And It's About Time There Was Some Support For Cushing's!
My endocrinologist here in Austin has suspected that I have Cushing's since I began to see her last fall. I have suspected it for long before that. I have most of the "trademark" symptoms of Cushing's but my Cortisol levels keep coming back normal.
I talked to one person on a Cushing's message board who had the same symptoms as I do, had normal lab results, but she was not diagnosed until they finally did a biopsy of her pituitary gland.
In 2000 I gained 100 pounds in 5 months (145 pounds to 245 pounds, I am 5'4"). I did not change my diet or lifestyle during this time. I became fatigued all of the time, started feeling depressed, and started developing severe sinus infections often (every 3-6 weeks) and also suffers from frequent unusual infection that are slow to heal.
Since this time in 2000 I have been looking for answers. I have been hypothyroid since 1998, but my TSH levels have been well-regulated since my diagnosis and my levels were tested repeatedly during this period of weight gain. Still my family doctor attributed my symptoms to the hypothyroidism and switched my medication to Armour. The symptoms did not improve and my depression worsened. My weight has stayed around the same (240 give or take 10 pounds) since the initial weight gain, but my face and abdomen seems to go through periods of time where they are drastically different sizes dispite my weight being the about the same.
Over the past year my symptoms have worsened to the point that whatever is wrong is seriously affecting my life and my work. I am very fatigued all of the time, I have trouble even walking a flight of stairs. I have always been a very active person but now I am just so tired I can't find the energy to be active anymore. Also my abdomen and my face have gotten larger although my weight has stayed the same. I can no longer fit into pants I could wear six months ago even though my weight is the same. My lower legs and arms seem to be getting skinnier although my abdomen and face keep getting larger. I also bruise easily. I get large bruises just from bumping something. I have bruises all over my body. Over the past year I have developed a prominent hump on my back. I have very dark circles under my eyes. My periods are irregular. I get frequent sinus infections and bronchitis. I get frequent yeast infections. Whenever I have any sort of wound (scrapes, bumps, etc.) it takes forever to go away. I have a scrape on my knee that happened three weeks ago. It was just a small scrape but it is still there. I had pneumonia last fall. My hair is thinning around my temples. My blood pressure swings from high-ish (148/90) to low-ish (110/70), and so do my cholesterol levels (especially triglycerides).
I become confused and spatially disoriented easily. I will be driving somewhere and forget where I am. I have memory loss. I can't remember things people tell me a day ago, or sometimes even five minutes ago. My joints and back hurt. I was told I have arthritis in my feet and in my neck. I am only 28 years old--I should not have arthritis and a hump on my back!
The only thing my endocrinologist has found via lab tests has is that there are abnormal testosterone levels coming from my adrenal glands. (This was differentiated from other sources it could be coming from by a three-day dexamethasone suppression test. She has done lots of blood work and one 24-hr urine collection. She did not test my ACTH level during the dex test. She did test it several months ago (just the level, not with a suppression test) and it was within the normal range. She has also not done any scans of my adrenals or pituitary. My endocrinologist is a great doctor, but I believe that this case may be beyond her level of expertise. I don't think she has ever seen anything like me before.
My endocrinologist says that I look like a Cushing's patient and I have all the symptoms of Cushing's, but she is confused because my cortisol levels keep coming back normal. She suspects that it may be Cyclical Cushing's--this does follow my symptoms, as I seem to "swell up" every couple of months. Her latest answer is to give me another 24 hour urine test kit and I am supposed to take the urine collection when my symptoms seem to flare up. She wanted to put me on a daily dose of dexamethasone to suppress the testosterone levels and see if my symptoms got better. I refused though, because just during the 3-day dex test when I took this medication I swelled up, was irritable, more fatigued than usual, and I also developed a sinus infection during these three days and consequently a yeast infection from the antibiotics used to treat the sinus infection.
I am very frustrated, I am in pain, I am so tired that I am finding it difficult to keep up at work....
I have finally been diagnosed! Cyclical Cushing's. Still no surgery date, have to get some more tests done first, but I am hopeful that it won't be too much longer. I saw a new local doctor in Houston (who was awesome) and he would like me to start on Ketoconazole to help with my symptoms I am also currently working with Dr. L. in Oregon for testing, and if I have surgery it will be there.
I went to OHSU for a week of testing in May and I was very impressed with the whole team there and with the facility itself.
I had pituitary surgery November 2006. An 8mm encapsulated pituitary tumor was removed. No post-op crash, so I had a BLA December 2006. Both surgeries were in Seattle. I am now free of Cushing's and am on the road to recovery!
It's been 1 year since my surgeries now and I am doing great! I do have diabetes now as a post-op complication though. Unfortunately it looks like it's here to stay. But I have lost 40 pounds so far and am still losing, I feel and look so much better! I recently started growth hormone shots (my body was making almost none) and they have really made a difference. I continue to feel better and better and I have gone back to work fulltime. I'm starting to get my old life back little by little.
Monica was the subject of a Live Interview March 27, 2008 in the Cushings Help Voice Chat / Podcast series. Archives are available after the chat.
Monica's husband,was the subject of a Live Interview in the Cushings Help Voice Chat / Podcast series May 1, 2008. He talked about Cushing's from the spouse/caretaker point of view
He is also Monica's producer/ manager. He has been a tour manager and sound engineer in the music industry his whole life and has worked with many of the greats in the industry.
For the two years during Monica's diagnosis and surgeries he worked from home as a computer programmer so that he could take care of Monica.
Monica and Kevin were married two years ago, just before Monica's pituitary surgery. Monica and Kevin spent their honeymoon in Portland at OHSU doing one of her several "camp cushie" trips.
Monica returned to another Live Interview in the Cushings Help Voice Chat / Podcast series. She talked about the challenges she's faced maintaining her music career while in testing and treatment.