I have recently had a basal cortisol test and my serum cortisol level is 296 nmol/L. I have an appointment with my GP on Wednesday to discuss. My test results says that this is normal but on reading information on the Internet I’m not too sure that this is entirely correct. I have found the following information on the nice.org.uk website.
The Addison's Clinical Advisory Panel suggest that adrenal insufficiency is unlikely if the 8–9 am serum cortisol level is more than 400 nanomol/L (unless the person is acutely unwell) and that further testing should be undertaken for people with a serum cortisol level of 100–400 nanomol/L
I’m not sure my GP is up to speed on matters concerning PMR as when I mentioned a Synacthen test a while back she had never heard of it.
I’m on 2 mg Prednisolone and have been for the last nine months. I asked for the morning cortisol test as I’ve been struggling to reduce my dose during that time. I’ve also been feeling tired and have muscle aches although my ESR and CRP levels are fine.
Do you think it is reasonable for me to ask for a Synacthen test when I speak to my GP?
Has anybody had a Synacthen test and was this because your morning cortisol test results were between 100 and 400 nanomol/L?
Any advice would be gratefully received, thank you.
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Floridafan
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2mg pred is still enough to suppress natural cortisol production in some people. While the 296 figure is not "normal" I think it suggests that you may manage to get lower - PROVIDED you can put up with the discomforts involved. It can take up to a year after getting off pred altogether before things are back to normal.
Thank you for your reply. It’s just knowing whether the symptoms are due to steroid withdrawal or low cortisol. I’m not sure I know what the difference is. I really don’t want to tempt a flare now I have managed to get down to 2 mg
They are much the same at this stage. You have to use as slow a slowed taper as you can manage and for the smallest dose change - and that pretty much excludes your body protesting at the change of dose as opposed to it being too low as dose whether for the PMR or for adrenal function replacement.
SnazzyD has written loads of really good posts about it - have a look at her profile
Well it isn’t normal, but it might be said, to be expected. Mine was below 400 when I was on 4mg but the Endo said to keep reducing because they thought that the adrenal glands would eventually respond. However, one does have to watch the symptoms and be aware of increasing severity of insufficiency.
For me, things had improved by 1.5mg. How fast have you been reducing?
The GP might not know the test by that name perhaps. They should know a test of that type exists and it is nothing to do with PMR. Adrenal insufficiency is a by product of the long term steroid use and other diseases.
I’ve been reducing very slowly using the DSNS method. I’ve been on 2 mg since last March, trying to reduce firstly by half a milligram and then I tried quarter of a milligram each time. I gave up reducing for awhile because of holidays and then Christmas but would like to try again hence asking for the cortisol test. Each time I tried reducing I didn’t feel as well as I did on the higher dose so eventually back to 2 mg again. Perhaps I should just plough on now I know my ESR & CRP levels are fine.
Definitely agree about the cold weather, last summer I planted over 100 bedding plants and painted the fence. At the moment my muscles are aching if I do a couple of hours housework, roll on Spring!
Feeling less than great with reductions is par for the course and to an extent one has to put up with it. This is providing the PMR is fine. Each time you drop you are setting up a deficit of cortisone to try to trigger the body to make its own cortisol. Therefore you will feel off until it happens. The trick is dong it slowly enough to make it bearable and not trigger an adrenal crisis. The lower I got the slower I got.
l’ve just had a phone call from the Rheumatology Nurse saying DrS has reviewed my 9am Cortisol Results & l must not reduce any further (5mg) before l see him in February.
Interesting…….did the nurse tell you what your cortisol level result was? My GP thinks my result 296 is ok but reading on the internet I’m not too sure. When I mentioned this to her she replied that she would speak to an endocrinologist she knows if she happens to bump into him!! Helpful 😱
I tapered off pred too fast last year and had a synacthen test in October, about 2 weeks after my last pred dose. Came back 253 basal and 314/387 with stimulation. At the time endocrinologist said was an encouraging result after being on pred since 2015. I lasted until late December when familiar PMR symptoms returned quite strongly. I'm now following dsns taper as agree hard to distinguish withdrawal from real symptoms. Aiming for lowest stable dose that maintains quality of life, which probably will be 2-5mgs I'm guessing, but will take all this year to get there, no rush this time. Hope this helps.
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