Boomer,
Did you say that your primary doc is handling your Adrenal Insufficiency? It might be a good idea, if you are nervous about it, to ask an endocrinologist about your case. They really are the experts, and they should be the ones doing the weaning.
I can't help but to wonder if you had underlying adrenal insuff. first and that all the other diagnoses were related. For example, I had a patient (I am an ER and ICU nurse) who had multiple stomach issues as well as arthritis issues for years, plus the other symptoms of AI. She was treated over and over and over for her symptoms, but nothing seemed to help (surgeries, scopes, pain meds, mental treatment, ETC.). She went into a crisis, AI was found, and now she is on the way to recovery. Her endo beleives that her problems were related to the AI primarily, but since the symptoms can be so vague and difficult to pinpoint no one caught it until she had a crisis. It's painfully sad but true that this is a difficult disease to discover.
As I read your posts, I don't quite understand why your MD's are trying to wean you off the steroids. If you were diagnosed with AI, your need the meds. It is very rare that the adrenal glands 'wake up' again and start producing on thier own. From what I am reading about how you feel, your body is aching for the cortisol. Are your MD's trying to wean you off in hopes your adrenals will start producing again on thier own?
Sage, the adrenals are responsible for producing aldosterone, which helps the GI tract absorb sodium. Since we are lacking in adrenal function many people don't make enough aldosterone to retain the salt we need, so we crave the salt. Some endo's prescribe Florinef to help reabsorb the sodium. But it seems that they don't prescribe it until they see that we have a dire need for it. My sodium levels have always been on the low side of normal, so my endo hasn't even mentioned Florinef. But I feel better if I start the day with a cup of chicken broth every morning. If you have the salt cravings and your MD checks your sodium and potassium, he is probably checking to make sure you are getting enough sodium, and that your potassium is not getting high. (There is a delicate balance between the two electrolytes and thier reabsorbtion in the GI tract.) Low sodium and high potassium, together or alone, can be life-threatening. And it is very common for the Addisonian. They call it a salt-wasting disease.
Sorry for being long winded! I hope this is helpful, and I hope you both will be feeling much better soon.
MaryAnn
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