Posted 1/21/2013 6:41 PM (GMT 0)
Hi Journey2Health, I was hospitalized for colitis/GI bleed in 2010. While there, I was also having bizarre symptoms of feelings of dispair, almost suicidal, didn't want to talk to my family, alientated them actually, hair loss, didn't want to eat, my mind felt like it was in overdrive, and other really, like I said, bizarre symptoms.
While in the hospital, my BP and blood sugars were jumping from extremely/dangerously high readings to bottoming out. For instance, a blood sugar of less than 40, they forced me to drink juice, came back and it was well over 400. Then they tried to give me insulin. I refused. BP readings of 200's/100's, next readings of 90's/50's, and this was on my regular BP meds, and I was not on any diabetes meds.
Running out of options, by chance, the hospitalist ordered a cortisol level which came back and was dangerously low. They figured out that the Prednisone I had been on for dermatomyositis had caused primary Addisons, and the colitis/GI bleed was secondary, basically, my body was shutting down. The colitis basically saved my live.
I am now on Hydrocortisone, 20 mg. q a.m. and 10 mg. q 4 p.m.
I know this has nothing to do with the ulcerative colitis, (I am actually on this forum for my husband who suffers from U.C. and is in a very bad flare at the current time), but saw this post and wanted to respond.
I have 24 hour urine cortisol levels done now every 6 months to check my stability.
My family is aware that if I start pulling away from them or start behaving odd, I need to have my levels checked immediately.
The stress of caring for my ill husband has resulted in my hydrocortisone dose to be increased to now include the p.m. dose, because I was, as I call it, having a brain "crashing". I don't know what else to call it, and that explains it for me and for my family.
The Predisone I was on was this, back in 2009, was 60 mg. daily for 1 week, then 50, then 40, x 1 month. We did that 3 times, thus 3 months, spread out over approx. 6 months. Then my derm. put me on 2 mg. of Pred. as a maintenance dose, which apparently was just enough to help my dermatomyositis, but also apparently enough to barely, BARELY, keep my adrenals going.
The hospitalist told me that my cortisol levels were so low, he didn't know how I was able to keep working full time, didn't know how I was surviving. I was barely holding on, I thought I was losing my mind, I was afraid if I talked to my family and told them what was going on in my head, they were going to commit me.
I was grateful, thankful, I cried when I found out that it wasn't "all in my head". Within 24 hours of the cortisol IV, I was feeling normal. I could finally tell my family what I had been feeling, because up until then, they had no idea. I had just shut them out for 2 months, I had hurt them, I wanted to hurt myself, and didn't know why. And the hardest part was that I just could not bring myself to talk to anyone about this.
Steroid induced addisons is very serious. Anyone who is having any "odd" symptoms after any lengthy treatment with prednisone should speak with their GI or family MD about getting their AM and PM cortisol levels checks, 24 hour urine cortisol levels checked. And if you feel like you are losing your mind or going crazy after steroid treatment, definitely get to your doctor immediately.
I do suffer from several auto-immune diseases. Now I added Addisons to the list.
Thanks for listening.
And thanks for being here for my husband. I've gotten so much great info from this forum, I truly appreciate it.