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
About two years ago I had pneumonia for the third time in seven years, after a few weeks I finally got better but was week, tired and would get sick often. i continued to get worse till hurt my shoulder the doctor called it a frozen shoulder. I was to weak to work and my shoulder kept me on pain meds. My wife finally forced me to go back to the Doc. She explained my systems and the doctor did blood test found Hypothyroidism. Took months to get the levels up to the correct levels. At first I got better then the bottom fell out and I started having Adrenal Crisis. I didn't know that was what was going on till later. My wife again took me to the Doc. and explain what I looked like during a episode and he ran test and finally found AD.I started taking Hydrocort and got a bit better about six month later he did more test and put me on flurdorcort. I also have suffered from depression for the last couple years.
I take my meds but still have sweats, hypoglycemia, tire easy, my memory is shot, get confused easy, my sleep is crazy, pulled mussels and cramps all the time. Every time I think I;m about ready to find a job I seem to relapse. It all seems cyclic... and frustrating. My doctor seems to think I'm on the meds I should be fine... but I'm not
I take my meds but still have sweats, hypoglycemia, tire easy, my memory is shot, get confused easy, my sleep is crazy, pulled mussels and cramps all the time. Every time I think I;m about ready to find a job I seem to relapse. It all seems cyclic... and frustrating. My doctor seems to think I'm on the meds I should be fine... but I'm not
Some people start steroids and never really feel to bad. The rest of us spend our time trying to get our dosing right, sleep, etc., so we can have a normal day. Or at least better days. Doctors think we should be fine just taking our steroids. Not to many of us are. I've never been o.k. again, I'm always tired. This week I can't sleep.
I was dxd with both at the same visit. It took me awhile to understand what my body was telling me.
How much steroid are you on a day? And how do you spread out your doses? Did the doctor explain stress dosing and give you an emergency injection kit?
Feel free to ask any questions you might have.
do you do flu shots?
Stress dosing has a real learning curve. I've done as little as an up dose of 5 mg to double my daily dose for a short period of time. If you are on a double or triple dose for more than a few days you need to Titrate down by 2.5 mg every few days. Don't stop the high dose overnight if you've been on it for awhile. If I believe I'm going into a crisis or have a small medical procedure I do the injection. In 18 years I've only been to ER 3-5 times for a crisis. The injection has really saved me numerous times. If they didn't give you anti-nausea meds ask for them. The standard rule is if you vomit twice you need to go to the ER because you have stopped absorbing your meds, you threw them up! This is where Phenegran suppositories and an injection can keep you out of the ER.
Steroids stay in your system around 4 hours. You want them to mimic what your cortisol would do. 20 mg is low for a male. 15 mg is a teen dose, 25-30 for most women and some men, up to 50 mg a day for men. At 20 mg your still having a lot of symptoms. I would talk to the doctor about adding more to your daily dose. Also you need to spread out your afternoon dose into 5 mg each, you will feel better with better coverage. I take 25-30 mg a day in 4-5 doses to have complete coverage for the day. Largest dose when I wake, 10 mg, then smaller doses as the day goes on. You should get a little more clear in your thinking and help your fatigue.
This disease is all about education. The more you can learn the better you'll feel. You might not ever feel totally great, but you can feel better than you are now. I'm not sure if the doctors don't have the time or just don't know a lot of the common sense stuff I've learned on this site. Feel free to ask anything.