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 All,
I got diagnosed with Addison's on New Year's Eve. My Cortisol level was 0.6. I am very fatigued ; especially between 12-5. I am 5'6 and weigh 115 lbs.
My endocrinologists has me on; Hydorcortisone 10 mg. at 6 am and 5 mg. at 12 pm. I've called her to complain that I'm not feeling any better and asked her to up my dose . She said ,'no!" She also said my body only needs the replacement dose which she said is 15 mgs. and that it is dangerous to put me on more and she won't .
I've been reading posts on this site and it seems eveyone is on more mgs. Am I on a baby dose or what?
I am so fatigued, I feel as I have stopped living my life. I feel like my day ends at 12pm and I need to be promtly on the sofa either napping or resting. Since my diagnosis I feel as if my life has been stolen. My quality of life has considerably diminished.
I had a root canal last week and my endocrinoogists told me I had to triple my dose to do the procedure. So, I took 30 mgs. at 6 am and 15 mgs. at 12 pm and I felt so much better . I was saddened it was for only three days.
Am I on a low dose and should I seek a second opinion? Also, shouldn't I feel better already or is this fatigue going to be this bad the rest of my life?
I got diagnosed with Addison's on New Year's Eve. My Cortisol level was 0.6. I am very fatigued ; especially between 12-5. I am 5'6 and weigh 115 lbs.
My endocrinologists has me on; Hydorcortisone 10 mg. at 6 am and 5 mg. at 12 pm. I've called her to complain that I'm not feeling any better and asked her to up my dose . She said ,'no!" She also said my body only needs the replacement dose which she said is 15 mgs. and that it is dangerous to put me on more and she won't .
I've been reading posts on this site and it seems eveyone is on more mgs. Am I on a baby dose or what?
I am so fatigued, I feel as I have stopped living my life. I feel like my day ends at 12pm and I need to be promtly on the sofa either napping or resting. Since my diagnosis I feel as if my life has been stolen. My quality of life has considerably diminished.
I had a root canal last week and my endocrinoogists told me I had to triple my dose to do the procedure. So, I took 30 mgs. at 6 am and 15 mgs. at 12 pm and I felt so much better . I was saddened it was for only three days.
Am I on a low dose and should I seek a second opinion? Also, shouldn't I feel better already or is this fatigue going to be this bad the rest of my life?
You are on a teen dose at 15 mg a day. Probably because of your height and weight. Most of us can barely get out of bed on 20 mg a day. For a woman a normal daily dose is 25-30 mg a day, spaced out all through the day so you have the same coverage that your cortisol would have done. Your highest dose in the am and smallest dose in the pm. HC lasts about 3-4 hours in your system, depending on if you are using more up. My dose schedule is 10 mg at 6 am, 10 mg at 11 am, 5 mg at about 1 pm (depends on how I feel, could be sooner or later), 5 mg at 3-4 pm. That way my 30 mg covers my entire day and this will help with your fatigue. When you were on a stress dose you began to feel fine. But none of us can take that much everyday without problems like diabetes, etc. but if you can take 30 mg a day and start a very, very light walking routine and slowly help build up your strength you can feel better.
This is a hard disease to live with. Feel free to ask any and all questions. I think you need an endo who has treated Addison's patients before you. I've was Dx'd 18 years ago, but got very lucky with my endo. He already had numerous Addison's patients back then. You really need a great doctor for this disease so I would start looking. My primary really helped. Good luck.
I can't imagine going up and how it would affect my sleep. I am on Ambien CR 12.5 and Klonopin 4 mgs to sleep right now and I still have a couple night 's a week where I wake up at 1 or 2 in the morning and can't fall back to sleep.
Does this how dose affect your sleep. Because I'm not sleeping on the 15 mgs.
Would you?
I crash from 12-5 , and then I wake up and feel normal at night . It is very weird . Everyday, I feel like I have the flu from 12-5. I have two teen-agers that need to be driven from activity to activity during my worst time of theday and I feel like I can't move my body. It's very scary driving when you feel like you have the flu. My husband has been pitching in quite a bit picking up the slack but it can't last forever because his job requires travel . I feel like my Addison's is affecting my whole family's life. It's a terrible disease . I have every symptom.
Does the fatigue ever get better ? Or is it because my dose 15 mg . is too little?
I think that you are having a huge crash, no steroids in your system just before your 5 mg dose. That dose isn't enough to make you feel better, low steroids or low cortisol can give you flu like symptoms. You do need to be on probably 20 mg so you can split your dose through the day. HC lasts about 4 hours. Some people have found that they are unable to sleep because they have no steroids or cortisol in their system at bedtime. In order to get back to a regular bedtime I did take 2.5 mg HC at about 9:00 pm for about a month. It did help reset my bedtime. If you were to split up 20 mg you could spread it out more through the day and avoid the big crash. 10 mg at, 6:00 am, 5 mg at 11:00 am, 5 mg at 1-2 pm, and then 5 mg at 4-5 pm. You should be able to do some things in that 12-5 time period. The fatigue is one of the worse things of this disease. But getting your dosing better will help.
My doctor says the replacement dose is 15 mgs. and anything more is dangerous with many side effects. I even argued and said I went on support groups and everybody is on more and she asked me if they were doctors? Geesh. I am finding it hard to find another endocrinologist. She is in a group and I did talk with her assciate that felt the same way.
Are you suffering from any extreme side effects from the steroids , other than sleeping issues?
Thank you very much for the information . Every little bit I learn about this disease helps.
And, it is also my experience that doctors in the same "group" will NEVER contradict each other. They back one another up.
Perhaps you might be better off finding a good GP who's willing to help you improve your quality of life.
Both groups are good and have a ton of knowledge for you. Good luck.