I got a phone call from my asthma nurse yesterday to come in straight away as the most recent blood tests showed my adrenal gland was not working. They have started me on hydro cortisol and given me all the warnings about not stopping it and doubling when ill which was scary. I am going to see a specialist when an appointment comes through and my cons is writing to the GP.
This has all been a bit of a shock I have felt very unwell but was starting to think it was all in my head. Does anyone else have this and can advice me and how long will it be until I start to feel better? Will this change my asthma control and treatment? Do I need to get a med bracelet?
My son - 9 - has this, due to high asthma steriods.
Once you take the hydrocortisone, symptoms tend to go and he felt better quite quickly, though may take some time to get the dosage right: time of day (best is 3 times a day) and the actual amount.
it was really scary at first, but we are used to it now and I have to say thank goodness that there is good treatment in hydrocortisone - it does really help.
addisions uk self help group is good for background info, while not quite the same as Addisions, much of the info is applicable to adrenal insufficiency - I presume this is what you have, by the way.
My son does not have sufficient cortisol to deal with physical stress.
Doubling up when ill is ok once you get the hang of it, and i does work too.
It takes time to understand it all and deal with it, but as I say we are used to it now and it doesn't feel as bad now and my son has quality of life again.
Hi,
forgot to say:
- probably is a good idea to get medialert bracelet
- my son felt better quite quickly (days - weeks) but does take some time to get dosage right. I'm sure that will be easier for you as it's you that have the symptoms - we were reliant on what my son said.
- asthma treatment: we're seen by different teams for each - adrenal and asthma. Neither consultant makes any reference to the other treatment. Asthma medication has been the same - sometimes less in the summer, but then higher in the winter. The hydrocortisone doesn;t seem to affect the asthma in any way; the asthma is the same. At least that's what it's like for my son!
Hi, firstly a massive hug for, what I know, is a huge scary shock
My daughter (aged 3) was diagnosed with adrenal insufficiency in august. Her early morning cortisol was just 16! (apparently they anticipated it nearer the 700 Mark!)
We too were rushed back into hospital. Was very scary also, to hear about the not stopping or missing the meds, the diff doses needed when ill etc, in addition to the injection kit.
Touch wood, we haven't yet to administer the injection but have had to double/triple the dose on several occasions. (due to high temps or vomitting)
As jackie says, the Addisons uk site is a good one with info regarding Addisons/adrenal insufficiency. It also recommends to wear a medic alert bracelet stating you are steroid dependant.
With regards to health effects, my daughter lost a great deal of weight but is slowly putting it back on again now. Her blood glucose levels have been effected and they fluctuate between high and low so we see a dietician to try and keep them stable. She does get tired very quickly and hasn't got as much stamina as we hope for in a 3 yr old. It can also take her a while to recover from physical or emotional stress.
Her asthma is treated separately. However we hope that eventually we can stabalise her chest and therefore kickstart her adrenals once again.
I hope you begin to feel better soon and that it all becomes second nature to you very soon.
Lots of love,
Emily
Hi was wondering if anyone had any advice. Brittle asthma for 15 years, on and off steroids, high does, short (ish) courses. I am now on a drug study, asthma, what asthma?? However was suffering joint pain, tired etc. bloods normal, including RF and auto immune , adrenal function test, short something? Showed adrenals very asleep, they have put me on hydrocortisone 20mg every other day,the day off to try and wake yo my adrenals. They did discuss morning, afternoon dose etc and will be reviewed, said it's very normal after long term steroids.
So my question, any dose that people find better? To mimic the natural steroid, side effect compared to pred (40mg) and anything else, natural I can do to wake these buggers up and give me some energy, typical, asthma under control for first time in years, no hospital admissions but could sleep standing up!
Hi JoJo
There are a few of us here with adrenal insufficiency - myself, curiouser and Soph. I was diagnosed recently after having had a terrible year with my physical health. The test you are referring to is a short synacthen test, which should be done first thing in the morning - 9am ideally as this is generally the earliest a hospital will do it! They measure your baseline cortisol then give you a drug which should stimulate your adrenal gland to produce more cortisol. More bloods are then taken at intervals to see if your cortisol level has improved.
In someone who has adrenal suppression due to long term steroid use, usually the baseline cortisol is low, but the adrenal glands still respond to the drug and produce some cortisol. This is because in this type of adrenal suppression, the problem isn't with the adrenal gland itself, but with the pituitary not producing something called ACTH (which is what triggers the adrenals to produce cortisol). The pituitary stops producing it because it believes the body has enough cortisol already and goes to sleep.
