Dear fellow members,
At present I am on 4.5mg of prednisolone.
I am wondering at what dose, do one need to be on before undergoing the synacthen blood test?
I could have missed out on the post (information) in this health forum.
Many Thanks best wishes.
My endocrinologist said he prefers 4mg and below because even 5mg can still suppress the adrenal axis in some. I know of others on here having one at 5 or even above but I don’t think the results set the world on fire. My result at 4mg was not special but they said keep reducing and try again at a lower dose. At 1.5mg it was good and I felt much better too. I’d say 3mg was the biggest turning point.
Hi Snazzy D,Many Thanks for your reply and information. Therefore it’s best I wait till I can reduce my dose to 3mg ( hopefully by end of April 2022 without any problems).Take care
Are you having problems? From what I’ve gleaned from others’ experiences here, they don’t tend to do it unless someone is having symptoms of adrenal insufficiency. If they are working you don’t get problems of they are not, you know about it!
I guess, at present, I am not encountering any problems . But nevertheless I am thinking that by doing the test, it will be evidence base to indicate my adrenal glands are functioning ok.
Not necessarily-only shows they are capable of working -not they actually are! If you aren’t having any issues would say they are functioning to some degree, but you won’t know for some time after you have finished Pred - and it can take up to a year to be 100% .
This post gives more info all things adrenals…
healthunlocked.com/pmrgcauk...
Hi DorsetLady,Many Thanks for the information/links.
Its great to have access to the wealth of information from this health forum group.I had no idea of what PMR was until I was diagnosed in September 2021.Since then I have been surfing the net to research on this topic too. I have the book by: Kate Gilbert PMR/GCA; a survival guide :it’s extremely useful.
At this present time , I am not in any rush to get the synacthen test but I am preparing myself with information/ knowledge when the time comes for me to do the test.
Many thanks again.
Have you read this as well -might give more info -
healthunlocked.com/pmrgcauk...
Much appreciated. Thanks
My experience is as DorsetLady says, that the test just tells you that they can work if stimulated but not that they will do so whenever they should. I could be fine for days but something extra like getting very cold while out or having along drive or being under the weather but having to do an errand would cause me to feel terrible half way through or soon after. I fell hard after a trip and felt trembly and nauseated for hours needing an extra mg and going to bed. I never go out without Pred, even though on a day to day basis I’m fine. The adrenals squirting out cortisol is only the end part of the story, the other links in the chain need to all be working reliably.
Its a great help to be able to discuss, to share information and real living experience with of people in this group forum, rather then reading from a text book or listening to the medic’s Many Thanks from bgchess🇲🇾
…and here you’ll get the patient’s experiences in all their glory - snd they don’t always correspond to text book version 😳
Do they ever? Though I suppose they don't come here much ...
Hello,do we actually need to have this test ? Thanks
Not necessarily. Some docs won’t even consider it unless you show symptoms of poor adrenal function which not everybody does at the end of Pred. That’s certainly the case for the Synacthen test which requires a hospital clinic visit and is much more expensive. A morning cortisol is easier, however you have to think about how useful it will be. For example, you feel mostly fine most days and your morning cortisol test is acceptable yet you have a crash if you over do it (not PMR or going above your general physical capabilities). Your random morning cortisol may have been ok but on that occasion your adrenal axis just couldn’t pull it out of the bag to cover the extra demand for cortisol. As I got better, the day after day issue of feeling empty was much better but an extra demand could trip me up. On 1.5mg this was the case for me, my morning cortisol and Synacthen test were pretty good. Try to walk up a mountainside with pain in my Achilles for 2 hours and I crashed spectacularly and needed 2mg and hours in bed. At least with poor adrenal function you can tell you have it but the test confirms your symptoms really are that. So that was a long winded way of saying it’s not always needed, not all docs will do it anyway and it doesn’t always give you the full picture but can be handy.
Should be added that the synacthen test really only shows that the adrenal glands are capable of producing cortisol in bulk if kicked in one particular way - if a boot comes at them from a different direction it might not work. The whole set up is very complex with loads of steps, any one of which may be wobbly.
Thank you. I was a bit unlucky last summer when I was admitted to hospital with a high temperature. They gave me 6 mgs of Prednisone and at the time I was on 3 I think. I had previously asked for a Synacthen test because sometimes I felt woolly etc. and felt I was short of cortisol. Anyway they did the test that day despite me saying it would not be helpful because of the increased dose.They said the result was fine and to stop taking any Prednisolone as I didn't need it. I ignored them as I felt my PMR was still active and didn't want to risk a flare. I was bit doubtful but after suffering a big flare a few weeks later I felt I had done the right thing and continued with DSNS.I am on 1 and 3 quarter mgs now.I wish I could have had a proper test though.
Do you actually have any symptoms of adrenal insufficiency?
Hi Dewdrop456,
Some information I found on the internet (NHS, King’s College, Uk). When taking prednisolone( artificial cortisol) for sometime, the adrenal gland stops producing the natural hormone cortisol. So may be with the synacthen test, it will show if adrenal glands are functioning. This is my thinking.
