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Addison's Disease Message Board


Addison's Disease Board Index


Re: I need support
Oct 21, 2005
Dear Abbie,

From what I have read over the past two years (notes from others with Addison's Disease), the weight is an initial symptom. It tends to come on quickly, but can cease to be as much of a factor in mos. to come. Also, people tend to gradually begin light exercise programs and alter their diets a bit to compensate and to enhance their health, energy levels and weight loss!

I wouldn't worry too much about lifelong steroid use and what it could do to you. Often when people talk about adverse effects of steroid use, they speak of taking it in larger doses than you have to take it just to MAINTAIN the steroids normally found in EVERYBODY'S bodies when they do NOT have Addison's. Think about that! We ALL have steroids in our bodies. In normal levels, they do what they are intended to do. It is when people use them to enhance their athletic prowess or take more than they need to replace what their bodies do not make that real trouble arises. So many with Addison's Disease live to a ripe old age without repercussions from the meds. It sounds as if the main thing to fear is not keeping the Disease in check (a crisis or crash because of fear of taking more steroids when they may be needed for stress, illness or extra demans of life).

People who have been the most successful in living a healthy life with the challenge of Addison's rave about keeping a routine of sleep and diet. I think, as a mother of a child with Diabetes, it is much easier to figure out how much insulin my son needs if we keep his carb/calorie intake about the same at each meal. Lots of variance, lots of guesswork and mistakes, making his BS's a rollercoaster ride. Same thing with Addison's, I would say. When our bodies do not have Addison's, they KNOW when to supplement the amounts of cortisol they give us to deal with daily stresses or demands. Therefore, we can live a haphazard life that varies greatly each day. But when Addison's strikes, and you must get your cortisol supply from an outside source that is not in touch with the body's needs, and gives you the same amount each day. In this case your DAYS must now be almost the same with regard to diet, length (sleep), and activity level, to allow the dose that is calculated to be right for EVERY day.

I think as long as you are merely giving your body what it needs in supplying it with the cortisol it no longer makes, you need not worry about effects of taking copious amounts of cortisol. Many elderly Addisonians are living proof of this. When we hear of adverse effects, few are felt by those with Addison's Disease taking their daily meds. More are felt by those who either abuse them or who take copious amounts for some reason.

Hope this has helped in some way! ~ :wave: Trace
Re: I need support
Oct 30, 2005
thanks keraly, wanda, rufffneck, for your imput and support. I recently saw my endo and she actually lowered my cortef, so now i'm taking 10 mg/ daily and as for florinef, she reduced it to .1.5. I will see here in another week and she will possibly lower the cortef again. she is running more blood work and thinks that we might try to get me off cortef to run a test on the high acth levels i had. anyway, i feel like i'm in good hands, and did get a second opinion and that endo agreed. ruffneck, question for you or wanda and keraly, are you telling me you cant lose any weight caused by the steriods????? I would think it would depend on the dosage, exercise, diet. please tell me you can, or that will be depressing. also, i never heard of different types of addisons. is there a big difference between addisons and adrenal insufficiency? I cant find much in support or actual facts other than the medical books. Actually, i feel alone with my illness. There should be a support group out there. thanks again for replying, it put asmile on my face to see i had messages. hope all of you are hanging in there. abbie.
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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