My Story

This is part 1 of a very long story which I plan to share here. I am starting from now and working my way backwards. 

After years of undiagnosed health problems, we finally figured out that I have Addison's Disease. The treatment is a type of corticosteroid - dexamethasone being one of three possibilities -all of which can potentially cause weight gain, especially around the face (aka moon face), back of the neck (aka buffalo hump), and belly. Other side effects include fits of rage, hence parents of children on this drug nicknaming it the "demon drug".

I was originally put on Prednisone and my prediagnosis weight of 85 lbs slowly and steadily climbed to 100 lbs over the next few months. Sadly, my Dr had a heart attack and I had to find a new one. After some time, I was recommended to a local Dr who came across as very smart and very charming. He convinced me to switch to Dexamethasone because of medical details none of you care about and because it was significantly cheaper. He insisted it would not cause side effects when taken at a replacement dosage.

Was he ever wrong! It took a little while but I started to literally balloon up. I looked pregnant! I got in touch with the Dr who told me I just needed an enema. Oh and my steroid dose was too high so cut it back. Ok, that seems to work for awhile.

Cut to me in the hospital with what feels like an adrenal crisis - severe pain in abdomen, vomiting, heart rate jumps, bp goes crazy, basically feel like you are dying cause well, you kind of are. Your body can't survive long term without cortisol and an adrenal crisis is your body's way of saying "HELLO I need some cortisol stat!"

New Dr has no idea why I am in crisis if I have been taking my meds. Basically implies I am making this up and actually says I am more likely to figure out what is wrong than he is. Great.

Meanwhile, emergency clinic drs do not understand Addison's and do not have me on a drip and instead just give me a shot of cortisol. They accuse me of being a heroin addict and drug seeker. I am crying, confused, and in incredible pain. I finally convince them to do a cortisol blood test to prove I am in an adrenal crisis. They scoff and shake their heads but do it. The bottom of the healthy range is 15. My test showed .03.

I finally see the managing Dr at the clinic. He says I clearly need to up my daily dexamethasone dose and that is the only reason he can think of why I went into crisis. That and possible ulcers because steroids are hard on your stomach. I decide he will be my new, New Dr.

When I am well enough, I research and find out that the same Dr who put me on dexamethasone also put me on a med that prevents your body from absorbing cortisol. So, I guess he was right about one thing: I was the one to figure out what caused my adrenal crisis.

New, New Dr wants to see me in a week. In that week, I gain 10 lbs. I ask him, is this normal, maybe my thyroid is acting up again? No, no he says. Just keep taking the meds and see me in two weeks. I gain another 10 lbs, he insists again it is normal, and clears me to be seen on an as needed basis.

My face is changing, I hardly recognize myself. I feel like a whale. I try to diet and exercise and it doesn't make any difference. Frustrated, I do my best to just ignore it and tell myself to stop being so shallow. I mean, I'm alive! When a specialist tells you to go directly from your appt to a pharmacy to fill a prescription "to prevent sudden death", you know to be thankful for each day. But deep down, I know something is wrong.

Finally, I called to schedule an appt with new, new Dr. He is busy but another Dr in the building can see me. I actually think this is a great idea and ends up being the best choice ever.

Enter Dr Jim. I explain everything to him and he immediately sends me for a full thyroid panel. When I bring him the results, he says he can't believe I walked in to my appt or could walk at all. He was amazed I wasn't hospitalized nor felt the need to be. I was thrilled! Something was making sense. No thyroid function equals quick and dramatic weight gain.

We have to slowly introduce the thyroid med. Getting to a full dose takes 3 months. I feel less swollen. But it's not enough. I'm convinced it's the dexamethasone after hours of research and communicating with people who have taken it themselves. Certain side effects, like stria, seem to be dexamethasone specific.

Dr. Jim helped me switch back to Prednisone in October 2015. We started high to be safe and make sure to avoid an adrenal crisis. I am now slowly weaning that steroid dose down. I know from others it can take 6 months or more to see a total reduction of the dexamethasone side effects. And long-term prednisone use has its own side effects and most people gain weight on it too. But I think it's the better option and I feel more like myself since getting off of dexamethasone.

This blog is where I plan to chronicle my journey towards finding the best balance of medication possible.