Addison's Disease Support Group
Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone
I was diagnosed with AD in 2/2012. I take 10mg of HC in the morning and 5mg around 3 pm. I do not take any other meds for AD. My doctor told me that this is a low dose of HC. As a result, I gained about 50 pounds, with dieting, in the two years of taking HC. The only symptom of AD that I was aware of having was being very tired. This feeling may have come from working too hard. My doctor gave me the ACTH test and it showed that my Adrenal hormones were a little low. Sometimes I wonder if I came back too soon after taking the ACTH test. Did I really wait 60 minutes before giving blood again? Well, my insurance changed and I had to change doctors.
I told my new doctor about my concerns and asked him if I could be retested. He said he would have to wean me off steroids over a period of time. He also caution me about the danger of being off steroids. He said he truly understands my concerns of whether or not I truly have AD. I said this way I would know for sure. I prayed and reduced my steroids to 5mg in the a.m. and 5mg in the p.m. Today is the first day of reducing the steroids. I don't want to get sick or die just to know whether I truly need HC, but I don't want to take HC and continue to get fat. I know it is much better to be fat and alive, than skinny and dead. But I do want to know for sure whether I am truly AD. What do you think about weaning yourself off steroids with your doctor's help? Do you know anyone or anything about weaning yourself off steroids? I would like to keep in touch with you all about the results (good or bad). Give me your opinion.
I told my new doctor about my concerns and asked him if I could be retested. He said he would have to wean me off steroids over a period of time. He also caution me about the danger of being off steroids. He said he truly understands my concerns of whether or not I truly have AD. I said this way I would know for sure. I prayed and reduced my steroids to 5mg in the a.m. and 5mg in the p.m. Today is the first day of reducing the steroids. I don't want to get sick or die just to know whether I truly need HC, but I don't want to take HC and continue to get fat. I know it is much better to be fat and alive, than skinny and dead. But I do want to know for sure whether I am truly AD. What do you think about weaning yourself off steroids with your doctor's help? Do you know anyone or anything about weaning yourself off steroids? I would like to keep in touch with you all about the results (good or bad). Give me your opinion.
A blood draw for cortisol levels is not reliable except for the exact time the blood draw is given. You would need a early AM to late PM saliva test to determine your cortisol levels throughout the day, not just at blood draw time.