So I went to the urgent care because of lower abd pain, much like previous pain from cysts that burst in my ovaries.
The doc did a CT scan, and to my surprise found bilateral adrenal hyperplasia. A referral was to an endocrinologist and after the usual testing found I have ACTH-independent macrodular bilateral adrenal hyperplasia.
I do not have the outward appearance of cushings per se, but over the last year the s/s have significantly increased. (short term memory loss, achy legs, increased facial hair, gained 10lb in a month *I only eat 1 meal a day, edema, generally feel like CRAP)
the doc sent me to OHSU because my case had him perplexed. He said usually patients come in c/o of s/s of cushing’s and then tests are ran to confirm. However, in my case, cushing’s was found incidentally in testing w/o the outward appearance so much.
I’ve now met with a surgeon to discuss a bilateral adrenalectomy (which at this point I want these things OUT!) but I am worried about the recovery post-op and quality of life.
From what I have read, people seem to feel that the risk of Addison’s is better than living with cushings. Is that the general consensus? I am so overwhelmed and I am having trouble getting out of this pity party for myself.
I was diagnosed 2012 and had pituitary surgery done 2013. I am currently on medications.
I’m curious to talk with other Cushings patients. I don’t know anyone with the disease and have actually never even had a conversation with someone with cushings. It would be nice to relate with someone.
Hi my name is Nicola and I’ve been sick since October of 2017.
I kept gaining weight around my face and lower belly despite not eating due to a horrible flu and sinus infection type sickness where I hardly ate for 2 months.
My doctor gave me anti depression meds, sleep apnea tests, hiv test and told me that I was just not active or eating healthy enough. I swore I had pneumonia as I could hardly stay awake and was so so weak. I had a car accident in 7/17 and so I had prednisone and that is when my symptoms started.
I have also been on hydrocortisone trigger point and epidural injections since then and kept feeling worse and worse.
I am trying to cope with constant sinus infections and still juggle work and my family.
I am 40 lbs heavier and I choose between working out, cooking healthy or functioning at work. The cold Colorado weather is like stabbing me with a million tiny knives.
My family thinks I’m being dramatic and my boyfriend thinks that I can still work out 4-6 days a week as I did before my car accident.
At this point I’m trying not to cry or mourn the loss of my healthy lifestyle- I’m literally fighting for my life.
I’m just going to get my official diagnosis and then do all I can to recover.
God bless everyone and I pray that we get better super fast.
My cushing Dr has been a bit abrasive with me. But I will keep you posted.
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