It seems some on here have been identified with adrenal symptoms and so just wondering whether symptoms were very obvious or whether they were more non-descript and adrenal difficulties were picked up more by accident. Also wondering how common they really are - depending on which google article you read, depends on whether it definitely is very likely or definitely isn't likely at all! It's one thing being considered at the moment and has been initially screened for (morning cortisol) so am interested in how common these things really are.
Many thanks!
9 Replies
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Just a quick query.
It seems some on here have been identified with adrenal symptoms and so just wondering whether symptoms were very obvious or whether they were more non-descript and adrenal difficulties were picked up more by accident. Also wondering how common they really are - depending on which google article you read, depends on whether it definitely is very likely or definitely isn't likely at all! It's one thing being considered at the moment and has been initially screened for (morning cortisol) so am interested in how common these things really are.
Many thanks!
The problem with adrenal symptoms is that they are quite vague until you hit a proper crisis. Lots of people talk about 'adrenal fatigue', but the symptoms of true adrenal failure are a bit more dramatic.
However, if the adrenal failure comes on slowly then you can get quite poorly without noticing it, it seems.
What was your morning cortisol level?
Mine was picked up when I developed polyuria. (Weeing loads!) I rang my GP because I assumed it was steroid-induced diabetes mellitus. Because she is a star she asked me to come in during her lunch break. She tested my sample and took some blood and by the time I went back 2 days later she'd done loads of research into something called Diabetes Insipidus. I was really unwell by that point so she pulled out all the stops to find the best local endo consultant and get me admitted to hosp that day.
I stayed overnight, had a pituitary MRI, and then the following evening they said I could leave because although the DI was bad, I was able to keep up with it. I went back 10 days later for a follow up test and my cortisol levels were so low that as soon as they got them back the following day, the registrar rang to say that I had to get into hosp by the following morning and that if I was feeling unwell I should come to A&E. I had been up with a 'migraine' since 6am that morning. Initially I thought that it was 'just' a migraine and then I realised that a year ago if I'd woken up that unwell I'd have asked someone to call an ambulance!
I was lucky - I was right on the verge of being in major trouble. It has taken a week to get me stable enough to leave the hospital.
As far as how common they are - I think 'adrenal fatigue' is one of those things that probably affects lots of people, and might just be a variant rather than a pathology. But they are just locking on to the possibility of true adrenal suppression with ICS, especially Seretide. Previously it was only noted in kids, where it was sometimes reversible. To be honest most of my symptoms pre-date using Seretide, so it would be a 'brown' ICS that did for me if it did it. Which ever it was, I couldn't have breathed without it, so I don't have regrets!
So - to answer the question, until I got the extreme polyuria (8+ litres per day), nobody had ever mentioned adrenals to me. I even have a neighbour with a child with addisons, but I just didn't think of it at all.
Maddie was on Seretide but then moved onto nebulised budesonide 1mg!! So a ridiculously high dose. She then started maintenance Pred daily.
We'd noticed her weight decreasing to the point of her looking skeletal and her skin was literally hanging off her :-(( She became lethargic and constantly shivered and complained she was cold. (This was during the summer!!) She was drinking 4L a day but still thirsty. She also kept getting pins and needles in her legs and headaches.
We had taken her in to hospital outpatients app to have an early morning glucose blood test done. While she was there the nurse said she would test her adrenals. The cons hadnt even asked for this, it was purely by chance. We were told the results would be back withing 3 days. That very evening, about 10pm, the phone rang. It was the consultant telling us to go straight to hospital!! Apparently an early morning cortisol level should show cortisol levels of about up to 700, Maddies were just 16!!!!!!
She had a scan of her Adrenals but sadly they weren't evident on the scan....they could even see them!!
I was mortified. BUT they told me not to worry and sometimes this can happen in children. Maddie was 2.
The thing is, I'm not sure!! I've not heard anything to suggest that if Adrenals actually shrink to nothing, that they can recover?!?!
Does anyone know this????
I took a baby for a scan of his kidneys recently and his adrenals were visible....he was 2 days old!! So where were Maddies at 2yrs?!?!
She is now 4 and no closer to coming off Pred. We have no idea if it is Primary or Secondary as she is not able to do the Synachen test. The cons said that at present it would show no function. All I want to know is if its Primary or Secondary!! I know the treatment is no different, it's just 'knowing'!!
Thank you for your replies. It's my daughter, been on mega high dose ICS + pred when needed but like you Curioser I have absolutley no regrets, she's needed to breathe! Looking back, she's always been much tireder and lacking in energy than children her age but we just put it down to her. Then recently, seems to have gone downhill - mega tired, headache, nausea, lost weight and just generally yucky.
