I've been mulling over whether I want or need to test my adrenal glands (via the synacthen/ACTH test) , having reached the 7mg Pred dosage level
I consider myself fortunate, as although having had my share of hiccups along the way, I've reached this point in the manner and time I had planned.
I've put together some thoughts and questions on the matter to try and help myself decide, I think I'd like to, but I want to understand as much as possible quite why, and I'd appreciate anyone's view on the matter.
Standard 'short' tests are the norm when testing the adrenal glands for insufficiency due to the effect of long term and/or high dosage steroid use, it is stated that there is no benefit in the 'long' test for this scenario (pathology.leedsth.nhs.uk/dn...
What is the proportion of positive and negative tests?
How accurate is the test, what is incidence of false positives and negatives?
'A one-off measurement of blood cortisol is not acurate enough to diagnose Addison's disease as it may be low from time to time in normal people' (patient.info/health/synacth...
Having a retake later I guess should give an aggregated better chance of confirmed status.
If positive - reassured
retake test when off Pred to confirm status,
I guess when feeling free of the symptoms of adrenal insufficiency?
If negative - forewarned and forearmed that ongoing low dose of Pred may be required,
to prevent Addison's disease
but would like to continue tapering to see whether it is achievable
or at worst find the minimum necessary dose
retake test to re-verify status
Thank's.
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hopeful-1
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You are just at the level where it starts to be important - but unless you have any REASON to think your adrenal glands are stepping up to the plate there really isn't a lot of point having the test done. All it can tell you is that your adrenal glands are CAPABLE of producing cortisol, it cannot and does not tell you that they actually are doing so in practice. It is not a simple case of can the fuel in your car get as far as the engine - it is, do all the other bits that have to work to produce power also function as they are meant to. The entire feedback system governing the adrenal glands is very complex, involving several organs and hormones. Until they are all doing the right thing, the whole thing will be a bit wobbly.
The best approach is to continue to reduce slowly - preferably not more than 0.5mg at a time, if you struggle with that then using the Dead Slow and Nearly Stop approach will usually smooth the path.
As you reduce, IF you then feel increasing fatigue or other symptoms of adrenal insufficiency the first thing to do is slow the reduction down - give your body a chance to catch up. Instead of reducing every 4 weeks, slow it down to every 6 weeks. But for many people the path is smooth, I got to 4mg without any problems at all. 3.5mg was a step too far and I knew I felt far better overall at 5mg so I went back, intending to wait a couple of months and try again. Then I had a flare a few months later so it all became academic!
If that doesn't work - then it is worth discussing having a test with your GP. For the vast majority of people reducing slowly enough will encourage your production of top-up cortisol to get back to where it should be. If you are taking 7mg of pred and feel OK - the chances are they are already are functioning. The amount of pred you absorb of that dose is somewhere between 50 and 90% - the physiological dose equivalent is about 7.5mg.
The short answer: I'd continue reducing slowly to 5mg and then review how you feel. If you still feel well, no increasing fatigue - try another reduction.
Yep! ...Bits of Deepest Dorset are a like that...much in keeping with the rest of the county, we're used to being in the slow lane...maybe helped with GCA!
Mmm... heard it all before - I'm okay at home, but son who has holiday home 20miles away pulls his hair out in frustration when he's down here with his b/band - due to be superfast in 2017!! sometime .
Mind he is a computer nerd (in the nicest possible way of course), with everything controlled by t'internet which drives his wife insane, she's a bit of a luddite - but he's a typical "got to have the latest whizz bang whatsit!" Didn't get it from his Dad, he was deeply in the luddite camp! Must be me then, again at fault! Good job I've good broad shoulders - both physical and metaphorical!
Yes they do. Basel last week and Moscow in 2 weeks but it leaves me thinking the aches are just tiredness and not reducing too quickly and gives me time to read every post on the forum!☺
From a personal point of view, I would say as you've only just reached 7mgs, you don't yet know whether or not your adrenal glands are going to wake up easily or not, so taking the test is a bit premature, you may find you are one of those people that doesn't have a problem.
As I understand it, and if I'm wrong very happy to be corrected, the ACTH test only proves whether your glands are capable or working, not if they actually are!
Mine took a long time to get into gear, but I was on v.high doses of Pred at the beginning and for a fair amount of time, but I never really doubted they would get their act together in time.
Its a personal choice, of course, but why worry about what may or may not happen, life's too short and it's a waste of energy in my opinion!
Continue reducing slowly, and see what happens, if you get to the stage where you're concerned then get the test done then!
PMRpro, in an earlier thread a year ago you mentioned a Leeds study that was doing synacthen tests as part of a study - would you know what the outcome was?
