Low Cortisol: So I'm on Long-term... - Asthma Community ...

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Low Cortisol

floating_ profile image

So I'm on Long-term Prednisolone and I'm at 5mg. Had a cortisol test at 9am with no pred on board and found out I have low cortisol. What are the next steps?

11 Replies

What cortisol test was it?.. did you have an SST (short synathen test) ?

floating_ profile image
floating_ in reply to Chip_y2kuk

No, just 9am cortisol.

Chip_y2kuk profile image
Chip_y2kuk in reply to floating_

Short synathen test was what I had next... however I wouldn't worry about it my 9am cortisol was 50 it was also 50 when they did the sst but stimulated to over 500.... the endocrine teams conclusion was steroids where "taking the place of cortisol so the adrenal glands didn't need to produce as much" ..... but as I need steroids to breathe (I also only have short bursts of prednisolone but high dose inhaled) that no further action was required ..... end of case endocrine discharged me

Mark-f profile image
Mark-f in reply to Chip_y2kuk

If you’ve stimmed at 500 after an sst then that’s considered a pass … I’ve now been diagnosed with secondary adrenal insufficiency due to long term pred use .. I was on 25mg every day for 5 years .. I asthma was so severe.. but the pred has ruined me ..So I’m now steroid dependent and can never come off

Chip_y2kuk profile image
Chip_y2kuk in reply to Mark-f

Yes, that's why the endocrine team discharged me

I'm still classed as steroid dependant and told not to suddenly stop without "proper medical supervision" ... however like most here I need them to breathe so stopping suddenly isn't on the cards anyway.... the severe asthma clinic has told me to carry on as I am

Mark-f profile image
Mark-f in reply to Chip_y2kuk

Have you not been offered biological therapy… I’ve been on this for 5 years .xolair, mepolizomab and now for the last 18 months Benralizumab… it’s been totally life changing for me ..

Chip_y2kuk profile image
Chip_y2kuk in reply to Mark-f

No I haven't however I have been diagnosed with EDAC .... so it's likely my issue is more so that, but they have decided I probably am asthmatic as steroids help

It will depend. If you do have adrenal insufficiency then they will work out a package for you with an endo nurse that you can phone. I have a sick day rule that I have to follow with additional steroids and I carry IM Hydrocortisone.What I would say is don't try to cross too many bridges before you need to. A good team will take you through it one step at a time.

Good luck.

MikeWhite profile image
MikeWhite in reply to Anselm198

Same as. 15 mg cortisone am, 7.5 afternoon and 10 early evening is my dose

floating_ profile image
floating_ in reply to Anselm198

Thank you!

My tertiary care asthma nurse called me and said my levels were 24 (severely low) so they're discussing immediately starting me on hydrocortisone as I'm very symptomatic.

I suppose if I need an injection kit they will tell me?

It is worth bringing it up with them. You don't want an emergency if you can avoid it.

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