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Addison's Disease Message Board


Addison's Disease Board Index


Re: I need support
Oct 31, 2005
Dear Abbie,

Sounds as though your doctor is weaning you off of the steroids TEMPORARILY so that she can do an accurate ACTH test for you? That's great. Hope you won't feel too badly in the process. I know it will probably be tough to go down in the dosage of your meds. But it will be great to have a more accurate and in-depth diagnosis to direct treatment in the future! Be mindful of signs of adrenal crisis (as the doctor has probably advised you of) during reduction in dose of Cortef. (Look for nausea, diarhea and vomiting, low BP's, dizziness, weakness, and report them to your doctor if these appear.) When will she give you the ACTH stim test?

As far as support groups, there are many. Unfortunately, I cannot list them here, nor give you my e-mail address. I'll suffice to recommend that you do a net search using the words Addison's Disease messages. Another search you might want to try involves the letters (and I hope this doesn't get me thrown off of here, but you are crying out for help, so I'll try to give it to you, KEEPING within the rules of THIS valuable board!). Type the letters n a d f into a search, and you'll find lots of help and information and possibly links. There, I've said it. No names mentioned specifically; no URL's quoted. So sincerely hope this doesn't ruffle anyone's feathers or throw a wrench into things here!

There are different types of adrenal insufficiency (or different CAUSES, I should say). A person can have failing ADRENALS, or adrenals which are not putting out enough cortisol due to a faulty PITUITARY gland, which is not asking the adrenal to do its thing. The former is called primary adrenal insufficiency (same as Addison's Disease), and the latter is referred to as secondary adrenal insufficiency (not referred to as Addison's, but requiring much the same treatment, and having much the same symptoms). It is the cause that determines which one you have. You need to determine whether your adrenal glands are failing (or may even have a benign tumor on them) or whether the pituitary is not functioning (or may have a tumor or adenoma on IT).

As far as ALD and other diseases which effect the adrenal glands' function, I have never heard them refered to as Addison's Disease, but perhaps I am just ignorant of this naming. I would have classed them ALL as diseases that bring on adrenal malfunction or insufficiency. But as for Addison's Disease, this usually refers only to "broken" or "shot" adrenal glands, as far as I've known.

As far as the weight, the only thing I have to go by is the statements of many on various support groups, who have struggled with this problem. One very helpful thing for all of their health AND weight loss and fitness was to actually CHANGE their diet. Many tend to prefer the almost vegatarian approach, with some meat and carbs. They tend to eat a balanced diet void or almost void of caffeine, alcoholic beverages, refined sugar, artificial elements and large, high carb meals in favor of V-8' juice, Gatorade, WATER (water, water, water -- did I say WATER yet?), and soups and fresh veggies and fruits with some fish, chicken and small portions of red meats and some whole wheat grain substances -- basically a healthy adult diet for anyone. Regular, mildly aerobic exercise that can be continued without fail and made into a routine is advised (nothing too taxing, unless worked up to slowly). Walking is recommended. Remember, too, that a faulty thyroid gland often goes along with autoimmune adrenal or pituitary problems. Hypothyroidism can cause you to gain weight and and make it hard to lose. You might want to have this checked out as well! Hope this helps, Abbie, and doesn't get me "fired"!
~ :wave: Tracy





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