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StaceyJenn's Story

I was diagnosed with adrenal insufficiency, hypothyroidism, and a host of other ailments in 2001 (candidiasis, intestinal permeability, 22 latent food allergies which was no picnic in its own right). At that time I weighed 89 lbs and my bp was 70/50. It took me 2 1/2 years to get to this point, as doctors couldn’t figure it out. My normal weight is 103 and bp is 103/70.

Once diagnosed, I was on specially formulated hydrocortisone for 7 years as I was allergice to the fillers in the meds. My doctor stopped practicing (I miss him) and was transferred to his associate. She wasn't as good, adn switched me to medrol, and forgot a lot of the supplements I had been taking ( I contined to take them anyway).

Somewhere around year 3 I started to gain weight - up to 122. Since doctor’s don’t consider this overweight for a 5”4’ frame, there wasn’t much I could do to convince them something was wrong. I ate very little and starting working out like crazy and went down to 119 but it took months.

In 2005, I moved to a townhome that was filled was mold, mildew etc and I had a neighbor who smoked and it would come through the vents and walls. I wound up developing severe allergic asthma and was put on controller inhalers and nasacort AQ. More steroids!! I went up to 134 lbs. In late 2007 I gained 30 lbs in 3 months and my bp climbed to 133/90. I was depressed - I couldn’t work out as I had suffered a concussion a few months earlier and was forced to up my steroids to heal. I didn’t eat any differently – just upped my steroid dose due to the concussion and it was AWFUL. I was up to 164.

I saw a new endo in Dec 2007, and brought pictures of what I used to look like. The whole shape of my face has changed. My stomach is huge - my body is a size 6, my stomach a size 16. I have a buffalo hump, and my knees are too swollen to bend some days. He saw me for 15 mintues and knew what it was. Iatrogenic Cushing's.

They started weaning me off the medrol in December. That's a whole other story!! What a nightmare! Seems my body has become addicted to it and am having withdrawal symptoms - body aches, weird light-headed feeling, brain fogginess, etc. I have only dropped 1 mg in 2 months and I now weigh 155 with no exercise, no change in eating habits. The weight seems to be falling off the same rate it went on. My buffalo hump is almost gone, and I am down to one swollen chin, instead of two!! My energy level has greatly improved and I feel better overall.

My test results from December 2007 showed my cortisol as low, but he’s still weaning me off of the steroids. I am not sure why the tests come up low, perhaps because it’s impossible to get an accurate reading when you're on steroids? Anyway, I am keeping my fingers crossed as I have had it with Cushings. I miss yoga, I miss swimming, I miss feeling and looking good. I've had it with the "Oh, are you pregnant?" comments and I miss tying my own shoes or putting on socks without turning my legs. The depression has been lifting greatly since I've started coming off the medrol, but am still having some trouble with mood swings for about 2 weeks after lowering my dose. I feel bad for my fiancee who bears the brunt of all this, even though he's been wonderfully supportive.

Anyway, there's a WHOLE lot more to this story, but this is the shortened version. :) For now, I try to look in the mirror and smile (it ain't easy). Anyway, just wanted to tell my story and say that you are NOT alone.

Feel free to email me, especially if you ahve any questions about supplements as I work with a doctor who uses herbs and supplements to help the healing process and it's saved my butt on countless occasions.

Hope all of you Cushies hang in there - try to come to terms with how you feel and what you look like right now. I try to take comfort in knowing I will look like me again someday.

StaceyJenn

Update July 31, 2008

I am finally down to 1.5 mg medrol, down from 4 mg. It is getting even more difficult to reduce the steroids on a timely basis. It's now .5 mg every 2 months (had been 5 weeks). Not sure if that's because I was on them for 7 years or because I'm so sensitive. Weight gain has continued at a rate of 1-2 lbs/week, to my dismay. Am now 156. I had lost weight, but I had been hospitalized for shortness of breath and outpatient surgery , etc. Those episodes landed me stress doses of solu-medrol and prednisone. It's been a few months since the last episode, but it seems like the Cushing's is moving faster than my ability to reduce the steroids. Diurectis stop me from gaining weight, and just hold my weight steady, but I am not willing to take them on a regular basis. Have been trying alternative methods - will post later to let you know how it works out. I am completely off the inhaled corticosteroids for the asthma - as a new dr does not think I have asthma, but rather vocal chord dysfunction.

I go for tests on Aug 18 with new ENT. Also being tested for mysathenia gravis due to shortness of breath, muscle weakness, and some weird neurological things that are popping up, but that could be attributed to the steroids. After stopping the inhaled steroids, 2 weeks ago, I've noticed a diffference in my shoulders and arms and face - they are not as puffy and are starting to resume a more normal shape. I am so angry at the doctors who didn't listen to me for the last 2 years when I said it's not asthma. I am angry at myself for continuing to take the meds on their advice, afraid they were right. I have cataracts, osteopenia in my hips, and I have had it with the steroids. I am only 35. It is difficult to not drown in my anger at times. I have found a new alternative method for my anxiety that is helping a great deal. it's call an emwave - it's a biofeedback device used in conjuction with heartmath. It's a huge help.

Hope to post better news next time. Thanks for all your support!!

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StaceyJenn was the subject of a Live Interview April 3, 2008 in the Cushings Help Voice Chat / Podcast series. Archives are available here.