diagnosed with cushings 2004 after being miss diagnosed 12+ years.
Head a left adrenalectomy for a benign adrenal adnoma. Been in secondary addisons since.
My right adrenal never fully recovered it makes about 4.5 cortisol. I average 12-15mgs of cortef per day.
Work full time as a nurse anesthetist, one daughter in 4th yr of college, have a very supportive husband we met in 2004 but did not marry until July 2012. Bicycling is my passion and like to cross country ski.
Interested in being a support for anyone with cushings or addisons.
Would like to compare notes with any addisions on how they adjust their steriods. I am 56yrs old.
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Jan 18, 2014 @ 18:43:09
Hi Violet,
I had two pituitary surgeries in 2009 and have just been diagnosed with a recurrence. A third surgery is not an option.
Have decided to go for the BLA as I’m 55, healthy (for now!) and want to get on with my active life as quickly as possible.
When I let my endo know my decision I also mentioned that I’d like to be recovered and ready to do my annual 80 mile bike trip in September. This concerned her and she told me that vigorous exercise will require “stress dosing”.
I was interested in your story as you’re close to my age and it sounds like you have an active lifestyle (I also love to x country ski).
My surgery will be in the next three weeks, so I don’t know how I’ll do yet, but would love to know how you handle your active interests while having secondary addisons.
Thanks so much,
Beth
Mar 24, 2014 @ 15:27:55
I am an Nurse Practitioner and recently (finally) diagnosed with Cushing’s and am having a right adrenelectomy tomorrow for a 3.6 adenoma. I am a running/biker — now a swimmer since I fractured my foot 3 times last year, thought I had hypofibrinogenelmia (excessive bruising), but found the adenoma (and put mulitple s/s together) on CT scan for what I thought was going to be a kidney stone (ended up a perforated bowel) and am still on the mend from a sigmoid colectomy done in January.
I am still able to work out about every other day and was back to work 3 weeks after the colectomy.
I am a little nervous that I may actually feel worse after the adenoma is out. Curious on recovery experiences. My biggest issues are memory and sleep for symptoms presently. How bad is the fatigue ? I was hoping to be back to work next week.
Sep 26, 2014 @ 17:22:33
Hi Violet – I am interested how you were misdiagnosed for 12 years, I think I may be in this situation. I had an abnormally high cortisol test about 5 years ago, it was 4x the normal amount. I then did a load of 24 hour urine tests, all normal, but high normal. When I look back, all the symptoms are there, nigth sweats, depression, acne, weight gain, hirsutism, hair falling out, pigmentation but I just cant get the tests to prove it. I did a 7am and 12am salivary cortisol last week, am one was 19 n/mol and the night time was 3.1 n/mol. They are both high-normal. So tired of all the tests, starting to think maybe i DONT have it and I need to let it go??