What is a short synacthen test? This test is done to assess the function of your adrenal glands. The adrenal glands are situated on top of both kidneys and are responsible for producing cortisol. Cortisol is a hormone which is essential for health and is particularly important in stressful situations. The adrenal glands produce cortisol in response to adrenocorticotrophic hormone (ACTH), a hormone produced by the pituitary gland. During this test you receive an injection of synthetic ACTH to stimulate cortisol release from your adrenal glands. We are then able to assess how much cortisol you are able to produce by taking blood samples. Why do I need this test? This test is necessary to find out if there is an adequate level of cortisol production in response to stimulation. Cortisol is a hormone produced by the adrenal glands and plays an important role in your body’s response to stress and illness. Cortisol is also involved in regulating your blood sugar, blood pressure and immune system. Greater amounts of cortisol are produced by your body in times of illness. If your body is unable to produce enough cortisol you may not be able to cope with illness and could become very unwell. What are the benefits? This test will allow us to find out if your adrenal glands are able to produce a sufficient amount of cortisol in response to ACTH. The results of this test allow the endocrine team to decide if you require treatment or if you are currently on treatment, whether this should continue.
Currently though, as far as I know they can’t easily test for earlier in the chain such as the ability of the brain to detect a low level of cortisol in the first place and then the ability for the hypothalamus to tell the pituitary to send out the ACTH and the pituitary to react accordingly. However, a Synacthen test is better than nothing because at least you know they can work given a functioning chain.
Thank you for your amazing reply. Very kind of you indeed.
Most welcome
It depends on the endocrinologist - they tend to have their pet dose which seems to be about 3mg. However, if you have an accommodating GP, they can do a basal cortisol: blood sample taken between 9am and 1pm, and the result of that tells half of patients whether they need to have a synacthen test. A result above 450 is normal, a result under 100 is definite adrenal insufficiency. Inbetween shows something is happening and depending on the dose of pred you are on at the time, you may need a synacthen test for clarity. But it is a good indicator and a repeat at a lower dose will show if the cortisol is going up - which is what you'd hope as the dose gets lower.
Hi PMRpro,
Many Thanks for your information.
I guess I am lucky to say that My GP is very accommodating. He is aware that I worked in the Health Services both in England and Ireland, therefore respects my knowledge and expertise. Many at times, he would agree to my request for treatment/ further investigations/ procedures.Correct me if i think the basal cortisol test is the same as serum cortisol test! I will be having my bloods done towards end of April 2022. Regarding Endocrinologist, I will discuss with my GP and seek his advice. But the main thing is my ability to continue lowering my prednisolone medication without any flare.
Thanks
pubmed.ncbi.nlm.nih.gov/286...
Basal cortisol just means the level in the morning which is when it should be at its highest - so will tell you if it is too low at present and, in the case of ?Cushings if it is very high. So yes - the test is serum cortisol.
Many Thanks
I have to have one when I get to 5mg at the moment on 6mg
Hope all works out well for you.
I recently had Synacthen test, my consultant wanted me to be at zero Pred for a few weeks before I had it as this would provide a more accurate reading.
It probably does - but how does he deal with the patients whose adrenal function is too poor to be safe if they are under any stress? Experienced endocrinologists are able to interpret the results when it is done at 3mg pred or lower. You can require 1 or 2mg to manage your PMR and stopping for a few weeks could set you back months by letting in a flare - but at that low a dose you do really need to know if you have any adrenal function.
My understanding is that the first thing to do is a 9am cortisol. If this is normal then a synacthen test is unnecessary
I haven’t read through the 32 responses so maybe it’s been covered. From what I had read by the Adrenal Insufficiency Coalition.
If you are not experiencing any non-disease related symptoms, then just get the serum cortisol blood test around 8 am in the morning. You don’t take your prednisone dose that morning until after the blood draw. Normal values is 5 to 25 mcg/dL. I waited until 2.5mg / day to have mine done.
The ACTH testing can be done when current prednisone dose is <5 mg/day, however (and I quote):
“Testing for HPA axis function is appropriate when patients are using <5 mg per day of prednisone or equivalent and there is difficulty reducing the dose further because of non-disease related symptoms. [Editor - in other words if our symptoms are of PMR or GCA this does not apply]. Next sentence was emphasized in Bold fond; In most patients who require testing, we recommend the low dose (1 mcg) ACTH stimulation test for evaluation.(3)
(3) Evaluation of the response to ACTH in adrenal insufficiency. Author: Lynnette K Nieman, MD. Published in Up To date. Current as of May 2016.
The above information was taken from Adrenal Insufficiency United: Glucocorticoid tapering and adrenal suppression testing guide.
Just so happens I had this and another document printed and ready for my Rheumy appt yesterday. Didn’t need either, he was in his super cooperative frame of mind. I can post the pdf if you wish. I haven’t needed the ACTH test (synacthen) so far. I’m on week 6 of DL’s Simple Taper @ 1.5mg/day hoping the mild pain I get only on long drives ceases so I can try my next taper to 1.25mg/d. My Rheumy is aware and is fully supporting my plan…go figure!😂
A basal cortisol (i.e. just a cortisol without synacthen test) can be done any time from 9am to 1pm without affecting the levels.
Synacthen Test
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