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I had successful surgery in May 2006 to remove a pituitary tumor. Following surgery I was informed that although 75% of my pituitary gland had been removed, it could still function normally. After 18 months of steroid taper my endocrinologist informed me that my hypothalamic pituitary adrenal axis was functioning normally and that I could discontinue taking steroids altogether. Shortly after stopping the cortisone, I had an episode of acute adrenal insufficiency. My symptoms included nausea, vomiting, drenching sweats without fever, palpitations. The endocrinologist put me back on low doses of cortisone but I continued to have symptoms such as lack of energy and generalized pain. The cortisone was discontinued gradually over two months.
Throughout the year, in addition to being tired and having generalized pain, I developed severe sensitivity to cold, lack of appetite, weight loss, shortness of breath and palpitations. At this point I decided to consult with a team of doctors at Johns Hopkins who specialize in pituitary issues and do research as well. After an evaluation and blood tests, my doctor, Dr. Robert Salvatori diagnosed me with partial hypopitituitarism and prescribed low doses of cortisone and thyroid hormones. In the near future, I will also take growth hormones. I will have to take these medications for the rest of my life. Within two days of restarting the cortisone, I felt significantly better, but I still lack energy/interest, have low muscle mass and redistribution of fat around my abdomen; hopefully these symptoms will be addressed with growth hormones treatment.
Partial hypopituitarism means that I have a low functioning pituitary gland which is unable to fully regulate the many hormones that control various functions and organs within the body. Whenever there is “manipulation” of the pituitary gland, surgery or radiation for example, doctors should consider the possibility of a low functioning pituitary and monitor symptoms of adrenal, thyroid, growth hormones and other hormones deficiencies very closely. In my case the tests were borderline normal, but the symptoms were there; I encourage you if you don’t feel “right”, to remind your doctor you had pituitary surgery and that he/she should treat the symptoms, not just look at the numbers. There is a very informative article by Dr. David Cook on the CSRF website on growth hormones deficiency. He states: “whenever pituitary surgery or radiation is performed, there is a risk that normal secretion of pituitary hormones will be affected…”
Looking back, this statement makes a lot of sense and still helps me understand how and why my entire hormonal system was affected by the surgery; I also understand how to better take care of myself. If I have symptoms that resemble the flu, I am more aware that it could be a response due to stress in my body and not a “regular flu.” I learned to listen to my body very closely and be proactive about my health. I spent almost one year after tapering suffering from adrenal insufficiency. I didn’t know it was adrenal insufficiency and my doctors didn’t know either. I was sick, in bed most of the time because of my lack of energy and general pain, I couldn’t eat, I felt like an old woman, hurting all over, couldn’t walk, sit or get up, couldn’t take a shower without assistance, always shivering from being cold. I didn’t have to go through that.
My message to all my Cushing’s friends: because Cushing’s is a rare disease, be aware of your symptoms, is it the flu? Or is it hormonal insufficiency? The ongoing management of post-Cushing’s patients is very important. Have your endocrinologist monitor you closely for several years after your surgery and ask him/her the symptoms that should be reported. Most of us have suffered through many years of undiagnosed symptoms before Cushing’s and we shouldn’t have to go through several more years of undiagnosed symptoms after Cushing’s either.
I do have a question for anyone else out there who is taking low doses (10mg/day or less) of cortisone. I have found that I have gained weight since restarting cortisone and I am wondering how others determined the correct dose for themselves. I would love to hear from anyone who is in that situation!!!
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