Hi Darla,
I guess the best way, is to have your cortisol levels checked. I think 30 is a rather high dose, but everyone is different, with different requirements. My a.m. cortisol was 1 (one), essentially nil and I'm on 15 mg./day, which is sufficient for me. Initially, I was on a much higher dose, but I did not do well, at all. I still become easily exhausted, but I either push through it, or give in and lie down for an hr., or so. I think fatigue is a huge issue for all of us...definitely the great debilitator!

Hi you lunarphase thanks for you post you said you were once on a higher dose of Cortef but you had problems then decreased it. If you dont mind me asking what were those problems? Thank you so much.

There is no way to 'check' and know if you are on enough or too much or too little steroid, unfortunately. You can only go by how you feel, and what side effects, if any, you are experiencing from the steroids. Things to watch for are weight gain, high blood pressure, putting on fat pads behind your neck on the top of your back, your face getting rounded, skin thinning, bruising easily, among others. If you are getting a lot of side effects, you are probably taking too much. If you are exhausted all the time and not functioning well, you are probably on too little. Of course, that is, if Addisons is your only medical problem. It is difficult to know and you have to experiment some to try to figure out what dose is going to work best for you. Hopefully your doctor is working with you to help you figure it out, and give you some lattitude to experiment some. Hope that helps.

Hi Darla,
The dexamethasone suppression & ACTH Stim test can detect excessive amounts of cortisol. Morning cortisol levels which do not fluctuate throughout the day are indicative of high cortisol, ex: your blood cortisol should be low at bedtime.

Prior to reducing my HC, the following are a few examples, which have since subsided. Granted, some effects may have been during the time my body was adjusting, but I have no doubt my initial dose, was excessive. I had my cortisol levels checked weekly and as a result, was able to gradually decrease. But again, everyone is different.

-Uncontrolled Bleeding/Hemorrhage(breast biopsy).
-Insomnia.
-Low Protein & Albumin.
-High Fasting Glucose Level-495(I was previously hypoglycemic).
-Hepatic Lesions (most resolved/reabsorbed.)
-Chronic Upper Respiratory Infections (monthly antibiotics).
-Brain Fog..well beyond.
-Dilated Pupils, Excessive Sweating, Shakiness, just overall hyperactivity.

I realize some literature indicates one cannot 'overdose' on exogenous HC, but my experience dictates there can be adverse side effects from too much HC.

I absolutely agree with Vanyel, it is trial & error and add'l medical issues to be considered, but there are tests to determine excessive cortisol.

I don't know what the implication is, if you have hypercortisolism AND take Cortef, but I would imagine this would not be the best thing?? I do hope you feel better.

Hi thanks for input. I guess thats the hard part it seems its a guessing game. I feel like the DR.s are guessing too. I need to do blood work I dont think there doing it often enough. Yea Im still exhausted all the time, and gained a little wieght which feels more like Im holding on to fluid, which you think would help the chest pain and shortness of breath but I still have that its like the fluid is not being pulled into my vascular system(whats up with that) well my female hormones are giving lots of trouble and that may be some of the problem too. Tired of being tired (you know) thanks for input I appreciate it very much. Darla

I just came back from the Mayo clinic and they yelled at me because I was on 35mg a day for the last 7 months. Previously was on 25mg. I was always tired and nauseated and headache, etc. and have no symptoms of excess cortisol-high blood pressure, weight gain, fat on back and neck area, yet they only looked at my number and said lower it. So I am!

I am now on 30mg a day and doing ok. But I also decided to lower my stress levels and change my life a bit. I am a Mom to two young kids and am very busy, and I have always over-stressed myself! Now I am changing that along with meditation, and so far I am doing Ok. I hope to get down to 25mg again, we'll see??

Good luck, I know it is tough!

Tanya

You have been given good advice. I can only tell you my experience. To me 30 mg is a low dose. I have been functioning on 55 for the past five years with a high stress job. Due to chronic nausea as a result of high steroid use i lost my job. I am now reluctantly on 30 mg a day now, but I don't work much. I personally can't imagine taking less, despite what my endo says. The fatigue would be overbearing!

Hi thanks for your input, Im not sure what to do with dose still tired at 30mg bu have some weight gain probably fluid retetion, so I thought it might be to high. So much guessing. Thanks .Sorry you lost your job, I hope things are better for you. Darla