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Hydrocortisone for adrenal insufficiency

Maddie (4) has adrenal insufficiency allegedly caused by high steroid use. She has been on pred for the last 2 yrs or so and it's been used to control her brittle asthma as well as keep her adrenal problems at bay. She starte on 5mg for her asthma and has now weaned down to 1mg which apparently means its low enough to be able to do a Synachen.

There has been discussions about transfering her to hydrocortisone instead though. The pred has taken its toll on her little body and obviously the hydro will be kinder to her.

Anyway, Thursday is the day for her Synachen test to see what's going on with her adrenals. She's never had one before. Her adrenal insufficiency was diagnosed by a morning cortisol of just 16, instead of 700. :(

Can anyone tell me the level that is sufficient for her not to need any supplemental hydro?? The consultant wouldn't tell me if he thought she would need hydro or not. He wouldn't even give me a slight idea of the outcome. All he said was that IF she needs hydro then it would be 3-4 times a day and he calculated the dose in advance just in case.

I know if she needs it then that's the best thing for her BUT I just want some idea as to the outcome!! Can she go from a cortisol of just 16 to a near normal cortisol level??

I feel all over the place at the moment with it all and just want answers!! Maddie is tired, weak and breathless. :-(( she hasn't been like this for ages. :-((. Just wish I could see inside her little body an know what is going on!!

Can anyone shed light onto the cortisol levels and required meds??

1 Reply

My main reassurance would be that my endo cons said to me that if I could get stable on hydro and not need pred for my asthma, I was much more likely to get some adrenal function back. Pred is quite slow release (which is why it's only needed once a day rather than three or four like the hydro) but that means that when she's on hydro her body will have a bit of time (6hrs after her evening dose of hydro) when her adrenals will have a bit of a chance to wake up. One tip I would give you is to have the hydro ready to be the very first thing she does in the morning, esp as littluns tend to sleep for a long time. I feel like its 2am when I wake up and it tends to take about 15/20mins after my hydro to start me waking up. I tend to be a bit of a moody cow in that time as well, I also find it hard to wake up, and often have two alarms, and my mum wake me up and I'll have full conversations and then go back to such a deep sleep I have no recollection of it. You may also notice her being a bit 'irritating' (my mums word) when she is due her next dose, it just makes you feel pretty rough, but it's a good indicator that she's due a dose, and a way of working out if she needs to stress dose etc. there is no way of knowing if her adrenals will have woken up, I'd suspect if she's looking pretty ill on a lower dose then they probably aren't fully awake. But the move to hydro wasn't particularly hard for me, I soon got used to it. If u have any questions, I can answer from my knowledge, I suspect doses and timings will be different in a child, but I'd suspect a lit is similar!


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