tests for addisons and adrenal insuffiency

Hiya

I am new here

I have been told after just one blood test that I have low cortisol and this is due to inhaled steriods and that I have to straight away take high does of hydrocortisone tablets

I am under the impression that they need to do more tests first - could anyone advise me if this is correct ?
my only sympton is tiredness and fatigue

thanks a lot

[Shawe123]

On me they did a blood test AND an MRI to make the correct diagnosis. They might of even made the totally wrong diagnosis on you, some key symptoms are:
-nausea/vomiting
-  no appetite
-rapid weight loss
I think you should go back and have them retest you. Cortisol hormone is nothing to mess around with. If you take them and your adrenals are already producing enough you could possibly develope Cushing's syndrome

[rumpled]

I would not accept a diagnosis after just one test. Cortisol is a very variable test. The gold standard is a stim test and even that can be ... off - so you have to really test quite a bit. Plus you don't even know the source (which does not change treatment, but should be known as other issues can arise).

Is your sodium low? AI is a salt-wasting disease.

As Shawe said - replacements are a slippery slope, and if you take them without needing them, you can end up needing them forever or end up with Cushing's.

[harmony21115]

thank you so much for your quick replies

i got worse news today - apparently my GP has said that my levels are so low that no further tests are needed and that if I don't take high dose steroids i will die ! what makes this worse is that i am prone to steroid psychosis and the level they suggest will probably send me into hallucinations in about 3 days  - i am refusing the medications so will just have to wait and see ekk!
and in the meantime I am pursing taking this further via the PCT
thanks all

[rumpled]

A GP?
High dose???
I don't have adrenal glands at all - they are gone - removed - nada in there and I can go at least a week off all steroids (did it under supervision for testing). I can tell you that when I had my adrenals removed I was sure that I was going to die pretty soon - but I am still around.

The only time a person is in real danger is when you are sick and the body is stressed. I have come close to dying when I had a fever and I had a a {cough idiot cough} resident who decided that despite my medic alert bracelet saying I needed stress dose steroids, a letter from my doctor saying I needed stress dose steroids when I had a fever and my records when I came in that said I needed emergency medication as needed and that my adrenals were removed that I was in fact, NOT, in his estimation, having an adrenal crisis and he thought he should not give me steroids. I was pretty close to death when finally someone with brains took over and I recovered - but it took a long time.

BTW I take a physiologic dose - a REPLACEMENT dose, not a high dose. High doses are reserved for other purposes like immuno-suppressive issues asthma, allergic reactions, auto-immune diseases and can give you steroid-induced Cushing's. Having had Cushing's - it is nasty.

It just is not normal to take high doses for replacement unless you have other diseases that use the steroids (in which case that is probably the cause of the AI anyway). Your inhaler may be the culprit.

I would likely ask your doc who gave you the inhaler to give you a non-steroidal one or wean you off and/or lower the dose and combine it with a non-steroidal one - are there any other options on your inhaler?

I just find one (1) test to not be enough to take more steroids - and a high dose... eh... no. IMHO.

[harmony21115]

thank you for your advice

I am now going to have an ACTH test and some other tests before anything else is decided as still refusing the steriods

[TerryAnne]

I'm with Rumpled here: if you were that bad, you'd be having signs of an adrenal crisis. I've had a few small ones and can tell you that you'd know. Plus, you really don't want to start on a super high dose if there is a problem; building up helps your body.

As a plus: if you do have AI, hydrocortisone is pretty safe. It's bio-identical to cortisol - what your body makes (or not, in the case of AI). You may not have any steroid-induced psychosis problems, as it's not normally registered as a foreign substance. Some AI patients cannot take it, but it's usually because it is not strong enough or the half-life is too short (4 hours). Most tolerate hydrocortisone well.