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Adrenal Insufficiency - it is possible to recover with severe asthma?

Dino40 profile image
12 Replies

So it was confirmed that I have secondary adrenal insufficiency the other week.

They did also look at Primary but my blood results have shown that it is down to the steriods taken for my asthma.

My cortisol level was again below 28 and unreadable but surprisingly my ACTH came back at 49. Renin was high.

It's got me wondering now if recovery may be possible however I've needed short courses of Prednisolone every year for the last few years and I've been on Prednisolone for over a year continually now.since I last went on it last year.

They're going to switch me to hydrocortisone if I can reach 7.5mg of prednisolone to replace the lack of cortisol and then keep Prednisolone for my asthma. . Respiratory haven't come up with their side of the plan yet.

Has anyone managed to recover from adrenal insufficiency with such a low cortisol amount?

Thanks

12 Replies
four4 profile image
four4

It is possible for the adrenals to recover, but I cannot make comments on your case. It is because you are still depending on higher than physiologic dose of prednisolone for your asthma control. As long as your intake of steroid become equal or lower than the physiological dose (prednisolone 5mg/ day or hydrocortisone 20mg/ day), your own adrenal may wake up and resume its function.

However it may take a long peroid of time, before that you may need to take physiological dose of steroid to maintain normal body function.

In some cases the adrenals cannot recover, it may due to previous high dose and prolonged steroid treatment.

So don't loss hope, just follow your Doctor's direction. Observe and report your body reactions when the dose change.

hilary39 profile image
hilary39

I've had secondary adrenal insufficiency for three years and my cortisol is still super low with no sign of recovering :/ I developed it after years of taking pred on and off to treat asthma attacks.

What is your exact new regimen? Will you be taking 20 mg of hydrocortisone a day (that's often the standard dose so that's why I'm guessing that but some people do a little more or less) AND prednisone too until your asthma flare is under control?

If you search "adrenal insufficiency" in the archive there are a ton of good posts on it. A lot of us on here have it.

A big thing for me was learning to split my dose since HC gets used up in your system more quickly than prednisone. Everyone is a bit different but it typically works to take your biggest dose in the morning since your cortisol is naturally highest then. I do 10 mg at 830 am 5 mg at 1230 pm and 5 mg at 330 pm.

Lysistrata profile image
LysistrataAdministrator

I recovered after 4 years with secondary AI (I had about 15 months on continuous pred, then a gap with short courses, then just over a year, then more short courses). Mine was never that low though - I used to be low 200s at the start of the synacthen test but I couldn't produce surge cortisol when i needed it, my response was just flat so I still had secondary AI.

I had one crisis: I had started to reduce my hydro dose under medical advice and then I caught RSV which set off my asthma - that led to a crisis and I had to be assertive when I was in hospital with my asthma to stop them reducing the hydrocortisone again so soon after the crisis, when I was still ill. I used my emergency injection at the time of the crisis, once I worked out I needed it. It may well have been a lifesaver - have you been given one and shown how to use it? Worth asking if not.

I mostly managed it ok though, with the help of a great endo nurse - it sounds like you have seen endocrinology? If not you should ask to be - my asthma team referred me, but according to my friend who's just started seeing them, they're not even doing anymore and they're trying to manage AI stuff themselves; I'm not convinced they should be as it's not their area and they've said/done some odd things around it.

This post was written when I still had AI and you may find it helpful, even if you already know some of this. healthunlocked.com/asthmauk... It's definitely an area where educating yourself is needed since as I mentioned above, it seems to be an area that's ripe for confusion and a lot of non-endo drs will get it wrong and not even realise. I have had to be assertive a few times and also make sure I have back-up steroids.

As Hilary has said, timing is important and splitting the dose really helps with the biggest dose in the morning - I felt dead every evening just on 5mg pred, and much better on split dose hydrocortisone.

Dino40 profile image
Dino40

Thank you Four4, Hilary 39 and Lysistrata.

It's a bit of a long winded story.

Respiratory initially panicked for want of a better word when they got the result. Grabbed the nearest Consultant who immediately put my Prednisolone up to 10mg from 7.5mg.

