Recently been diagnosed with adrenal fatigue due to long-term Pred use by my new respiratory team and also osteopenia after a Dexa scan after the GP picked up on the Pred as a risk factor, now on Alendrotnic Acid. Also got a small cataract developing again probably due to the Pred which I've been on daily for 12 months as well as several emergency courses.
I'm just wondering: who usually diagnoses/monitors things like this as I'm wondering why my last respiratory team didn't warn me or assess me for these things? I'd never heard of them until I switched to a new hospital. They also didn't give me a steroid card either which I think they should've done as I was on daily Pred. I feel like opportunities were missed.
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Did your team say adrenal fatigue?! Or did they mean actual/potential adrenal insufficiency? Adrenal fatigue is not the same thing! It floats around a lot on the internet but isn't recognised as a legitimate medical diagnosis for a variety of reasons, and there's a lot of very dodgy non-scientific stuff out there about it. They definitely shouldn't be using the term adrenal fatigue at all, never mind interchangeably with adrenal insufficiency.
If they haven't officially diagnosed you with adrenal insufficiency (I'll call it AI now to save typing), they may have meant you have some features of it due to pred use but not enough for a full AI diagnosis (a bit like 'pre-diabetes' - which in my understanding, please someone correct me if I'm wrong, is when your blood sugar levels aren't the best but don't quite meet criteria for diabetes). However, that isn't 'adrenal fatigue'.
Whether you have AI or suspected AI, your new team should be referring you to endocrinology to test and manage it. Asthma teams should be able to pick up on the risk of AI happening (eg when planning pred weans), and be familiar with the basics. However, they generally shouldn't be trying to manage/diagnose it themselves (especially not if they use the term adrenal fatigue to refer to AI). Although I don't know much about it, the same goes for the cataract - you need to see an eye specialist/optician for that, whatever the cause.
I have AI and was referred by the asthma team to endocrinology for testing and management. This post has more detail: it may not all be relevant to you at the moment but hopefully it's helpful, and has some links you may find helpful: healthunlocked.com/asthmauk...
EDIT to add as I realise I forgot to say re the steroid card: yes you should have one, and if adrenal insufficiency is diagnosed you should really have some kind of medical alert you wear on you, like a bracelet or necklace. These can be bought fairly cheaply eg from Amazon, you don't need to spend loads on a Medic Alert subscription.
Yes an optician should be monitoring eye health including cataracts. Cataracts may not develop further and, if they do, may well do very slowly over many years - but an optician still needs to monitor it.
Hi there, I have read your expansive essay on adrenal insufficiency, but not all the Q&As. Could you describe the symptoms of AI ? Is general fatigue one of the symptoms ? Is AI brought on by using steroids or by reducing steroids ? Can inhaled steroids bring on AI ?
Hi - this link from my post may help for symptoms (as I mentioned, Addisons disease is often used interchangeably to refer to all types of AI, and this link includes steroid-induced AI): hopkinsmedicine.org/health/...
As my post mentioned, AI is brought on by steroid use because steroids basically take over the system and provide cortisol for you (often too much cortisol). This means that when you reduce/stop the steroids, your pituitary gland and adrenals don't register that they need to work together to start producing cortisol again, and you're 'insufficient'. This can be reversed in some cases (if steroid-induced; primary AI where the adrenals stop working generally cannot). However, if you've had a long time not producing your own cortisol because of high dose pred, your adrenals can atrophy and stop being able to produce cortisol however much they're stimulated by the pituitary. In this case AI tends to be more permanent.
I realised I hadn't said anything about whether inhaled steroids can give you AI in my post, so thanks for bringing this up! The answer is yes, but it's not common. I just added this to the long post (it's blunt but I feel it needs saying this way, based on various posts I've seen on this forum):
It is possible to get AI from inhaled steroids only, but it is fairly uncommon and would usually happen with higher doses. This isn't a reason not to take your inhaled steroids: AI can be managed, dying from asthma because you were worried about the risk of AI cannot (to put it bluntly) - so don't run the high risk of a serious asthma attack to avoid the much lower risk of AI from inhaled steroids. (This actually applies to all kinds of steroids: if you need them for asthma, you need them).
Hi ... I’ve been on long term prednisone daily for 5 years at the most part at high dosages 20/30mg daily , I also have adrenal issues including fatigue .. I was referred on by my respiratory team to a specialist an endocrinologist,although because of covid I’ve had to wait almost 12 months for an appointment.. funny enough it’s next week ..
What are your main concerns about prednisolone ? How can the usage of prednisolone be reduced ? When my asthma gets out of control, prednisolone seems to be a life saver, perhaps literally.
If you read the patient leaflet it will give you a good idea of the potential side effects. They are more likely to occur with long term use, however, everyone responds differently. That's why it's important for our doctors to monitor our health in terms of steroid side effects if they prescribe them on an ongoing basis.
Lysistrata wrote everything I was going to! Adrenal fatigue is not a medical diagnosis but if you have adrenal insufficiency you need to be on hydrocortisone asap or it could be life-threatening (I have it). Have you had your cortisol levels checked? Did they share the number with you if so? If you do have AI you need to be on hydrocortisone and yes, you should definitely have a steroid-dependency card in your wallet at all times.