Having heard advocates for having a test at 7mg/5mg/3mg/suck it and see, I think I'll go with my original inclination and wait and see if I need to have it done.
Most of the quoted symptoms for adrenal insufficiency are the same as for Pred withdrawal, which I have experienced in a light manner a week or so into some of the drops, but if the symptoms persist then I shall request the test.
If the result is positive, I shall interpret the symptoms as Pred withdrawal and go back up a dose.
If the result is negative, I shall also go back up a dose, then venture back down even slower until I find the minimum acceptable dose, then request another test to corroborate that.
I'm using the DSNS tapering method moving down 1mg at a time over 52 days, which I've chosen over a straight drop of .5mg over 28 days, or a straight drop of 10%.
I've chosen this method for me because although it is more complicated on the face of it with a varying dose, compared to a straight drop, I create a daily schedule for each drop over the 52 days, and just strike off each day as it comes.
The total dose with either method is exactly the same, while the duration for the DSNS 1mg drop is 52 days compared to the .5mg drop being 56 days for the same 1mg drop.
The major reason for choosing DSNS is the very gradual manner in which the taper is applied.
To illustrate this, in the first week of a DSNS drop there is 1 day with the new dose and 6 days with the old dose, in the second week there are 2 days with the new dose and 5 days with the old dose, compared to two weeks with the new dose on a straight drop.
This means that in the first two weeks DSNS drops only 2mg, while the straight drop drops 7mg, which is quite a difference in impact.
No, sorry, still ongoing in Leeds. It got slowed down a bit when one of the team left for a better job.
Re DSNS - exactly"
Personally, in terms of adrenal insufficiency, I think waiting to see if the reduction doesn't bring mind-numbing and increasing fatigue with it is by far the simplest way of dealing with potential adrenal insufficiency. If you feel OK - it is very unlikely! And is far easier than haranguing a doctor to order one.
Although your post is 2 days old, I'm just seeing it now. I will share my experience with you as you ponder your choices.
I get my care at Mayo Clinic in Jacksonville, FL. Their rheumatology and endocrinology departments are both very adamant that a Synacthen test is not reliable while taking prednisone because pred can linger in the system over 24 hrs. The endocrinologist said I could switch to hydrocortisone but only if the rheumatologist thought the PMR/CGA was in remission. After 15 mos. of bouncing around 4.5 to 4.0 mg. with stable blood tests (I made the increases based on how I felt), the rheumatologist agreed that I might no longer have "active disease" and the Endocrinologist switched me to hydrocortisone at 15mg. (the equivalent of almost 4 mg. of prednisone) to be taken in 2 doses. The switch was immediate and I felt better on hydrocortisone than I ever did on prednisone. She said since the hydrocortisone doesn't linger in the system that long, my adrenals would be challenged to wake up but I would not be in danger of an adrenal crisis. A month later I was to refrain from the afternoon dose and the following morning dose and receive a cortisol test and then a Synacthen test before 9:00 in the morning. This was the only kind of Synacthen testing situation they considered reliable in their department.
It turned out that the test showed my adrenal glands were quite capable of responding, and the endocrinologist said I could taper off the hydrocortisone. She suggested a 2 week taper, but I have been doing it more slowly (a month now). If all goes well, I will be off it in another week. Each time I make a taper, I have some symptoms that make me fear PMR might still be with me, but so far the symptoms diminish after about 3 days and I carry on.
So this is something more for you to consider. Hydrocortisone instead of Prednisone. I've been wondering why it isn't tried more often at least for folks with only PMR who have made it to low doses.
"Their rheumatology and endocrinology departments are both very adamant that a Synacthen test is not reliable while taking prednisone because pred can linger in the system over 24 hrs"
A doctor in the UK has developed an algorithm that shows whether the adrenals are responding. It isn't 100% accurate but it does differentiate between total non-response and some response. He however does not do it until a relatively low dose of pred. I think 5mg is felt to be the best point.
"The endocrinologist said I could switch to hydrocortisone but only if the rheumatologist thought the PMR/CGA was in remission"
Why? There is a lady on the forum whose PMR was managed successfully with hydrocortisone. I don't see that is a problem - and there is no way you can tell the PMR is in remission UNTIL the patient reaches zero pred with no relapse. Even 1mg may be enough to keep it at bay.
"I've been wondering why it isn't tried more often at least for folks with only PMR who have made it to low doses."
I mention it every so often and I think it is in the BSR guidelines - the trouble is, many doctors think they are above reading the guidelines because they "already know it all". And most of them aren't very good at endocrinology - even endos disagree on it!
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