I've posted about this before, but didn't get any responses.. so I will try again as I'm sure I'm not the only Addisonian who struggles with sleep, early morning waking (4am) in need of steroids, etc. It has become such an unpredictable nightmare because sometimes when I take cortisol at 4am I cannot get back to sleep but am exhausted. And other times, I end up falling back to sleep, and then feel absolutely runover when I try to get up by 10 or 11. I've lost my job due to this and can't imagine what I will do for work as I can't commit to being anywhere at a specific time. I'm not sure what, if anything I could be doing differently, and doctors have been of no help. I take a fairly late evening dose (compared to most others).. like 8-9pm.. but this is in hopes that it will carry me through the night.. no such luck.
Any similar experiences, thoughts, or suggestions? Or is this just part of having a failing endocrine system, and it is what it is??
hi, I read your post but don't have any experience with dosage. I just take 7.5 hydrocortisone during the day the lastest being about 1 pm. My levels do go up a little at night and are very low in the am. What I wonder is why you have to take cortisol to go to sleep? I thought low cortisol made you sleepy. BUt I am new to this. sorry I couldn't be of more help. CJ
For some reason I used to get up 4 o clock in the morning every day! I took small dosage of cortef then and it let me go to sleep easily. My cortisol levels came out to be very slow when I did salivary test but I didnt think they would be so low right in the early morning.
Hello, My name is Steven, I was born with Addison and other diseases. I take up to 60mg of hydrocortisone and 0.1mg of fludrocortisone. I also use androgel, synthroid and whole bunch of vitamins. I do have trouble sleeping but I try to take my meds in the afternoon. If I need some hydrocort I will take,but will not be able to sleep if to late. Hopefully you will be able to adjust for yourself. No other person will have the reaction as you, nobody can know what or how you feel. Doctors read text and blood work, but you know how you feel. You may also crave salt and or water. I am always thirsty I can't get enough water. So going to the bathroom in the middle of the night is a pain. This is something I have been able to adjust over the years. I am 40 and have been taking for all of my life. Any questions please ask we can learn from each other.
What makes you think you HAVE to have the steroids at 4am?? that sounds weird to me. I take my last dose around 4pm so I am ready for bed around 11pm. If your doses are regulated you should not be waking up like that.
How much hydrocort do you take in a 24 hour period? Is this the only meds you take and what for? Maybe I can help, I have been taking hydrocortisone for 40 years and I'm 40 years old.I have other meds I take but one step at a time. I really hope you can feel better and get the proper help.
Hi Steven .. thank you so much for your incredible kindness and concern. I just wanted to drop a quick line to thank you very much for your responses to my posts, and let you know that I will write back over the next couple of days when i have more time. Mornings are very difficult for me, thus I get a much later start than most.. in other words, it's noon now and I've barely started my day and need to go do some things before the sun goes down.
But answer me one quick question, I'm curious about the timing and dosing of your hydrocortisone? Let me know the times and how much you take throughout the day. I know we're all different. I just like to hear what's working for other people. And how do you feel in the morning? Is it a struggle? Also, curious if you have issues with your blood sugar? food cravings? sweets? lots of salty things? or the need to eat frequently?
Hello Mollie, i take 20mg 3 times a day. Morning-afternoon and about 6pm. I take 0.1 mg of florinef in the morning only. I have addisons disease and hypothyroidism. I take 125mcg of synthroid only in the morning with water and wait about 30 minutes before eating or drinking coffee. I crave salty foods and water or liquids, I stay away from soda, I drink water of juice. When I need more synthroid I crave sweet foods or sugar. i of course can not just take more meds, its a day to day thing. When synthroid levels are good sweet foods are to sweet or undesirable. This is for me only not for anybody else, please do not use as a compass for yourself or anyone. I gain weight a little each year about 4-5 pounds. This starts to add up over 5 years, and well its not easy to lose any weight. Thanks for your post.