So I recently got given a steroid card after a increase on my inhalers (apparently I should have had one on the old inhaler too) and after a bit of research on the symptoms of adrenal crisis I'm beginning to wonder if all the steroids I was given as a child did some damage.
I've been increasingly having medical emergencies where I suddenly get very ill with extreme diarrhoea, severe abdominal pain, tachycardia, pouring with sweat, dizziness, confusion feeling of doom ect and then collapsing. I'm pretty much getting bounced between specialty thanks to the current problems with the nhs and the fact that after a rapid escalation (within minutes) my body eventually fixes itself? I'm left really tired and shakey but no longer in danger with ok ish obs. Sometimes I get a repeat 'attack' within 72 hours with the same symptoms and rapid escalation. Obviously the concern is without knowing what's happening and how my body's fixing it there's no guarantee it's always going to be able to fix it... but I'm left unable to do a lot as even if I'm still severely ill when paramedics arrive, by the time they get me to hospital (i live rurally) I'm recovered from the worst of it and without any diagnosis I'm deprioritised in a&e so any tests are run about ten hours later no matter how hard I try to get them to take a blood test when I arrive. (My GP has asked them to they just ignore it)
Every time my GP tries to refer me to hospital they cancel the referral insisting it's another departments responsibility without actually passing on the referral. They're not supposed to do this but they keep on doing it anyway! Every a&e Dr decides its related to a different system and I need a referral to that department but that's up to my gp not them. They tell me there's nothing a&e can do while I'm not in a acute episode but I'm not choosing to go to a&e! I'm collapsing and ppl are understandably calling 111 for help who are sending a ambulance and the paramedics insist I go to hospital. I'm in a tricky situation pretty much. I've been passed between gastro, immunology, haematology, cardiology.
I have not yet tried endocrinology because I asked my GP to run a 9am cortisol and when it came back fine I was happy that was ruled out. However. I'm now beginning to have doubts and wondering how accurate a test it is, but I'm struggling to find many papers on it. (If anyone has any sources for sensitivity/ specificity they'd be appreciated!!!)
Mine and my drs best guess was these are anaphalactoid reactions related to food allergies. They seem to happen when I'm stressed/exhausted and I've been warned before that can make you more likely to have a major reaction. The only problem is, I'm sure that I'm avoiding the foods im allergic to! I'm taking my daily allergy medicines so there's no real reason for these 'attacks' to be so uncontrolled. this whole thing is complicated by me having a systematic allergic condition that the allergy consultants refuse to see me for tbh. I was seem by a consultant diagnosed and put on medication years ago but then I was discharged and it was left up to my gp.
Anyway. After looking up the steroid card I'm wondering if we were barking up the wrong tree. I'm clearly producing some cortisol as it's showing in the test, but is it possible asthma treatment from when I was very young has created some kind of issue with my stress response? Or am I reaching and asking for a endo referral is a waste of my time? Whenever I read about asthma patients with adrenal issues the case studies all seem to show people much older than me who started steroids much later. I'm only in my 20s, but I've been on and off steroids since my asthma was diagnosed when I was a baby. If anyone knows of any papers/case studies that might be more relevant to my situation it would be much appreciated!
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bluecar15
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It's not borderline or anything if anything it's high, just above the upper reference limit so that's why I wanted to look in to how accurate they tend to be. Yeah they check everything, my hearts regular just fast and my blood pressures low but then regulates after the extreme symptoms start as I start feeling better
One of the paramedics did mention a adrenal crisis but didn't follow it up and tbh I didn't know much about it at the time and was feeling pretty crap lol so I didn't chase it/ask her. They test my blood sugars too and they tend to come in low but that's possibly the diarrhea?? I'm def not diabetic or anywhere close to it
Have you been referred to an Endocrinologist? It sounds like you are having an adrenal crisis. Have a read of tertiary adrenal insuffiency. The red steriod card tells ambulance staff what treatment you need and what a hospital needs to do for you on arrival.I have tertiary adrenal insuffiency as a result of years of prednisolone and steroid inhaler use. Happy to answer any questions you have.
How do you know the cortisol came back fine? Are you on any steriod tablets? Are you on Steriod inhalers? Are you on Steriod creams? Did you use any of these in the 24 hours prior to the 9am test? Please push for an Endocrinologist referral as you would benefit from at short synachen test to make sure your adrenal glands can respond to stress such as an infection, virus, pain or emotional stress.
I agree - the 9am cortisol test may not show everything especially with any recent steroid use. And it doesn't show response to stimulation. My first 9am results on cortisol tests were always above the threshold for immediate diagnosis of adrenal insufficiency, but below what they should be.
On short synacthen tests I failed to respond to adrenal stimulation and so was diagnosed with adrenal insufficiency caused by steroids (in my case 2-3 years of some continuous use and a lot more short courses of oral steroids), I've now recovered, probably because I don't use oral steroids since they don't work for my asthma anymore. I was 32 when I was diagnosed.
My asthma nurse at the hospital once randomly did a cortisol test at 11am and tried to tell me that I didn't need to take hydrocortisone anymore because the results were normal. Of course they were normal - she didn't need to do the test and hadn't told me she was going to, so I'd taken my hydrocortisone and Fostair as usual that morning! I have no idea why she thought this was useful (she wasn't a very good asthma nurse either and this was way out of her area given I already saw an endocrinology nurse).
bluecar15, we can't diagnose and it may not be an adrenal issue but as juliesharp says I think it might be worth pursuing endocrinology to see if this could be at least part of the issue. If you do have adrenal problems, they will kick in if your body is being physically stressed, so on top of any other problems. I always had issues when my asthma was flaring. This post may help re adrenal insufficiency. healthunlocked.com/asthmauk...
