Those with adrenal probs..do you find that your stamina is weakened when your adrenals aren't being managed properly??
Maddie just wants to sleep loads and is tired constantly. She can manage one good day but then the next she has off school and literally lies around and sleeps. It's a pattern.
We have had to pull the pushchair out of the garage and start using it as she can't walk far again. Either due to her breathing or sheer exhaustion. (And I sooo wish folk wouldn't judge and make comments that she's too big for a pushchair but that's a whole new rant!!)
So is it common to be so exhausted or do we need to look at her meds again?? She's moved from maintenance pred to hydro about 6 weeks ago and ever since the change she has struggled. Either with her chest or exhaustion.
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Hi Emily,
if replacement is bob on and the lungs are behaving, a person with adrenal insufficiency should feel just as they would if they didn't have it.
But... getting the replacement right is very tricky! I've got mine down pretty well now, but after I walked six miles (to see the TDF) on Saturday, I was exhausted yesterday. Some of that is just fitness I'm sure, but part of it is that you just can't quite match what the body does, and so at times your body will have used the cortisol you've given it, and so you end up with other processes not quite right - your electrolytes go off a bit or you get a bit dehydrated and that takes a day or two to right itself again.
It sounds to me like she's slightly under-replaced - if she was drastically under replaced she'd be feeling truly awful and have no 'good' days, so it's probably quite a small difference from what she 'needs' - or it may be that on good days she's doing so much that if she was producing her own cortisol she'd make a bit extra. If I run more than 5k I take an extra 1/4 dose. If I have a very busy day with client meetings and travel I take an extra 1/2 dose... otherwise I just grind to a halt!
There's a lot of variation in how individuals metabolise and use Hydro, both between people and within those individuals depending on what they're doing. Small infections affect people differently - I need quite a lot extra for an insect bite, for example. At Maddie's age infections are flying around constantly (as I'm sure you know.)
Some children and teens with primary adrenal failure take a tiny dose of pred at night because the growth hormone complicates things too, but I guess they are hoping that Maddie might recover at least some functioning of her own? If that's the case then they'd probably prefer to under replace her slightly to allow her adrenals the option of 'waking up'.
Two thoughts:
1) Do you have endo nurses to ask about this?
2) Do you use a blood sugar meter for Maddie? My blood sugar drops as soon as I'm hypo-adrenal, and this is even more common in children.
Of course there's also an element of it being totally normal small-child behaviour to have a big day and then be exhausted the next... whether she's drastically outside what is expected of a child her age or just a little different from it is something the GP might be able to help you consider?
We don't have any endo nurses unfortunately. It would be great to have one though. I monitor her blood sugars. When she's tired and wiped out I've noticed them to be about 4.5-5.4 at tea time. Whereas on a good day she is around 7. So always within the ok range. She has in the past been around 10 for a while.
I'm hoping things will settle soon.
Thanks again for your reply x
Hiya, I don't know what Maddie's dosing schedule is, but I recently attended a seminar by Professor Hindmarsh at Great Ormond Street Hospital regarding adrenal insufficiency. It was so interesting. He has done a lot about dosing and circadian rhythms and specialises in children with adrenal issues.
Unfortunately the body is incredibly clever and responsive (when it works! LOL) and so we can never really hope to replicate this with tablets, they are a blunt tool. Would be fab if we could all have a cortisol pump... I find that most of the time my dosing schedule works for me, but then there will be the occasional day where for whatever reason I struggle with symptoms of low cortisol before my next dose, and have to take it earlier.
I've attached some info you might find helpful here... both of these issues were discussed at the seminar and apply regardless of the reason for the adrenal insufficiency x
That's really interesting - I've had some very scary hypos overnight recently, generally at around 5 or 6am, particularly when ill - down below 2.5 and a couple of times below 2.0. Fortunately I still have enough hypo awareness that my body wakes me up, and I somehow drag myself into action... but the 1.x ones scare the pants off of my HCPs (and me, to be honest). These are happening well outside the insulin window, so I know they're not related to that.
Taking an extra dose at 4am during illness would probably make a big difference to me.
It's also great to read that oral HC can take 2 hours to reach the peak, because I'd been told something more like 20-30 minutes and yet I have a consistent experience of oral emergency doses being neither use nor ornament to me - where as if I jab myself with the same dose, or even lower, I start to recover fairly quickly.
Ideally we'd all have the option of HC pumps, but I can't see that happening soon, given how many Type 1s with brittle diabetes are still in the queue for them. I have a digital insulin pen (google pendiq ) and have realised that if I could just get the solu-cortef into the insulin cartridge then it would work brilliantly as a micro/accurate/emergency dose delivery mechanism for HC... I'm going to have a chat to my endo about that possibility.
Wow thank you so very much. I bet that was an interesting day x
Hello you,
you're welcome - one of the things which Prof Hindmarsh talked about was that the (normal) overnight peak of cortisol is what protects people from hypoglycaemia in the early hours of the morning. Consequently with AI, if we are taking our last dose at 5/6pm, it is out of our system by 11/midnight, - just when it should be starting to rise for the peak in the early hours! He was quite emphatic about circadian dosing.
On an empty stomach, oral HC should 'start' being absorbed within 30 minutes, but won't peak for a couple of hours. BUT if you're very low or crisis situation, your gut will have stopped working and stop absorbing, so oral then becomes useless.
Because Im pump fed and my stomach needs to keep working overnight, I actually take a small dose of pred around 10pm, as this lasts longer - peaks approx 4hrs later at around 2am and keeps my stomach working. Without it my gut grinds to a halt, stomach fills with feed, I wake up puking, and Im back to being at high risk of aspiration pneumonia again. Thankfully my endo is supportive of this.
My friend has just got an insulin pump. Diagnosed as type on aged 13, now after 20 years of very unstable diabetes despite good compliance, testing etc they have finally caved in and let her have one.
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