I apologize in advance for asking this question because I'm sure it's been asked loads of times before, but I simply cannot find answers via searching.
I was at 3.5 mg PRED/day, having tapered from 60 mg about 28 months ago from a confirmed GCA diagnosis. I was feeling exhausted, sweaty, wanting to sleep very often and asked my Rheumy if he could order some kind of adrenal insufficiency test. He responeded positively, and ordered a "Cortisol Test." Results were 5.9 ug/dL -- at the lower end of "acceptable," which seems to be anywhere between 5 and 25 ug/dL.
He had his nurse call me to tell me to continue decreasing my prednisone dosage since the results were in acceptable limits.
Here's my question: was that an adequate test, or is there some other test that ought to have been done to assure the adrenals are performing properly?
Thanks so much, and sorry if this has been covered before.
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montebello
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A followup question -- after the Cortisol test mentioned above, I upped my PRED dosage from 3.5 to 8.5 due to flare -- very tender scalp, headache over the left eye, ear pain. Within 1 day, all symptoms disappeared (whereas I had been dealing with them for about 7 days until upping the dose). Also, the feeling of fatigue vanished.
I'm already back down to 4.0 mg/day after being on the higher dosage for 4 days, and I'm feeling awful again -- not the scalp pain, etc., but the fatigue.
Is this confirmation that I have adrenal insufficiency do you think?
You aren't to take pred in the 24 hours before the blood sample is taken - but it won't have made much difference, and in fact the cortisol would, if anything, been slightly higher.
Not really - it shows you are struggling with your corticosteroid level but if you up the pred, there is no stimulus for your body to produce more cortisol. It isn't a simple problem to solve. It requires some degree of discomfort to get things to work again, if they are going to. There is a chance they won't, especially as you age further.
An alternative when the situation isn't complicated by PMR/GCA is to switch to hydrocortisone, usually dosed 2 or 3 times daily and that is what the endocrinologists will suggest if you get to them. But it isn't good for managing inflammation - and your underlying autoimmune disorder appears to still be fairly active so you would probably flare.
It is a question of patience I'm afraid. As so often in PMR/GCA.
There is no test as such to ‘ assure the adrenals are performing properly’.. the tests performed [ie. basal cortisol test and Synacthen test (ACTH) only show they are capable of working, not how well.
Plus you may not know until well after you have finished Pred [in some cases it can take up to 12 months] that they are back to full function. If you aren’t having any adrenal insufficiency type symptoms after that time you have ‘hope’ they are working.
But we do warn that even though you have finished the Pred, it is wise to remember that although they may seem be coping quite well on a day by day basis, an accident or something very stressful may indicate they aren’t 100%.
It is difficult to say for sure - it is a decent enough test result for someone still on 3,5mg pred a day which can still suppress cortisol production. It is equivalent to 160 nmol/L and using those units, under 100 is definitely adrenal insufficiency, , above 450 is normal and a synacthen stimulation test is not required. If the result falls between those values, then a synacthen test is needed to be more specific. But whether that is worth it at present is questionable.
As I say, you are still on a considerable dose of pred in this context - ask SnazzyD about her experience. As you taper the pred further, your baseline cortisol level will improve as well as it is suppressed less. The baseline cortisol test is enough to separate sheep from goats to some extent, But I doubt having the synacthen test will tell you any more while you are at this dose of pred. It isn't surprising you have a low cortisol. It will improve and you are on a good supplementary dose of corticosteroid for functioning day to day
The only thing you can do to improve the situation is to taper the dose of pred very slowly - small reductions in dose at longer intervals is what we suggest. Only the deficit of corticosteroid will stimulate the production of more cortisol. So you have to keep testing the water.
The HU search function is rubbish - it won't even find a post with the correct title entered as search item!!! If in doubt - look at the FAQs, we can't say that enough. The link is at the top of EVERY thread and in the Pinned Posts. Look under A for adrenals in this case. Learn your way around them - makes it easier to find things.
Thank you very much. You know, the units for all of these tests are confusing. My cortisol results were 5.9 ug/dL, and the units you are using are nmol/L. Can you please convert my reading of 5.9 ug/dL to nmol/L? I'm guessing the conversion is 59 nmol/L but could you confirm? Again, thanks -- and I'll not use the search function too much in the future.
To convert to nmol/L, multiply µg/dL by 27.6. Which gives you 164.5 nmol/L.. but as you took steroids before test, it probably wasn’t that accurate. Maybe request another in a few months or so
I just did in my reply. 5.9 mcg/dL is 162 nmol/L. It is the comparison that is important rather than the actual numbers and I know the nmol/L figures by heart!
It is pretty likely your adrenal function isn’t great, it stands to reason. Your adrenal glands have been suppressed and if you reduce your Pred faster than they recover their capability you will feel rubbish. Each time the Pred goes up they go back to sleep again, but if you are dealing with a flare, that’s unavoidable.
If you are one of those whose adrenal axis (the whole process not just the glands) is struggling 3-4mg can be plenty to suppress them so a lacklustre test result isn’t surprising. My Synacthen test at 4mg was not very good but the Endocrinologist said to keep reducing at 1mg per month. I declined to go that fast because I felt grim most of the time. Instead I reduced 0.5mg over anything from 8-14 weeks. Only by having a cortisol deficit will the system realise it needs to work. This takes as long as it will take which in my case was many months, including 18 months after stopping Pred. I reduced my activity and lead a rather boring life in order not to stress my body in order to not go into a crisis and have to increase my dose. Life didn’t always comply. What I didn’t do was up the dose to do something I fancied or avoid putting someone else out.
However, if you are skirting on the edge of a flare, you need the dose you need for that. Whatever the case a slow reduction using small drops will help either case.
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