You may also find it helpful to chat with the endocrine nurse on this helpline (the pituitary one: pituitary.org.uk/helplines/
I called them when I didn't have a firm diagnosis and was wondering what was going on and the nurse was very helpful.
Thank you, yeah 100% not expecting a diagnosis from you guys, just didn't know if anyone knew of any other papers that might be more relevant to inhaled steroids/ younger age at diagnosis or related to the accuracy of the test as I'm not finding a awful lot as my searches are mostly kicking up papers related to primary adrenal insufficiency. I've got access to a fair few number of journals but yeah, not having much luck atm.
Honestly from what I understand it's unlikely to be a adrenal issue with my 9am cortisol coming in so high. I just want to know a bit more so I can rule it out in my own head really. Obviously shock is shock so a lot of things could be causing the weird symptoms I'm getting not just an adrenal crisis. I'm just kind of. Considering another angle and doing some research
I see what you mean re the 9am cortisol result, if you didn't take your inhalers as normal. It is confusing as it doesn't fit with the normal picture.
I feel like age is maybe a red herring when it comes to steroid-induced AI though - exposure is probably a better way to approach it, based on a manuscript I was working on last year (not a researcher just part of my job to write them). If I have a moment I'll see what the papers cited said (it was a review of sorts).
My endocrine nurse did say that steroid-induced AI is not well understood so I suspect a lot of papers won't really address it.
It might be worth chatting through with the endocrine nurse to see if she has any insights from a clinical perspective?
Yeah I suppose my concern with age was other factors affecting the presentation? If other hormones can balance Things out ect
The other thing I'm wonderimg about is how steroid exposure during development affects the stress response?? And if this would look different to what we tend to see in ppl exposed as adults. It's all just so new, until recently there was a large scale insistence that inhaled steroids had no affect, short courses of steroid tablets were no concern ect ect.
"My endocrine nurse did say that steroid-induced AI is not well understood so I suspect a lot of papers won't really address it."
Yeah this exactly. And that's why I'm being a bit more...over cautious with things and trying to understand it myself rather than taking my Dr at his word because tbh. This is the same Dr who's been telling me there's no way my inhaled steroids would have a systematic effect as they don't do that, who's now handing me a steroid card lol.
Its certainly rarer than with tablets so I'm not too concerned but I do get the idea this is being missed in a lot of ppl so I just want to learn a bit more so I can be reassured I'm unlikely to be one of those people. Maybe I'll give them a call and discuss the tests with them.
If anything it's high. It's close to the upper reference limit for a 9am cortisol at 528 nmol/L. I'm on the mini pill so progesterone only which as far as I can tell shouldn't affect things. I'm on steroid inhalers and a cream but I'm pretty sure I didnt use them for the day before the test as I was concerned it might affect things even tho the dr said it would be fine. I'm not really sure this is a endocrine issue with my 9am cortisol being so high
bluecar15 What was the numeric result of your 9am cortisol test?
Had you used your inhaler (or any other steroids) prior to having the test done (or even late the night before)? Sorry, not sure which gender you are - are you on oral contraceptives? Either can affect the results of the cortisol test. Similarly, if you are a shift worker, jet-lagged, or a serious insomniac, those can also affect the test result.
The symptoms you describe could well be caused by low cortisol. Once in adrenal crisis, it's necessary to inject to replace the missing cortisol, and often to have IV fluids (and potentially vasopressors etc). Replacing the missing cortisol is necessary regardless of the cause of the adrenal insufficiency. Without treatment it is unlikely to recover from a full-on adrenal crisis, so if your symptoms were caused by low cortisol, you were likely very close to crisis, but not quite there. Do phone 999 if you feel yourself getting those symptoms again. Because adrenal crisis is potentially fatal, I would strongly recommend that you have the early morning cortisol test repeated. Unfortunately, endocrinologists are very hit and miss on adrenal insufficiency - it's deemed a rare condition and a typical endocrinologist will spend most of their time seeing diabetes patients, with only 1-2% of their patients having adrenal insufficiency. Even for adrenal insufficiency patients, some endocrinologists only consider Addison's Disease and overlook other causes, including steroid use. For consultants from other specialities, and for GPs, they will have even less experience of adrenal insufficiency. So, always get the numbers from tests, rather than accepting the word "normal". The doctors might be correct, but they could be wrong (my GP tried to fob me off initially, when my cortisol was measured at 66nmol/L, a level at which NICE guidelines said I should have been admitted. By the time the GP paid any attention, it was down to 39nmol/L)
If your symptoms are being caused by low cortisol, be aware that infections (even a cold), stress, shock (e.g. car accident), dental work, etc., can drain what cortisol you have. Cortisol naturally varies through the day as well, which is why the test is normally done at 8-9am when (for most people) cortisol is at its highest. Later in the day, the level will drop from that level.
As Lysistrata mentioned, the Pituitary Foundation helpline is very good.
Oh yeah I always check the tests myself. I've got a background in science. If anything my 9am cortisol was coming in high, just below the upper reference range for the lab. They were 528 nmol/L. I'm on a progesterone only pill. I do have insomnia and circadian rhythm issues but it's my understanding the 9am test is looking for your highest cortisol so even if I'm out of sync they're unlikely to get lower, if those weren't my 'true' 9am readings cause my bodies out of sync presumably they'd only get higher.
bluecar15 I would still suggest repeating the test, in case it is a cyclic condition, again something the Pituitary Foundation should be able to comment on. There is one condition in particular that cycles between high and low ACTH, making cortisol swing high and low as well, so a single blood test might not pick up on it. Hopefully not that, but probably worth checking just in case. Hope you get to the bottom of it, whatever the cause
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