I've had one of these tests today and the nurse said I was very low at producing cortisol. That will explain my knackeredness for 2 months after each 0.5mg taper, (nearly stop technique) and I'm on 3.5mg at the moment.
As it will be a while before I see my rheumy I wondered what we're the implications?
Have a look at this - and just carry on with a very slow taper, small steps and hope your adrenals get the message….not a lot else you can do, except be aware if you get into a stressful situation they would react as well as they should..which is why the you should always carry a card or something to indicate you are long term steroids in case you aren’t in a position to help yourself or advise others.
healthunlocked.com/pmrgcauk...
Well that explains why I had to leave a music festival last year when I felt so stressed out. It was awful. I'll be more careful about stress in future.
The good news is that your Adrenals can and do work. Do you think she meant they were slow to work or that they were not producing enough cortisol yet? Obviously you will taper very slowly now. Maybe even cut your tablets into quarters and do well spaced careful drops and stop at the first sign of trouble. Good luck 🤞
Thanks for that reassurance. Knowing getting off Pred is achievable is a positive. It's just going to take longer than I thought. Feeling extremely ropey the day after the rest too. No energy.
What was the the result? I also had low results I think 289 at 30 mins and 340 at 60 mins where they were looking at wanting 450 after an hour. My rheumie said that showed that my adrenals were not capable of returning so I should stay on 4mg permanently. I said I think I can get lower. Anyway my 8am cortisol has improved but my PMR isn't letting me lower than 4mg at the moment
I have Endocrinologist ringing me in a couple of weeks. Cortisol test at sugery recently was 158, down to 4.5mg and feeling terrible, will try very slowly to lower for the rest of this year. Awful battle.
Thanks Longtimer Yes, I think we have to be very patient. I have just added a hip replacement and Covid to my 'mess' so I need to let that all settle down too as I had to increase my pred. I am currently on 5mg heading down from a few days at 10mg and a few days at 7.5mg but I can feel my body protesting so am taking it easy whilst I adjust, hopefully.
..Yes. patience!....I think back to the days when I went on 15 mg, walked all round Whitlingham!....OH said I was like a car with a new engine.....now just have a coffee there and look out to the water, but that's on a warm day! Fingers crossed!
I think the nurse said it was 180 at 30 minutes. I'll have to wait until I hear from the medics before I do anything.
"My rheumie said that showed that my adrenals were not capable of returning so I should stay on 4mg permanently"
Wrong. 4mg is loads to suppress production of cortisol and blunt the response. In fact, for 4mg that was a really promising result: the adrenals are producing some cortisol and can produce a bit more when kicked.
Yes I think so too. I was not daunted as I don't really feel the classic symptoms of adrenal fatigue. I do feel rubbish quite often but that is mostly random muscular pains in my legs rather than fatigue. My inflammation markers are normal but I do think the PMR is still active at 4mg. Tried going to 3.5mg but ended up back at 4.5mg. a few weeks of disruption (fall, op and COVID) means I need to start rebuilding once I have stabilised. I must admit though I was surprised that my adrenals were written off so easily
He hopes the patient will believe him and stop bothering him!!
We all react differently to medication etc......I now have Fibromyalgia, it's a struggle most days not knowing if it's that or lowering pred!
That sound a horrid thing to have. At least I'm pain free. I'm just staying in bed at the moment. I'm floored by the test I think.🥴
At the dose you are at your cortisol level is quite likely to be low and the response to the synacthen test blunted. At present it is a photo-shot and it is impossible to predict what will happen as the pred dose gets lower VERY slowly.
Synacthen test 
synacthen test
Synacthen test results
synacthen test