Haven't got the morning cortisol result back yet but the consultant said if there were any concerns then he'll do the synacthen test.
It's just not knowing how likely these things are - the problem is, you can go into google and your symptoms can match whatever you decide you want them to match!
Many thanks!
in reply to
Mega tired, headache, nausea, lost weight and just generally yucky.
I had those, plus every time I had an allergic reaction or illness I would also get severe gastric symptoms, faint, have a funny heartbeat - essentially cortisol crisis in minor form.
Recently I'd passed out a couple of times and been very close to it on other occasions. There were always things to hang it on so it didn't seem that peculiar in itself. My weight–loss was pretty dramatic - I lost 15% of my body weight in a month, starting from being on the cusp of underweight anyway.
I hope your daughter is only adrenal suppressed (in a way that can be recovered) and not in adrenal failure. It is a lot to manage even for an adult. I've spent a whole day sorting out print outs and ordering first aid bags (empty - to keep my injections in) and medic aid bracelets and just generally figuring out the first line logistics. We need a complete kit in the car incase I'm ever in an accident. In french and spanish too as we travel there quite a lot. Fortunately the addisons society provides all of that as PDFs. They seem to be ace!
There is so much to do though - I need letters from my GP to allow me to carry my HC injection kit into places that sharps aren't allowed. Including flying.
I will need to 'do' something relevant to my condition at least a dozen times a day. More when I'm unwell. The timing of meds is pretty crucial too so it's going to take a lot of organising. And my diet is going to have to be incredibly precise to manage my allergies, glucose, fluid balance and electrolyte levels. Fortunately I'm inclined towards eating exactly the things I need to - amazingly around 80% of my recent diet has been composed of things that are on the new diet - I think I had been craving potassium without knowing it. I'd already given up 'bad' things because of my allergic asthma, so it's not a leap from there at all. And of course we are used to carrying epipens, inhalers, spacers, piriton, emergency steroids etc.
The advantage I have is that I also have aspergers, so having a really organised routine is actually quite a positive thing for me. It doesn't feel like a constraint in an uncomfortable way at all, but that's my personality - I'm sure there are many people with adrenal suppression who mourn the loss of spontaneity.
Of course it also depends on which complications the adrenal stuff is in cahoots with. For me the biggest difference has been a noticeable reduction in how brittle my asthma is. I was able to walk around the hospital without having a problem with quite extreme temperature changes. That hasn't been the case for years - even on 40mg pred I would still have struggled with cold/hot/cold/hot. So I feel like it has been a contributory factor as well as a consequence of asthma. I'm still having a chest CT to check my heart and lungs, and being tested for a bunch of other things, but even if they find something (cystic fibrosis is a possibility - some people are dx'd very late and I've been responding brilliantly to a drug that is given specifically to people with CF) I think it can't be harder than what I'm doing now. And actually Addison's is less chaotic than brittle asthma - and having both together gives you a lever over stupid doctors so that you can have more say in your care.
Looking back, I'm sure this has been developing for my whole life, though we can't go back and prove that now.
Good luck- I'll be interested to see what the tests come back as...
hth,
Cx
Hi Curioser,
Thank you for all your help. I don't think she's anywhere near as poorly as you are (hope you soon feel better!) - more at the stage of something somewhere definitely not right and just needing to find out what! Like you we have a superb GP and the paediatrician seems very on the ball so we're cautiously optimistic we'll get there,
Thanks for all your help,
has anyone on here already had a short synacthin test - fingers crossed i'll be able to eep off the pred till thurs, then should be having one. My question is - if you 'fail' (as in adrenal glands not working) are they likely to keep you in? I never trust hospd/GPs not to keep me captive for ages - i always go out with the essentials (yes that is my phone, ipod and chargers - im a teenager - its not my fault) but might grab some PJs and/or work if theres a good chance that i'll have to stay in a few days afterwards - i only know of people like C who've gone in already fairly ill and so it would make sense that in that case it might take a few days to sort you out, but given that im already on a fairly rough version of the treatment already i'm not sure if it's be like that! im going for the wisdom of crowds theory!
in reply to
has anyone on here already had a short synacthin test - fingers crossed i'll be able to eep off the pred till thurs, then should be having one. My question is - if you 'fail' (as in adrenal glands not working) are they likely to keep you in? I never trust hospd/GPs not to keep me captive for ages - i always go out with the essentials (yes that is my phone, ipod and chargers - im a teenager - its not my fault) but might grab some PJs and/or work if theres a good chance that i'll have to stay in a few days afterwards - i only know of people like C who've gone in already fairly ill and so it would make sense that in that case it might take a few days to sort you out, but given that im already on a fairly rough version of the treatment already i'm not sure if it's be like that! im going for the wisdom of crowds theory!
