Tried phoning doctors to ask for a basal cortisol blood test as I am now in 3mgs of prednisolone. Feeling very weary and exhausted by the end of the day. Doctor not available until 11th July…. Not even for a phone call????? How is this happening to our NHS? After a battle I was put on the acute list for phone call. Doctored phoned asked who was looking after me and asked who was tapering my steroids… I said only me. After much towing and frowning She said she needed my rheumatologist to advise about the test as he was the only one to interpret it????? The upshot was I told her don’t bother I’ll get it done privately and I hung up. Not sure where I’ll get one done but the worst part of all this is the state of our NHS. sorry for the rant but needed to get it off my chest.
Basal Cortisol test: Tried phoning doctors to ask... - PMRGCAuk
Basal Cortisol test
It’s so frustrating isn’t it? Having worked in the NHS for years, it has been underfunded for a long time, but people didn’t really notice. Then we get a crisis and GP’s are leaving and not being replaced in equal measure. Yes, there are a few practices where the patients are things you have to see in between golf games (I worked for one latterly) but it’s not the norm. No excuse for rubbish doctors who can easily look it up on Google or locally produced guidance if they are unsure. If they are not happy to interpret a Cortisol test then they need to refer you to an Endocrinologist not necessarily a Rheumy. My Rheumy held their hands up when it came to adrenal function. In case you can’t get one in a timely manner, it is worth thinking about what you’re doing in the day given you are likely to be cortisol deficient in some way. If you have a test it may well be low but that’s it, no action, you keep on reducing to trigger the adrenal axis into working. I had low cortisol all the way from 7mg and was very below par. I had a Synacthen test at 4mg and it was low but the Endo did nothing except say it was understandable but keep reducing. By 1.5mg it was much better and I certainly felt better. There was no intervention, I just had to do the hard yards waiting for the system to wake up. During this time I had to pare back my life hugely just to get through the day; i was a shadow. I got there by reducing by sneaking in 0.5mg drops over anything from 6-14 weeks. The lower I got the slower I went. It’s not a case that you get a test done, find it’s low and you’re given something that makes you feel better enough to get back to normal. The exception is if you are repeatedly getting symptoms of near adrenal crisis even after you have stopped rushing about and then they try you on a weaker steroid.
So the questions are, what do you do in the day and what exactly are your low adrenal symptoms through the day?
Thank you for your reply. I will have to really slow down. I get so very tired and feel very exhausted that I need to sit down and rest my body. After about 15 minutes I begin to feel a bit brighter. But I have now realised I can’t do what I did before and finding it hard to accept that after being very active I can’t do the things I want.
Amen to that. It feels unfair to be feeling worse near what seems to be the end, but there it is. My approach was to cut back now so I had the best opportunity to be off steroids with functioning adrenal glands at the end without prolonging medical input with more medication to stop adrenal crisis and then more tapering to see if I could cope without. I did a lot of sleeping, my mood was all over place and life was very boring but it was worth it. Read your body and most importantly realise you can have good days and bad days so don’t over do it on the good days until it’s reliable.
Thank you. Yes it’s unfair when getting near to what you hope is the end you feel so bad. But I’m sure now I’ve got the doctor problem out if my system I’ll be able to settle myself down and carry on looking after myself.
As I’ve said many times it took me as long to get from 10mg to zero as it did to get from 80mg to 10mg -all due to stuttering adrenals.Fortunately not as serious as you or SnazzyD but still frustrating.
Have a read of this. It states clearly symptoms you shouldn’t ignore. It speaks of Addison’s which has a different cause but the result is the same to varying degrees. What we have with Pred is secondary adrenal insufficiency but the result is the same lack of cortisol. I have on occasions had to pop an extra 1mg or 2 because of an unexpected stress episode that caused a crisis but I had got to know my body well by that point. If I hadn’t rallied in a couple of hours I would have sought help. If in doubt always seek emergency help if you present with signs of a crisis. mayoclinic.org/diseases-con...
Thank you. I’ve never carried pred with me but might now just incase.
For goodness sake - if a GP can't tell if a synacthen report is good or bad they really need some retraining!!!! Or even possibly just learn to read! A report comes with a context from the lab showing normal results and saying if the result conforms! Not asking them to go further - but that informs them if you need a referral to endocrinolgy ...
What you could do with first of all is a basal cortisol test - cortisol measured on a blood sample taken at anytime after 9am after not taking pred in the previous 24 hours. If it is above 450 it is normal, adrenal insufficiency is not a problem. If it is under 100 then you almost certainly have adrenal insufficiency. Inbetween it is equivocal and you would need a synacthen test to clarify - but at 3mg pred secondary insufficiency is to be expected but the cortisol level is a good indication of whether it is returning and how well it is doing.
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