsened in the last couple years. A 24 hr urine free cortisol does not cost that much: everyone with psychiatric problems should get this screening test at least once in their life, especially if problems are worsening or getting more frequent. Be sure to do the test while you feel yucky.

It has been a year now that I've been having worsening symptoms and only in the last month has anyone taken me seriously as I finally have started to develop some clinical physical symptoms of Cushing's disease. Before this month I was seen as a head-case (which I admit I do often look like). I am still not overweight at all, but I have developed the red face and muscle weakness in my upper legs and somewhat thin skin. I finally was able to see an endocrinologist yesterday and he says this is because in many cases Cushing's begins in a cyclical or intermittent way.

Before I saw the endocrinologist there was some question that the high cortisol might be due to the anxiety or depression. My pdoc's next plan was to try ketoconazole. So yes, there are pdocs out there that will prescribe ketoconazole to people if they have high urine free cortisol. A study showed that ketoconazole helps depression in those people who have high urine free cortisol's but not those people who are not high.

For anyone interested in what to look for in early or cyclical Cushing's syndrome, here are my symptoms:

(Keep in mind that cortisol overproduction from a medical reason can follow any course it feels like: can come and go, can not progress at all for years, etc. I have no idea how long I might have had this. Psychiatric drugs definitely affected it, some making me feel better, others worse.)

Starting a year ago: Acne, waxing and waning Anxiety, intermittent depression (sometimes fine), insomnia, intermittent exhaustion (some days felt like staying bed, some days jumped up to go hiking), decreased motivation, sometimes seemed like alcohol really hit me more than usual, caffeine too (stopped caffeine), shorter periods.

Starting six months ago: diagnosed bipolar II but then 3 months later diagnosed as not that, feeling hot a lot (way too hot), attentional problems, some days feeling stupid, some days feeling really weak -- climbing stairs harder some days, peeing more some days, thinking my glasses prescription was changing but then a few days later thinking it was fine, could see my veins better than I used to but not sure, sick with colds a lot, maybe losing more hair in shower than I used to, no libido, more exhausted, eye muscle twitches (tic), feel sick sometimes when exercise -- other times fine. Stopped being able to work because things so unpredictable.

Just the last month: red face, migraines, can feel the tiny amount of caffeine from decaf coffee, no tolerance for stimulant drugs at all, sometimes high blood pressure, pulse is high in early morning when half asleep still.

The symptoms I do not have are mostly related to weight gain that people with continuous Cushing's will have: fat tummy and fat on back of neck, stretch marks. Also some people get puffy ankles.

Some myths: that people usually grow more hair, look more masculine (that is rare but if present mean you should see a doctor sooner), or that periods have to stop altogether or be irregular. That you have to be overweight. That you have to have lots of symptoms. That you have to feel sick.

My endocrinologist gave an example of someone who could have Cushing's: a marathon runner who finds they are starting to have erratic performance and increasingly long marathon times (instead of getting better with more training). That's it, no other symptoms required to have a valid reason to do a urine free cortisol. So if you have any of the symptoms, and have a doctor who says its you definitely don't have Cushing's and skipped a cortisol test, maybe reconsider your doctor choice.

Also, I had people test my thyroid repeatedly for high thyroid hormone...they kept testing even when I said look they already did this twice -- so if you've been suspected as having high thyroid hormone and not tested for cortisol, maybe check cortisol.

Last, Cushing's syndrome is rare at 1 in 100,000 people. It's good to check, but don't get carried away (and trust me, you'd rather not have this disorder).

kate


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