have written this already so may appear twice!!! Has anyone had this test? And if so, were you advised against taking your pred beforehand? App is at 12.30 and I usually take pred with breakfast. Am on 3 mgs. Doesn’t say that on the hospital letter!?
Has anyone found it useful? Arranged by rheumy! Free!
Yes had the test on Friday, no steroids on that day before you go, they will ask you if you have taken any before the test. Nothing to worry about. Hope you get a good result!
Why didn’t it say so on the letter? Weird!!!!
It did on the one I got, which said exactly what the procedure would be too.
said nothing like that on the letter. I looked it up on Google or something to find out. So bad! Do post if poss to me? Am I allowed to put me email address on here?!? Never sure of rules!! But it’s on Tuesday!!!!
Use the chat facility -do not put your email on open forum …,
still don’t know quite how to do it!
Too late now -see reply below…
But you just go tap the name of the person you want to chat with -takes to their profile -then select Chat..
Thanjs ! You’d think I’d know by now!!!! Brain fog?!?!?
Sorry have destroyed it, I just keep actual appointment letters. Google NHS ACTH tests description on there.
Yes I did look up somewhere! I can’t believe they do things differently in different hospitals!!!! This is Barnet. I shall ring them tomorrow anyway.
Thanks.. at least I remember I will be there for an hour or so.. as my daughter will be picking me up!!
Oddly, I had a synacthen test done at Barnet in June. I don't remember whether there was anything in the letter about not taking my Pred before hand, but I was told by the rheumie not to, and I also read it on here, so I didn't take my Pred till after the test.
Apparently I passed the test! Well I'm still here to tell you about it, so I guess I must have passed. 
Test result came back as normal! So?????
Did they tell you the actual reading and was having the test ok?
No they just said normal!!! It was a bit more stressful than I expected .. but not actually a big deal!
Don't take your pred until they do the test as it may interfere with the results.
But that is actually poor timing, the synacthen test procedure usually stipulates that the basal cortisol blood sample at the start should be taken at 9am. Unless they have decided that the studies finding basal cortisol doesn't vary greatly between 9am and 1pm also applies in the synacthen test.
They stop pred and put you on the other less potent steroid that doesn’t affect the test
I'm not clear what you mean - by putting a patient in any steroid would affect the test if taken in the 24 hours before the test. However - for a synacthen test, they do not usually stop pred altogether, not taking it for the previous 24 hours is enough. As someone mentions, sometimes they ask for 48 hours but most don't bother.
Ok, basically I was an inpatient and they replaced my pred with Dexamethasone for 3 days or maybe hours (it was over ten years) and my synacthen test was positive for steroid induced Addison’s. That was my experience, I can try and dig out that years diary but I know for sure they stopped the pred for a (scary) while
Er - as I understand it, no wonder your synacthen test gave that result with low cortisol.
ucsfhealth.org/medical-test....
says
"Dexamethasone is a man-made (synthetic) steroid that bids to the same receptor as cortisol. Dexamethasone reduces ACTH release in normal people. Therefore, taking dexamethasone should reduce ACTH level and lead to a decreased cortisol level."
The dexamethasone test is different from the synacthen test we get.
You were ok, you had steroid, but I'm not sure they were looking for the same thing,
I was on 60 mgs? But I’m on steroids for life. If it was just one Specialist I’d freak out at that but my Endocrinologist is a fabulous doctor. And she’s after 2 other and the Rheumatologist team (who I think I’ll query with anyway). I know I have it anyway. I’ve had tons of problems, so I’m probably giving out wrong advice re steroids , so I’m gonna bow out X
All I can say is that if you were on 60mg pred, then OBVIOUSLY your cortisol production would have been non-existent so it seems a bit pointless doing the test - I can only assume it was for another reason. But very interesting nevertheless,
I've had 2 and each time the appointment has been 9pm.I took something to eat, then took the pred.
Hi. I have one coming up on 25th, 8:30. Have had them before (always at that time) and told not to take on morning of test but this one said not for 48 hours 😱. I queried it with the endo as I thought I might be in a state after that length of time and he said as I take it so early in the morning (2am ish) that the previous days dose would be ok to take. So roughly a 30 hour gap. It’s not a stressful procedure. I was given a cup of tea both times 😊
Definitely I as told not to take my pred for at least 24 hours before or at least, I normally take it in the morning so they said not to take any after my dose the previous day. My appointment was 11am so I took it afterwards.