HiThanks for all the replies. I probably should've been clearer - I was diagnosed with low cortisol levels by my new respiratory team and put on a 5mg Pred daily dose to counteract this while I am tried on Xolair, which is ongoing. I think I used the term 'adrenal fatigue' as fatigue is what I tend to feel but I know this is a different issue. The optician picked up the cataract as I developed blurred vision in my right eye and she has advised to monitor it and review in 12 months.
The question really was prompted as I'm considering making a complaint to my last respiratory team as I think these issues could've been prevented or at least picked up and monitored more quickly. I was left on Prednisolone for months without any contact or monitoring and this has left me with some debilitating symptoms, which prompted me to ask for a referral to another respiratory team. Knowing what protocol - if any - that may be in place to diagnose/monitor cortisol/bone density problems in people on long-term Prednisolone would help me to understand if they followed their procedures (or not.) So I'm keen to hear other people's experiences on this.
LysistrataAdministratorCommunity Ambassador in reply to ccccc
Ah I see! I'm actually relieved to hear your new team didn't use the term 'adrenal fatigue' lol as it made me wonder about them.
I'm not sure about the exact protocol for when you should have a DEXA scan, but I've had two since starting pred (since the second one was good they don't now need to follow up for a while).
For adrenals, they tapered me off pred *very* carefully and went slower when I needed. I can't remember if they checked cortisol then but they were certainly aware it was an issue. I then discovered that I still needed to taper off short courses, even though I got the usual line of 'you don't need to' - maybe people who don't have many don't need to but I did. *Not* tapering after one short course seemed to tip me into adrenal insufficiency and when I mentioned the symptoms and the timing to my asthma consultant, he told me to stay on 5mg pred and referred me to endocrinology for testing.
I do feel that you should still be referred to endocrinology for management of the low cortisol, even if you don't stay under them indefinitely. If you're on pred for your adrenals, then Xolair might help you not need more pred for asthma but it isn't necessarily going to help the current issue. For a start, while 5mg pred should cover your adrenals for safety, it's not necessarily the ideal treatment. I really struggled on that because whatever they said, it didn't last all day and I would crash out in the evening and felt really tired a lot. Endocrinology put me on hydrocortisone (which is preferred because it's closer to your natural cortisol than pred is) and we discussed when to take doses and how much time between them. I split my dose with the biggest in the early morning, when you naturally have a surge with healthy adrenals, then half that around 11am and the rest around 4pm.
Endocrinology also discussed emergency procedure and provided me with an emergency injection, as well as training me how to use it and when. My asthma team mentioned none of that and I feel like they didn't always get it eg one time they did a cortisol test without telling me, at around 11.30am. I was on my usual hydrocortisone and it was several hours late for a 9am test (which is when you're meant to take it) so of course it was fine! The asthma nurse then said well I don't know why you even need hydrocortisone, your levels are fine. Err yes...when I take hydro?! This didn't fill me with confidence in their ability to manage that side of things, and I was glad I had endo. However, they were at least alert to the possibility and quick to refer when I needed, unlike your previous team!
thanks for your reply, I have the same issue where even with 5mg in the mornings I still feel quite tired especially toward the end of the day. The GP tested me after Xmas and I still had low cortisol, the results of which he sent to the hospital, whose response was basically "yes we know" and that was that! Nothing has been said since. I get the impression, as you say, that as long I'm not having a full-blown adrenal crisis they are just happy to leave things if and when the Xolair kicks in, then try to taper off. But I am concerned as to how long that will be and I know from other posts on here that some people's adrenal glands stop working properly. So I think endocrinology is my next stop. I get the feeling it may put the respiratory team's noses out of joint as in my experience they hate patients coming up with their own pesky ideas but I feel like I can't let this slide .
Each area will probably have its own specific guidelines regarding monitoring people on long-term steroids or frequent short courses. But that being said NICE does produce some national guidelines that teams might choose to follow.
I've had a look and there isn't really anything regarding cortisol monitoring other than being aware of the risk of adrenal issues when tapering and testing cortisol levels when someone is at a physiological dose of steroids if someone is having issues.
There is however a fair bit about bone density. They recommend that anyone with a major risk factor for a fragility fracture (basically a fracture caused by something that wouldn't cause a fracture in someone with normal bone density) should have a DEXA scan or at least have their fracture risk score calculated. And I think they say that regular steroids equivalent to 5mg prednisolone daily or 7.5mg prednisolone daily over 3 months counts as a major risk factor (and the fracture scores normally underestimate the effect of steroids so they generally just tend to go for scanning people).
Unfortunately even with steroids as a risk factor I think teams often don't think about bone density if you're younger than the "typical" patient with osteoporosis - I've had 2 since being on long term prednisolone and have had to ask for/chase both myself!
Hope that vaguely makes some sense - it got a bit waffley!
thank you, that's very useful, I will look at the guidelines now - the bone issue, it was actually the GP who rang me out of the blue at Christmas and mentioned that about the 3 month steroid issue and put me on Alendronic Acid, this was after 9 months of the hospital prescribing me daily steroids who hadn't said a word about it. Makes me wonder what would've happened if he hadn't have picked up on it...! I got a DEXA scan which, like you, I had to chase up myself, which found osteopenia and aged 39 it was a bit of a shock, but the aleondronic acid seems to be helping as my joints aren't as sore as they were.
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