Low cortisol levels

[Amkoffee]

My rheumatologist did some blood work today and found that I have low cortisol levels. In fact she said that it was very very low. I can't remember the number she gave me. I don't take prednisone any more and haven't taken it for quite a while. She's going to have a talk with an endocrinologist and get his opinion on where to go from here. I really don't know what to think. I have multiple chronic conditions and this just seems to be another thing I have to worry about.

[SheffieldJane]

It might recover in the meantime you might be prescribed Hydrocortisone to encourage recovery. Good luck!

[Becki-boo]

Hello Amkoffee,

Sorry to hear about your problem.

Low cortisol can be a pituitary or adrenal gland problem which will make you feel tired, maybe dizzy and you can lose weight. My brother in law started being tired and he lost a lot of weight over a short period after blood tests it was found his cortisol levels were really low and after more tests was diagnosed with Addison’s disease. I’m not saying you have that at all. My brother in law was told to increase his sugar levels to see if that helped him. Maybe give it a try to see if it could help you (as long as your not diabetic).

Hope you get sorted soon. Becki xxx

[herdysheep]

I can't comment on low cortisol levels but sorry to hear you have yet another thing to deal. It can be demoralising but the referral to endocrinologist should help.

[jinasc]

Once off Pred, it can and does take quite a while for your Adrenal Glands to get up to speed. That is why you have to carry your Blue Steroid Warning Card for at least a year once off long term pred.

I am surprised it is a 'talk' and not a referral to the endo. If you don't get an answer, say within a couple of weeks from the rheumy, methinks you need to have another 'talk' with your rheumy.

[Amkoffee in reply to jinasc]

She called me back and now I have an appt with an endocrinologist for Wednesday.

[jinasc in reply to Amkoffee]

Good. Let us know how you get on please.

[PMRpro Ambassador]

It's almost certainly secondary Addison's post-long term corticosteroid treatment - it is far more common than many doctors thought. Patients manage to function but have no reserves. As long as you are on pred it is less of a concern although extreme stress of any sort could be risky. The pred acts as a replacement but the usual alternative is hydrocortisone given in 2 or 3 divided doses per day to mimic the natural production of cortisol. It could be the cause of some of your problems - it too can cause aches and pains.

[Amkoffee in reply to PMRpro]

As always you are a wealth of information. I stopped taking prednisone over a year ago with one exception. I did a 5-day prednisone pack about a month ago because of pneumonia.