In someone with primary adrenal insufficiency - also called Addisons Disease, the problem ismwithnthe adrenal gland itself. So baseline cortisol will still be low but the level of cortisol will remain low even after the drug has been given to stimulate the adrenals to produce cortisol.
My morning cortisol was very very low at 11 (9am cortisol should be above 590 to absolutely exclude adrenal insufficiency).
I am now on lifelong replacement therapy - that morning cortisol above was after almost 10 months with no oral steroids and my endocrine system hasn't recovered (in fact it's got worse). I can't comment on your dose or regime since they are trying to achieve a different outcome for you and it's outside of my experience and expertise.
You can't compare pred to hydrocortisone - 5mg of pred is equal to 20mg of hydro and is much longer acting than hydro.
Most people find that once on replacement therapy, they feel less tired and other symptoms reduce.
Do you know what your results were from your blood tests?
Lynda
Thank you Lynda that was really helpful. I am under a really good resp asthma and allergy consultant and am on a study for my allergic asthma which has been amazing, downside is that I know longer needed my once a month weeks of high dose steroids (prob enough to keep me ticking along) so has started to show signs of adrenal issues, I haven't been referred to endo as this stage although I did here my consultant getting advice from one on dose etc. they think it's unlikely it will wake up but worth a shot. I'm not sure what the levels was as although I feel fully informed about asthma this is a new one (yay!) I think the plan is to do every other day, re test in four months and see. My main prob is joint pain and tiredness, amazing to be breathing after years of being strapped to a neb both days but could do without this... Still such is like, if I handed taken so many of the little Red Devils I probably would be a little less alive!
I am at the hospital this week for magic asthma drug so will ask re levels and see what I can find out,
Ooh and just to add test was done after lunch, first bloods, then injection, half hour then bloods, I seem to remember when I had it done several years back it was first thing in the morning and after I was given injection to stimulate adrenals I had two or three blood tests taken at half hour intervals?
Yes it should be in the morning first thing as cortisol levels peak in the morning, with bloods at intervals afterwards - lab reference ranges will relate to an early morning cortisol. Not sure why on earth they would do it after lunch.... Tbh you would be much better off getting your GP to refer you to an endocrinologist as there are many other hormones which can be affected by pituitary related adrenal suppression - my resp centre did my initial short synacthen test but they don't have anywhere near the level of expertise that a consultant endocrinologist has, to interpret it. That's not a criticism, they just haven't had several years specialist endocrinology training! I mean, you wouldn't see an orthopaedic surgeon for your asthma would you... No different. Based on your situation it's entirely appropriate for you to ask your GP to be referred to an endocrinologist. If I had done that in the first place I would have not been in a pickle for so long.
Have they discussed sick day dosing with you, steroid cards, medic alert bracelets or emergency injections?
Thank you for that, I will talk to them this week, they are good and may well plan to refer me but if not I can see my GP, yes I imagine it is quite complex so expertise is needed. No I'm not sure why the test was done so late, and only one blood after injection, I do remember it being taken two or three times when tested before. Again I shall ask, well I guess I should be happy that after so many years my asthma is under control, just still can't get my head round it, not wheezing all day is a first for me, and I did know the risk of long term steroid use and our poor adrenals, not a lot I could do really.
Any advice on lifestyle or diet that helps at all? They did mention splitting the dose of hydro morning and afternoon, also not sure the every other day this is good. I am dipping all over the place!
And no to all of the above, well except the card, always had one of those anyway, I think they are reviewing me this week, so may well do that. I have read about it, again I guess endo will be the best support for advice,
When I saw the endo, they did an entire raft of blood tests as the pituitary produces so many different hormones - it's not unusual to have other issues alongside adrenal insufficiency. They will also usually look at things like osteoporosis (which I have) as this is another area of their expertise and is a problem if you have repeated long term steroid use for asthma. Have you had a bone scan (dexa scan) as you've been a chronic steroid user? Or been placed on preventative treatment (usually bisphosphonates such as aledronate and a calcium & vitamin D supplement). It's a much bigger picture than doing a short synacthen test. I'm puzzled why they only did one lot of bloods after giving you the drug...
Understanding sick day dosing is really important. In a normal body, the adrenals produce more cortisol as required when you are unwell. If your adrenal system isn't working, this doesn't happen and you can rapidly become unwell - it can lead to something called an adrenal crisis which is dangerous.
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May not be asthmatic but need advice! 
In need of advice before my next specialist appointment 
Adrenal insufficiency: a general information post (does not replace medical advice)
Bit of advice needed please.
