Please could someone give me a pointer to some info about the basal cortisol test that I can send to my GP to persuade them it is something that is useful to do on low doses of Prednisone?
My GP says it has to wait until I am off Pred, but I know from this site that lots of people have it whilst on low doses to get an idea of their adrenal potential capability.
I'm on 2mg now. Still get bouts of fatigue but good otherwise; I've tapered so carefully. I am worried as to what extent my adrenals are getting back into action and what would happen if I suffered some kind of major shock that required a full blast of cortisol.
But maybe I shouldn't worry? How many people have this test?
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Whether you have a good test result or not you still need to be wary of an adrenal crisis. A test will only tell you what your adrenals were up to on the day. It doesn’t tell you if they will pay out in all situations. Which is why you need to carry a visible medic alert for at a year (longer for me) in case of an emergency and have extra Pred near you at all times. I found with adrenals that one has to take every day or even hour with its own potential to be good or not. I’ve had good tests but given the wrong conditions over a sustained period I fell into a heap anyway.
Regards whether they should do the test. This says under 5mg
Thank you. That’s reassuring in a back to front kind of way. Didn’t know pred influenced my asthma too! Lucky I’m having a check up soon. I have a steroid emergency card in my wallet and a full pack of 5mg in my handbag!
I like a bracelet or necklace because if you are in a collapsed state the first responder will likely be trying to make sure they keep you alive which may mean they don’t have time to rummage through your belongings to find it. It means they can make sure that hydrocortisone can be given very quickly. I can say from experience that when one does have a crisis, it develops pretty quickly. It also means you don’t have to make sure your handbag is by your side.
I think you can get ones that just say on steroids or similar or what I had was one with the medic alert sign on the outside and inside was a slip of paper that I had my dose reductions on it. I wore it for 2 years after I stopped steroids because I was caught out a few times when I was feeling ok on an everyday basis until I had unusually stressful situations. The time I had to have an ambulance was when I had had a week of painful Covid. Because I felt so unwell I didn’t see it creeping up until it was too late.
My endocrinologist told me to have a bracelet engraved “Adrenal Insufficiency” which I did. I fell on cement and lay unconscious when the ambulance arrived. The paramedic told my husband “I wish everyone wore a bracelet”. I was given steroid quickly and all went well at the hospital. When tested for cortisol I was very low after 4 years on prednisone. I had symptoms of AI at 7 mg of prednisone. I started a AI crisis while being prepped for a colonoscopy after a long painful IV insertion. They had the hydrocortisone there to be given during the procedure but rushed to give it before the procedure. It was very frightening until the steroid helped me.
I don't think I would worry unduly if you can say that - if they weren't starting to wake up you would feel overwhelming fatigue and find it difficult to function.
I have no idea WHY doctors are so reluctant to monitor basal cortisol. I can't imagine they think that nothing happens at all until you stop pred and then suddenly it all takes off perfectly! As the pred dose falls, the cortisol production should at some point start up again and then they parallel each other but in opposite directions - if you see what I mean. And a basal cortisol at least gives you a bit of orientation. If it is starting up to at least some extent it does relieve your mind to some extent.
Thank you, that’s reassuring too. But I would like the ‘orientation’. This GP has managed things throughout, been very understanding up until this point. I don’t t know why she thinks it shouldn’t be done until off pred. I’ll see if I happen across another Doc. I’m not changing surgeries, it’s a good one. Maybe I just keep going, with care. I can do lots of things - eg dancing - just not too many in one day.
They know that pred suppresses cortisol production (that at least is a positive, some appear not to know THAT!) so the result is "unreliable" as long as the patient is on pred. OTOH, many doctors won't get into the synacthen test realm - even endocrinologists will do it at 3mg pred - because they can't do it, it must be done at a hospital day clinic. The concept that the basal cortisol probably saves money by showing the patient is definitely either OK or has adrenal insufficiency has escaped a lot of them.
The synacthen test may be more useful in that it shows the adrenals CAN produce cortisol when kicked hard with artificial ACTH - but it is the entire set-up that matters. You wouldn't say your car was fine and dandy just because it has a full tank of fuel. The basal cortisol shows if there is any life there even without the kick.
I think the short synacthen test is more useful than the basal cortisol test if you can get one done. Mine was arranged by the Endocrinologist and I was pleased to be reassured that my adrenal glands could still work when stimulated by ACTH. It helps me in plodding on with the OH SO SLOW tapering plan.
Thanks. Yes I thought the (cheap, easy) basal test came first and the results indicated if the synacthen was needed. I feel at this stage I’m even less likely to be granted the synacthen. Oh, maybe if I ask for more (synth) I’ll at least get less (basal)!
I only came to be referred to the endocrinologist last year for another matter and he arranged the SST. I have mostly plodded through my PMR with information and support from this forum.
I am having one this morning. The first one two years ago was when I was on 3 mg of Pred and told my (private wonderful holistic) rheumy that I was terribly tired. The result came back as way below the norm but the dreadful surgery I am with marked it as “abnormal but to be expected”. I sent it from my NHS app to my rheumy and she immediately referred me to a private endocrinologist.
Except the GP surgery was quite correct in that assessment, And there isn't a lot even an endocrinologist can do - except provide the emergency pack as they did for SheffieldJane when she was referred. And they didn't provide any explanation for that before it arrived!!
But the surgery was taking ‘Abnormal but to be expected’ no further - and when I had 9 hours of vomiting and diarrhoea they dismissed that too, I was told to drink lots of water. The Endo was not pleased at all and very subtly ticked the surgery off.
It is a major problem though - we on the forum always have that at the back of our minds, especially when someone on a low dose reports AI symptoms like that. The trouble then is that our links to SDRs includes the caveat, "ask your doctor" and they almost always sneer at the idea. And now the latest guidelines don't seem to me to emphasise the potential risks for patients on low doses of pred.
No, I am totally dependent on steroids now as I have Adrenal Insufficency, - ironically caused by steroids - a very nasty illness as you have to carry round an injection kit for an emergency injection - not an EpiPen sadly but in two bits. Yes a private endo can give you an injection but as soon as I had been to hospital to take the 3 hour cortisol tests I transferred to the NHS.
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