Wow, Ash, everyone seems to have wanted to weigh in on this one (pardon the pun).

I’m not a salt-waster, so I didn’t HAVE to be on steroids until recently.  I’m an adult with LOCAH, although my symptoms have been pronounced since I was a little kid.  I refused steroids for a long time because I didn’t want to take medication.

As a kid I was all skin and bones.  Around 16 I started to put on weight.  This was embarrassing for a lot of reasons.  One, I was an athlete and prided myself on my physical conditioning.  Two, I come from a long line of skinny people and it made me feel fatter than what I was when I was around them.  Three, I had hard time getting along with the other kids at school and putting on weight just added to the list of things they picked on me about. 

I threw myself into excessive exercise to try and manage my weight gain, but I couldn’t lose any of it -- the best I could do was simply not to gain more.  If I slowed down on the exercise, the weight would creep up further. 

When I was 27 I was in a bad car accident and was either in bed or in a wheelchair for four months.  In spite of barely eating I gained 40 pounds in the first month after my accident, just from inactivity.  (I had been exercising 6 - 8 hours every day).  All in all, I gained over 100 pounds in less than a year.  It was awful.  100 pounds is like a whole person. 

My accident left me with permanent disabilities so I couldn’t go back to frequent vigorous exercise.  Through drastically restricting my diet I managed to somewhat stabilize my weight.  I was still gaining, but more like a pound or two a month.

Two years ago my LOCAH symptoms began to get much worse.  I still refused steroids.  I was afraid that I would gain even more weight if I went on them, and all I could think is that I’d weigh 500 pounds.  My symptoms became more serious -- constant fatigue, racing heart beat (140-160 resting), reduced immune system, very irregular periods even on birth control pills.  Meanwhile, the weight is heading right up again for no apparent reason.  I felt so sick.  Remember -- I’m not a salt-waster.  But I still felt like I was dying.  I did nearly die from the flu because my body couldn’t handle being that sick.  My doctor finally told me that I NEEDED to be on steroids or I would stay that sick, and I relented.

Ash - in the first three months I was on dex I went down two pant sizes.  I stopped feeling sick within weeks.  No, I haven’t lost all the weight I put on, but I’m headed down rather than up.  I’ve been on dex about a year now, and I feel better than I can ever remember feeling in my life.

I know you feel like it is the meds that are making you gain weight -- and that may be -- but it could also be your CAH.  All of my doctors agree that my weight issues are related to my LOCAH, given especially my experience in the last few years.  Each of us has our own symptoms with it -- that’s one thing I’ve really learned from the variety of people who have shared on the board.  I thought when I was 13 I was just going to be really skinny my whole life -- when I started putting on weight I never imagined it had anything to do with LOCAH. 

One of the other things I’ve learned in the last year:  If my weight starts to go up, it’s probably time to have my bloodwork checked to see if I need a med adjustment. 

And Ash?  I’ve seen a lot of doctors.  Some are good, and some have good reputations, but they don’t necessarily fall into both catergories.  One doctor had the idea that if I gave up eating bananas I’d feel better (something to do with the potassium in them).  She was right, but it seemed like a stupid idea.  My favorite doctor was one that said, "I don’t know what these lab results mean -- I’m going to check with my colleagues and get back to you."  I like the team approach. 

Hang in there.