Very low end of normal lab values for cortisol and ACTH after stopping

I’ve had PMR for 2.5 years now. Every time I get down to about 3 or 4mg of steroid I have a problem with my cortisol levels. Mine too are low normal. The fatigue is overwhelming and does not just go away after a few days. I had to go back up to 6mg. Just because we are down on the steroids or off them completely does not mean the body is ready to jump back in action. Cortisol is a hormone produced by the adrenal glands that plays a vital role in regulating various bodily functions, including immune response. It gets smashed by the steroid and takes awhile to get going again. I’m seeing an endocrinologist the end of this month to help me with this issue. So frustrating.

I found DHEA 25mg helpful in weaning off the last 2 mg
of long term prednisone. Consult your doctor for their
opinion. It is a natural hormone that declines as we age.

I agree with the comments. I found it to be 6 months to start feeling better. I have said and many others that they never reached their old self. It is true that sort of an adrenal fatigue stays with you. Even being off prednisone it leaves a lasting mark. I do not have any suggestion. I went and had a full hormone panel. I found my testosterone was a little low. I then started looking at any other medications. I found the zetia for cholesterol was causing some fatigue. Dadcue posted a video from Dr Megan. She described the restarting of your cortisol as more like watching the sun set. You do have to be careful. Try to still manage your stress. Watch your diet. Live a pretty bland life. I had 2 what I would call the start of a flare. I took a prednisone pack for 5 days like you would treating asthma. Both times it was gone. I have had no flares in the last 2 years.

You need to wait a month or more for meaningful testing. Based on the half-life of prednisone some would be in your body up to about one day following your last dose. Then you need to give your body time to adjust to being on its own before testing. 1-3 days is not enough time to be meaningful, more like 30 days to 90 days would give better vision into how well your body is doing. Your body is working on its own timeline - not the one you think it should be on. Since it is in the green zone, just relax and don't worry about it for now. Borrowing problems is not healthy and keeps you from focusing on being your best today. Take care and remember it is a journey, not an event.

I have multiple Endo problems I am seeing my Endo for. I tell her that making progress with her is like watching frozen molasses drip. She reminds me that the first rule of medicine is Do No Harm. Changing your hormone balance is a delicate process and your body responds slowing to some things and rapidly to others. Patience wins, but it is difficult to keep in focus. I have seen my Endo every 90 days since my PMR hit 6 years ago. We have become friends. She is a wonderful person as well as a fantastic doctor.

Hi! I was on the low end of the cortisol spectrum after major fatigue. The doctor said it was normal for me. The fatigue was not I would have to lay down and take 20 winks. If I did anything major like going to for a doctor visit. After a year or two, it seems to have fixed itself, I take Lcarnitine, B12 injections and went on bioidentical hormones. I take vitamin D every morning. I was tested in 2006 and had an l-carnitine deficiency. When I don’t take a carnitine, I’m very fatigued.

@tuckerp Your comments so interesting. The fatigue is what is killing me and no one seems to be able to help me. Extreme weakness.

sorry to hear. Yes. I was 68 when PMR hit. 72 now. sometimes I think this is what 72 looks like. A medical Dr will say adrenal fatigue does not exist. The correct term is adrenal insufficiency. So whether its a fatigue or your body has stopped producing cortisol then seems were saying the same thing. Not to confuse you more here is video by Dr Christiansen. Its about 10 min long. https://www.youtube.com/watch?v=-wmzrW4VO_Y

@tuckerp Thanks so much. I feel so alone in this. I have asked doctors if it is my age and they say no. No other health problems except arthritis PMR or RA.

Thanks everyone for your input, lots of good information in your comments!

I definitely can relate!