Adrenal Suppression

[Gilead]

So, went to IBD clinic. Have been on steroids since last November, varying doses. Don''t bloody work! Anyway, cortisol level of 55, which I was told today is extremely low. Not to come off steroids, not to drop below 7.5mg and to wear a medical id. I've come home with a list of things. I can't have any blood tests or anything yet because I'm in the middle of moving (probably within the next six weeks) so they want to hand me over to the new hospital. Fair enough.
However, I didn't know about this until I got there, had just been told on the 'phone calprotectin high, cortisol low so could I come in urgently for a medication review. I don't know much about it now, either. I can't have been in there for ten minutes. Any info including whether or not this is reversible would me very much appreciated.
Thank you.

anyone?

Ask to be referred to an endocrinologist to discuss a protocol for weaning. It can be reversible, but not in all cases and may involve switching to a different form of steroid.

Thank you! I feel a bit lost. I'm autistic and ended up unable to take everything in. I got told not to let stress get to me too, in the middle of a house move some 200 miles from where we currently are! I'm researching like crazy but it's all a bit overwhelming at the moment!

Adrenal suppression is normal after a long course of steroids for this sort of thing. Is reversible but needs a slow weaning plan (which allows your adrenals to start working again). Don't stop the steroids abruptly/skip doses. You should probably ask your team about 'sick day' rules if you don't know about this already. The advice re a medic alert bracelet is sensible as it will alert any doctors looking after you if you came into hospital as an emergency and weren't able to tell anyone. This is bread and butter medicine that your GI team/GP will be able to manage the weaning.

That's reassuring, Walking thank you. I can't get a GP appointment until about Friday and am a touch confused. Particularly as I also take beta blockers and can't work out if they are a problem or not - they block adrenaline, but I have tachycardia worsened by the steroids!