I'm at 17.5mg right now, and my doctor says recent studies show that we make around 15mg when we are healthy and only take 20-25 when sick, and that 25-30mg is too much for anybody on a normal basis.


Symptoms are constant muscle exhaustion and fatigue. Should I consider a new doctor if they are unwilling to try anything higher?

I'm at 17.5mg right now, and my doctor says recent studies show that we make around 15mg when we are healthy and only take 20-25 when sick, and that 25-30mg is too much for anybody on a normal basis.

Symptoms are constant muscle exhaustion and fatigue. Should I consider a new doctor if they are unwilling to try anything higher?

Keep a detailed diary. Write down when you nap, when you feel fatigue and exhaustion. Write down what events you missed, how you felt during the ones you did attend and how your life is being affected.

After several weeks, take the diary to your doctor and ask him if he would like to lead your life? There is nothing to lose by trying 30 mg/day. It won't kill you in a year but it might just help.

Remember, he is only a consultant. You are in charge, it's your life we are dealing with, not his. He goes golfing after seeing you while you lay down and sleep after your visits. He is not god, and neither he nor anyone knows the right dosage of hydrocortisone. Endocrinology is one of the most underfunded areas of medicine so no proper tests have been done to determine exactly what is going on with adrenal insufficient patients. Most of what he is saying is just guessing.

If he can't agree to be a partner with you; if he insistes he is god, then it's time to move on to a new doctor.

I was started on 10mg back in November. I had just been diagnosed with Lyme at that time also so I was a mess. As time went on I felt it wasn't really helping with the physical exhaustion that was bascially constant. I could sleep all night but wake up tired. I did alot of research on my own and found there are people on all amounts of cortef. No one person is the same or will react the same. I just went in and told him that I don't feel any difference and should my amount be raised. He said yes and now I am taking 20mg. I know it takes a long time for the adrenals to get back again so I am trying to be patient. I don't actually care what any studies say because this is my life and I need to be able to function somewhat. If I don't feel much difference by next month he might raise it more but luckily I am starting to feel it slightly and I know I won't be on this forever. I just have secondary AI which is bad enough..
I had been sick for 2 years before anyone could figure it out so my adrenals were very sick..

Kim

I totally agree with Orion. They took me down two weeks ago from 30 to 20 mg of cortef when I was doing GREAT. I was having sugar crashes, fatigue, and very grouchy. With the help of the board, and giving it two weeks, I called to inform them I was moving myself back up to 25 because I felt horrible. She called this afternoon and told me to make it 30, they don't want me to feel this way. I already feel better. Find a doctor who will listen.

Thanks for the informative input you guys.

Orion, you nailed my life, and you're right. If she chooses not to do anything bigger I'm moving on.

ktp, That's about how long I've been sick.. unfortunately I have primary so it may be tougher to ever get function back if it is possible.

KMathew, that gives me hope.. at 17.5 I'm doing horribly. Hopefully 30 will have the same effect for me.


I do know that when I went to the hospital for 5 days and they gave me 200mg of hydrocortisone per day. I felt more amazing than I ever remembered feeling in my life..and it lasted almost two weeks after I had left. It crushed me when my exhaustion returned..now I'm, in a way, chasing the high I felt..trying to get it back.

I'm at 17.5mg right now, and my doctor says recent studies show that we make around 15mg when we are healthy and only take 20-25 when sick, and that 25-30mg is too much for anybody on a normal basis.


Symptoms are constant muscle exhaustion and fatigue. Should I consider a new doctor if they are unwilling to try anything higher?

Hi,

I am a primary addisonian. I had cushing's disease and had to have both of my adrenal glands totally removed (bilateral adrenalectomy) about 3 years ago. My docyotr says the same. I currently take 17.5 mg of cortef a day. But I am also taking florinef .1 mg and .5 every other day. (fluodricortisone) Do you also take this? If not then you would require the higher dose of cortef.

I have some very interesting reading on the subject if you are interested let me know where to send. What is most important is for you to feel good. If not then speak with your dr. If he doesn't satisfy then consider a 2nd opinion. I know it makes a huge difference to have an Endo that specializes in pituitary axis and adrenal disease. Believe it or not all Endos are not the same!

Hi,

I am a primary addisonian. I had cushing's disease and had to have both of my adrenal glands totally removed (bilateral adrenalectomy) about 3 years ago. My docyotr says the same. I currently take 17.5 mg of cortef a day. But I am also taking florinef .1 mg and .5 every other day. (fluodricortisone) Do you also take this? If not then you would require the higher dose of cortef.

I have some very interesting reading on the subject if you are interested let me know where to send. What is most important is for you to feel good. If not then speak with your dr. If he doesn't satisfy then consider a 2nd opinion. I know it makes a huge difference to have an Endo that specializes in pituitary axis and adrenal disease. Believe it or not all Endos are not the same!

Hey there Jricci, just read this message.. If you could please send that information to strawser81@yahoo.com I would really appreciate it.

Unfortunately you may not ever see this, anybody know a way i can email her? I can't seem to find that option in her profile.

Three things briefly:
A. I'm malabsorbing right now, so my 45mg/day (plus 0.2mg Florinef) is barely getting me by. Not feeling good even there, but don't want to go higher.
B. I still have not found an adrenal-aware endo here in the Dallas TX area.
C. You might find this helpful - I keep a "well-being index" in Excel, of my own making. I track how I feel on a scale of 1-10 (see below), morning, afternoon and evening, then graph it with an average in a darker line. My MD (internist) has started going by that quick overview to see how I've been doing. I've touched "8" a few times this year, and also hit "2"
WELL-BEING INDEX
9 = Normal. What a normal 51-year-old feels like and can do. A full-day camping, boating. Would be nice.
8 = Able. At this level I can feel an urge to do something like ride bicycles with my son, for a short time.
7 = Feeling just "OK." I can go shopping up to 2 hours before I have to rest. I can do paperwork, but not much physically.
6 = Borderline. At 6 I don't feel I can do much, but I can push myself to walk, drive, shop, if needed.
5 = Impaired. Below the line. Running on 3 cylinders. At 5 I'm physically or mentally unable to function normally, although I can often fake it.
4 = Heavily Impaired. Can move around but cannot push normal function.
3 = In Bed.