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
Hi. I am at my wits end! Sick of my endo doc and trying to deal with this disease. I have been trying to get back into the workforce. Been on disability and tried off and on to work. I AM SO DISCOURAGED! I was also working out and this is when it first started...EXTREME FATIGUE. I would be so wiped out after exercising that I ended up in bed the rest of the day. Now trying to work and the same thing is happening. I work in retail and for 4 hrs a day. The next day I am so fatigued and actually have all the symptoms of addisons, feel like I'm going to pass out, sugar cravings, can't think, can't function, blurry vision. Has anyone else experienced this? I'm only on 15.5 mgs of cortef and .01 of fludrocortef. I keep telling my doc about it and she just says we can't increase the cortef. Thanks!
First of all I would change endo's. 15 mg is a teen dose of Cortef, not a mature persons dose. 25-30 mg for a woman, up to 50 mg for a man per day is what is recommended. Some endo's want you under 20 mg because of the long term effects of steroids. But even at 25-30 mg a day you should use up that each day, replacing your cortisol. Taking your biggest dose in the a.m. and spreading them out through the day. Steroids stay in your system about 3-4 hours. I've been on 40 mg a day now since April, due to various illnesses, etc. I'm not sure when I'll get back to 30 mg a day. My endo isn't too worried.
As for the exercise, I can only walk or swim without having to up dose on my steroids. Both my primary and endo said not to do that if that is what it takes to exercise a little harder. I know on Facebook a number of people are taking really large doses of their steroids in order to run and workout in the gym. Some run half or whole marathons but take up to 200 mg of steroids to get thru the race. I'm like you, I have unbelievable fatigue if I do more than walk or swim, without lots of extra steroids daily.
I worked the first 14 years I had Addison's. I've been on disability for almost 4 years now. I don't think I could go back to work. You might be able to work part time if you were on a decent dose of Cortef. I'll bet you would feel so much better on 25-30 mg a day.
Has your doctor given you a prescription for an emergency injection kit yet? If not, that is a must to have. Mine has kept me out of the hospital multiple times.
I hope this information helps. Let me know if you have any questions.
I am able to exercise 1-1 1/2 hrs. most days. If I work around the house with very busy work for more than a couple hours plus working out I get very fatigued and lightheaded. I have been on disability for 3 years, I am 62 yrs. old and had retired the year before due to the affects of Addison's.