Hey Soph, I think if you're stable and not unwell then I'd be surprised if they didn't just let you back out again with oral hydro, perhaps on double dose for a few days. Worst case might be a few hours of fluids and so on - I was so out-of-whack that they needed to give me 10 litres including potassium as well as sodium and glucose, and I needed several days of the IV HC before they could move me to oral, but I could barely put one foot in front of the other when I arrived and had probably been in a slow-building crisis since Tuesday.
They told me today that my cortisol levels on the Wednesday and on the day when they accidentally delayed my IV dose were actually zero, and my ACHT (pituitary 'please can I have cortisol' signal hormone) was unmeasurable (less than 5, when it should be 1000 in that situation). A bump on the head could have killed me - scary!
This means that I have both primary and secondary complete adrenal failure. My pituitary isn't bothering to ask for cortisol, and when it does get asked for (by the test) my adrenals can only cough up a pathetic amount very briefly. I've had a lot of kidney pain recently (another thing that I haven't bothered mentioning to my GP because I've felt like the list was so long) and I think that must have been related. The question now is whether the rest of my adrenal function is also shot, but if it is then it's fairly simple to replace it with another med alongside the HC.
Still no idea what the weirdness on my MRI is - he showed me the scan itself today, and yes, it is very weird, but it's not pressing on any nerves / optical things, and it might not be relevant. The meeting he was taking it to got delayed by 2 weeks so I should hear in a while. I also haven't had the results of all the other adrenal-function stuff, but those should follow soon - they just take a while to process apparently. Otherwise I guess they'll just repeat the MRI in a year to see if it's still there.
The rest of my pituitary function seems to be roughly within range but possibly oscillating in a way that isn't normal. Whether that is worth bothering with is something we'll talk about in six months or so when I've logged everything. He is quite interested in how my girl-hormones affect my asthma and whether that can be helped at all, but we're going to do six months of HC and all the asthma investigations before we even think about tackling that.
The good news is that the endo dept at Jimmy's is the bee's knees! I went there today to clinic and they were fab. I also got recruited into a study into immune suppression / illness rates in patients on long term HC. That felt very positive.
All that said, it never hurts to have your toothbrush and a spare pair of pants. Phone/charger etc a given! Having said that, I deliberately went without any today
Good luck on Thursday - let us know how it goes!
Cx
I love how much they are stumped by your 'normal' MRI makes me chuckle! Think i'll take the basics, i really never trust them not to keep me, i'm having it tested by the resp day unit - not 100% sure why but dont want to question the wisom of docs, so will be taking the walk there VERY slowly - i was quite pleased you werent on the resp ward as i really dont trust my lungs to behave in a way that would allow me to leave again, and its gotta be embarrasing to come in as a visitor and get admitted!!!
I knew you were impressivly ill by the time you got seen (its all those panic attacks you just need to calm down! lol!!!) so no surprise you had to stay, wasnt sure what the protocol was in those of us a little more stable! hehe!
Glad the endo team is good - if im going to have another dept involved they might as well be decent. What kind of things did they discuss for your first clinic appt? (if you dont mind!)
Thursday has to be cancelled - another play off between breathing/adrenal glands, resp team is always gonna go for the breathing side of things i guess, so stuck on pred till weds, mum spoke to a lovely nurse on my behalf (on the theory that i could delay the need for any steroids by sleeping all morning until someone could decide what to do) who said she'd make sure i was tested asap but said still to take the 40mg of pred till weds - so fingers crossed they'll squeeze me in monday or tuesday - will just have to make sure my lungs behave until then! I'll already be on 20mg of hydro by then (although all taken when i wake up) so hopefully there will just be some shuffling around of times etc and i'll be freed to go for good behaviour I wasnt dehydrated last thurs when i was taken in, and they must have done the basics for my blood so i suspect they were all fine - so hopefully should be ok in that dept too
ps love your description of ACHT, hope they put that in the text books!!
Hi JoJo
I've replied to you in this post in the medical section of the forum. Prob best to only post same message in one place or replies will get muddled
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im going for the wisdom of crowds theory!
you just need to calm down! lol!!!) so no surprise you had to stay, wasnt sure what the protocol was in those of us a little more stable! hehe!
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