I feel so swollen I can hardly move. I have reached peak frustration with this issue - like want to stop taking my meds frustrated. I wrote the entry below as a Facebook post, which was probably inappropriate as a forum (particularly as it got zero acknowledgement, not so much as a prayer.) I was too mad to even go home or think straight after I got weighed at my doctor's appt and ended up spending hours in my car trying to stop the frustrated, angry thoughts by playing word search and hidden picture games on my iPad to calm myself. I am still so frustrated, the idea of just trying to stop the steroids altogether still has some appeal. But I am getting ready to start a masters program in less than 2 weeks and know intuitively that is probably not a good idea. But I meant what I said in the message below -I rreally can't take the continued weight gain at this exponential rate. I feel like I don't even fit in my own skin anymore. For a couple years, all I did was lose weight no matter what I did. Now, since March, I have gained over 30 lbs (largely in 2 sudden 15 lb bursts, which is a big jump for someone my size, normally a 2-4 for nearly 30 yrs of my life).

Also, FYI, DS friends, I was recently switched back to Dexamethasone (instead of Hydrocortisone), as my replacement therapy medication. I was on a total of 30 mg HC per day, in a split dose (20 mg at 6 a.m., 5 at 11, & 5 at 2 p.m, but I was still so exhausted all the time, I was falling asleep mid morning in my car, and sleeping up to a total of half the week. My endo allowed me to return to Dexamethasone at my original, starting dose of .5 mg/day, & I have had 5x as much energy since. However, I was also shocked to note that despite having more energy and being a lot more active as a result, I gained 7-8 lbs between both of each of my last 2 3-week Dr visit intervals. I don't weigh myself between visits or I would become way too obsessed about my weight all the time, but this time not focusing on it has let it get way out of hand. I feel so swollen in my lower body, it is painful to walk or bend my legs. Does anyone have any suggestions? Or know if Dexamethasone is worse for this than the Hydrocortisone? I honestly don't know what to do. I am so tired of being tired, but I don't think I can tolerate being this weight (and rising) as the trade-off either. HELP!

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I am really struggling with this. I was diagnosed with Secondary Adrenal Insufficiency in February 2013, when it was discovered that my pituitary gland (which is supposed to produce the signal to the adrenal glands to gear up for action) produces only "undetectable levels" of adrenocortical hormone. With no messages getting to my adrenal glands to 'do their job' (the good old "fight or flight" response that helps ensure our bodies get the necessary messages to pump more blood, produce more energy to respond to stimuli, etc.), I was having an incredibly hard time just staying awake some days. Discovery of (and beginning treatment to correct) this readily apparent fundamental deficiency marked a wonderful turning point in my quest to return to a more full health. I subsequently launched a new business venture, returned to school, etc. However, as time has gone by, it has become more apparent that this adrenal/pituitary problem (like so many things) is not really so easily amenable to a "quick fix". It is not as easy as simply taking replacement hormones to make up for what my own body fails to produce. Now, at 6 months after having begun the steroid replacement therapy, I have gained between 25-30 lbs (and this effect does not seem to be tapering off or stopping yet!:-(). & I am no longer so sure that the effects of these horrid medications are tolerable. However, it is my understanding that until or unless my own body can support some adrenal function on its own, it is absolutely NOT AN OPTION to stop taking the steroids for this condition. I will be rechecked in 3-4 months, but meanwhile I am (apparently) stuck right where I am - trying to accept that which to me is unacceptable: Potentially die if I stop the hormone replacement, or just continue to get larger and larger with seemingly no end in sight (and little to no correlation with what I eat). ("I delivered both of my children at weights nearly identical to my present steroid-induced weight!) -- I like to think of myself as a pretty easygoing, happy person these days, unruffled for long by much. But I am furious with this situation at the moment.

I'd like to think there just have to be some other options here. I got authorization from my physician today to try a juice fast - for cleansing - (no total fasting allowed) - in an effort to reboot my system or however that works. I pray that it will work, as the Endocrinologist says it is highly unlikely my 3rd (& final) set of adrenal function tests will come out differently from the first two. There just has to be something more I can do. I am open to any advice on "juice fasting" within the parameters authorized by my doctor (*supposed to supplement with 60 mg of protein a day, too. It hardly seems like a fast, but I trust her judgment and knowledge of my comorbid factors.) I don't know the first thing about juice fasting, but a lot of extra sugar a day seems like a bad idea right off the bat, so I am sure there are other things to know and/or avoid.

Prayers, positive thoughts, and encouragements gladly accepted. :-)