Then that was it, I got no referral to Endocrinology. They referred to a possible referral in their letter which confused my other Consultants and doctors. I had to see a endocrinologist privately in the meantime. Then after 7 weeks respiratory admitted they hadn't really taken in the seriousness of it and immediately a referral went into my local endocrinologist. That's the one I've just seen.

(That's a very short summary of a very complicated not joined up thinking situation 😔)

I'm seriously ill anyway at the moment with a lot going on. I do split my prednisolone during the day as it helps with sleeping. I learnt this through an Addison's group on Facebook. The local endocrinologist wasn't happy about it as she said it wasn't giving my adrenals chance to wake up overnight even though my last dose is at 2pm latest.

The plan is for 30mg Hydrocortisone split into the standard 3 doses throughout the day. Biggest dose as you say in the morning.

The local endocrinologist was going to consult with respiratory as to my needs for prednisolone but unfortunately hasn't so I'll have to ask the GP to do that as I haven't had an asthma plan for months now. My asthma did respond to increased Prednisolone for a kidney infection a while ago and I got above 300 in peak flow at the time which I hadn't had for months so I'm concerned there's still a need for it for the asthma .

I'm currently struggling to wean down again from the increased dosage for the kidney infection so having to go slowly as the bone crushing pain and flu like symptoms have been awful. Hoping to get to 15mg of prednisolone next week

Unfortunately the local endocrinologist hasn't been that great, her appointment was a mere formality of we'll put you on hydrocortisone, yes to a dexa scan, we'll get you an emergency injection kit and see you in @ few months. No real plan of how to improve my current ill health. She hadn't even read my notes and she didn't even know I had a cardiologist or other Consultants involved in my care. My cardiologist and physio were also not exactly impressed with the letter.

I had read your excellent post Lysistrata before coming on here. It's an excellent summary.

My cortisol was too low to do an SST test at the time and apparently it's an automatic diagnosis of adrenal insufficiency if your cortisol is undetectable.

It would just be handy if someone could tell you what your chances are.. my cortisol is pretty much undetectable but now I know my ACTH is normal it's kind of got my hopes up but then I know I need an awful lot of asthma medication that may make it impossible. Just don't want to get caught in a cycle of infection then increased doses, then withdrawal symptoms as I wean down again and so the cycle continues...😔

Thanks so much for the replies. 😉

Same here. Cortisol under that level too due to steroid inhaler

Attempting to taper off. Hospital seem to have forgotten though: no letter after my appointment nearly a month ago

Endocrinologist didn’t even know inhalers can suppress the adrenals.

Really fed up.

Dino40 profile image
Dino40 in reply to

Do they think you can taper and your adrenals recover?

in reply to Dino40

They don’t know. They gave me hydrocortisone.

I think you said your cortisol is undetectable but ACTH is normal?

That’s different to me: my ACTH is undetectable and my cortisol is extremely low, but detectable and rose in the synacthen test, although still far too low.

They can’t say whether on lower/ no asthma steroids the ACTH might return or then whether my cortisol can increase

in reply to

Also agree endocrinologists are a waste of space. Insufficient knowledge and no plan.

My ACTH was undetectable

How are you doing now? A month ago you wrote you were seriously ill; I hope you’re gradually feeling a bit better.

My feeling right now is fear. Fear of the unknown and that the doctors don’t know and will leave me to it.

Dino40 profile image
Dino40 in reply to

Yes, I get that fear you feel as you do have to do a lot of the work yourself.

I'm still very ill thanks and in limbo but having to find other ways to get help.

Glad they've put you on something. I believe hydrocortisone is closest to our natural cortisol and is better to wean off than pred.

Is there another hospital or Consultant you could ask for?

in reply to Dino40

My endocrinologist phoned yesterday and is retesting my cortisol and ACTH after Easter.

Still no respiratory letter and I can’t come off Seretide without something else for asthma. They started Montelukast which certainly helps, but in the appointment they said Biologics

Yes, I agree that hydrocortisone is better than prednisolone for AI.

Sorry to hear you’re in limbo. I really hope things improve for you soon.

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