I have had a number of people ask me if I'm "better yet?" The answer to the question is no, but I'm getting there. I think one of the hardest things to explain to people is how long this process is. I'm not just recovering from surgery, I'm also trying to balance every hormone in my body. For those of you who are interested in muddling through my horrible anatomical lessons read on....
I had a 10mm ACTH-producing adenoma in my pituitary gland. This tumor not only made my body make too much cortisol, it also damaged the pituitary surrounding it. I was lucky to have such a fabulous surgeon, and he removed only about 20-30% of my pituitary when the tumor was removed. This is important because the pituitary produces so many hormones and without at least 50% of it, it stops producing those hormones.
This is where it gets more interesting... One would assume that as soon as the tumor was removed, I would get better right away. However, there are two issues. First, my body is used to having high doses of cortisol after so many years of it, so when the tumor was removed I had to take high doses of cortisol (60 mg/day) and slowly wean week by week. I am now down to 17.5 mg/day and try to wean down 2.5 mg/day ever other week. Second, because the tumor was producing ACTH for so many years my pituitary gland stopped producing it--it went to sleep. Only with time and weaning will my pituitary wake up and start producing ACTH on its own.
Weaning is truly the worst. The 3rd through 5th days after decreasing seem to be the worst of the wean. I am freezing cold, nauseated, have piercing headaches, diarrhea, and can't seem to focus or find the words I need. I try to start my wean on a Thursday so that I have the worst of it over the weekend and can rest. Sometimes I can't tough it out and I have to go back up 2.5 mg/day for another week and then try again. Weaning from cortisol has been compared to weaning from heroin. Don't become a heroin addict!
Not only does the pituitary fall asleep and stop producing ACTH, but the trauma to it from the surgery causes it to not function as it should. I am now deficient in growth hormone, thyroid hormone, estrogen, and testosterone. Again, these hormones should come back with time. My thyroid levels are almost good after a few months on synthroid; I'm waiting out the estrogen and testosterone hoping they'll kick back in soon without drugs, and I am trying to get tested for growth hormone to see how much I need to take. (The wheels turn slowly in the medical field!) The effect of these other hormones going away is that I am fatigued, moody, and haven't lost any weight.
The lack of weight loss is concerning because it can mean one of two things: I need growth hormone or Cushing's is back. Growth hormone deficiencies mimic Cushing's weight gain and many people start to lose weight once they start the injections, so I am trying to not worry about it for now. I am currently confident that Cushing's is gone for the following reasons: my monthly blood draws show my morning cortisol numbers to be so low they aren't on the chart, being able to sleep through the night, no panic attacks, buffalo hump is gone, alien skin is gone, and stretch marks aren't red.
In the annoying Cushing's manner, I am in wait and see mode for a while.
So to the question "Are you better yet?": I am able to handle a lot more than I could months ago, I am back at work and able to run the kids around. I can make dinner most nights, and only nap a few times a week. I can read again and actually follow it. I went to a couple of fairs this fall and walked around and lasted all day. I am getting better and I can't wait to answer the question, "Are you better yet?" with a resounding yes.
5 years ago