As for usefulness, I am not sure. My rheumie concluded that I have Adrenal Insufficiency and was not convinced that my adrenal glands would ever work any better or enough to enable me to drop below my current 4mg. I didn't think that my results were that bad. He said he wanted to see a score of 450 after 30 minutes to prove an adequate reaction whereas mine was 360 after 30 minutes and 420 after 1 hour - at least not rock bottom. But he did think that he couldn't really do much more for me, apart from do some more bloods to check for inflammation etc. So as far as he is concerned I can remain on 4mg. But as I am in constant discomfort/pain, I am not convinced that I am out of the woods treatment wise, nor quite sure what to do next having run out of advice
I'd say that that result at 4mg was pretty good - SnazzyD had a much poorer result at 3mg I think and then a much improved one at 1,5mg. 4mg is still well able to blunt cortisol response. Imperial in London think 2mg is enough.
yes, I was not dismayed and am taking it with a pinch of salt. Main dilemma now is that I am wondering if 4mg is enough and that although I was OK on 4 a while back, maybe my 'bucket' is drip filling again as my neck and shoulders feel stiff and my legs. Though not convinced that my leg pain doesn't have a vascular origin as it travels up my leg (outside) but doesn't feel like a nerve or muscular pain. But as I am a patchwork of sensations at the moment (like many people here it seems) it is really hard to fathom out
Interesting that I never have flares as such! Just other symptoms of exhaustion, sweats, headache on top of my head throbbing feet etc etc but not really stiffness in shoulders etc like when I was diagnosed with pmr!
Pain on the outside of the leg is often greater trochanteric pain syndrome that is poking the sciatic nerve - it can be very vague and miss out components which is confusing. Mine is a sort of ache rather than nerve pain - I have never had typical sciatica, the awful pain is only ever in the sacroiliac joints and that is like a knife sticking in when I move in certain ways,
Hmm I am not sure. It could be but at the moment is most troublesome just below the right knee on the outside of my shin and seems to follow the line of the blood vessel. I have a cluster of broken veins there too. It feels more vascular than nerve, as you say, an ache and not related to movement. Visiting osteopath tomorrow though he is more focussed with my neck and shoulders after visit about three weeks ago which concentrated on my left sacro area and lower back. Lifelong back and neck issues though legs probs only since PMR appeared in 2020
I don’t think the GP can say what you future adrenal improvement will r owner be. You clearly have some activity. On 4mg my Synacthen test wasn’t particularly great but reducing slowly made it much better by 1.5mg. However, I think you have other fish to fry regards your pains. Sounds like the sciatic nerve is being upset by going’s on in the hip/buttock region.
Yes, I think so too. But it is all so inconsistent that it is hard to problem solve. Sometimes a pain/stiffness is possible caused by some activity. Often I don't even notice that I have been doing something. Other times I think 'Oh maybe it was that weeding'. Or something else - for example, last week I had a Covid jab so was it that? I am not so worried about the adrenal improvement as I think that will happen over time so long as I can avoid increasing the pred. But then I worry in case inflammation is building up. I think maybe I will just hold the meds steady and try to see how things are. I really don't think it is the sciatic nerve though. It more follows a vein path and I do have a bit of a varicose vein and some broken veins in that area. Also, I am trying to lose some weight by using intermittent fasting which seems to work (slowly) except then it is difficult to maintain whilst also taking medication - everything seems to contra-indicate something else! Frustrating
Agreed, do not take any steroids that morning. The procedure is straightforward and usually takes around an hour. Take a book! Very useful test if you are really struggling with fatigue.
I sent a reply to you but can’t see it! Don’t know what happens to my posts sometimes!!! Yes I suffer constantly from fatigue.. and more so if I try to reduce to 2.5x! So hope I’m alright tomirriw fir procedure without taking anything!
Hoping daughter can collect!!!!
How did it go?
Wrote a long reply. Did you get it?
will post again if you didn’t get it?! Don’t know what happens to my posts sonetime. Just disappear!
Happens if you leave the page [even if you don’t mean to] before you hit reply button… seems quite common on iPad or iPhone… on a pc or laptop if you try and leave page it usually reminds you haven’t replied….
No I didn’t hey ho x
It was much more stressful than I expected! But I always react strongly to anything ! Be it massage or osteopathy! Been on the sofa with a hot water bottle under my lower back .. adrenals? Feeling slightly sick.. he warned me I might but I wasn’t while I was there! Just very spaced out! Thanjs for asking. I appreciate it.
I'm sure after a good night's sleep things will settle. I think going back to my 1st one I did feel a bit strange but it passed thankfully. Take care.
Good nights sleep? What’s that? I have a fan trained on my hot throbbing feet!?!?! Wake up quite often. To pee anyway. Been in touch again with a dowser who found geopathic stress under/ in my house .. some years ago .. we will see what he comes up with. Different one actually .. as Rolf from Dulwich Health dies a couple of years ago.
Crikey!
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