Over the last few weeks, my weight has been creeping back up, my skin has been getting angry, and my hair has started falling out again. My newly purchased size 8 jeans don't fit, and I have had an appetite for the first time in over a year. All of these things I have explained away in my mind until a week ago when it hit me. IT'S BACK. I woke up last Saturday morning afternoon, and as I walked into the bathroom to brush my teeth, I realized that I HAVE to be producing cortisol. I had a feeling before last Saturday but was too afraid to even think about it. I have too many things going on with my health and I just couldn't bear the thought of dealing with this monster again.
I had gained 10lbs overnight. Once 155lbs, I am now 175 just a few weeks later. My stomach is hanging over every pair of pants I put on, I feel swollen all the time, I can't sleep, and I want to eat everything in sight.
When I was off steroids from September 2011 to September 2012, give or take a few days here and there, I lost weight rapidly and had a normal/small appetite for a while. We did scans, blood tests, salivary tests, urine tests, cortisol stimulation tests, and found NOTHING. I figured it wasn't a big deal since I felt ok and looked great, but in the back of my mind I knew that last week could become a reality.
I think back to January, when I was probably the sickest I had ever been coming home from New Hampshire, and it kind of makes sense that this all started then. My body was probably trying to get help any way it could and this little piece of tissue that regrew or had been left behind started kicking in, and overtime, caught up with my ACTH production and went into overdrive.
I've been crying myself to sleep most nights. It's hard to believe that this is happening right now. I thought my only "responsibility" right now was to deal with this new MEN-1 diagnosis, have parathyroid surgery, and move on. Days like this, I wish I could see into the future. Just to be able to stop worrying and just know what I'm up against. How many more surgeries? How many tumors? When is enough, enough?
I had gained 10lbs overnight. Once 155lbs, I am now 175 just a few weeks later. My stomach is hanging over every pair of pants I put on, I feel swollen all the time, I can't sleep, and I want to eat everything in sight.
When I was off steroids from September 2011 to September 2012, give or take a few days here and there, I lost weight rapidly and had a normal/small appetite for a while. We did scans, blood tests, salivary tests, urine tests, cortisol stimulation tests, and found NOTHING. I figured it wasn't a big deal since I felt ok and looked great, but in the back of my mind I knew that last week could become a reality.
I think back to January, when I was probably the sickest I had ever been coming home from New Hampshire, and it kind of makes sense that this all started then. My body was probably trying to get help any way it could and this little piece of tissue that regrew or had been left behind started kicking in, and overtime, caught up with my ACTH production and went into overdrive.
I've been crying myself to sleep most nights. It's hard to believe that this is happening right now. I thought my only "responsibility" right now was to deal with this new MEN-1 diagnosis, have parathyroid surgery, and move on. Days like this, I wish I could see into the future. Just to be able to stop worrying and just know what I'm up against. How many more surgeries? How many tumors? When is enough, enough?
I'm sorry you have to go through this again. :( Try to get the tests and the results first before you worry yourself sick over it. I wish you luck and strength to continue this draining fight.
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