Cortisol

[Robinsnest72]

I have been off pred now for a month. Had a pile of blood work done yesterday. My cortisol level is 210 so I am guessing my glands are working. Anything below 170 it says is dangerous. As Time goes on and I am not so tired will the levels increase?

[SnazzyD]

Well, they are doing something but this doesn’t show they’ve recovered fully yet and hopefully they will slowly get better . Mine took best part of a year to give me reliable function and even then there were odd times they forgot. Assuming this was a blood test taken between 8 and 10am (when your levels should be peaking) and it is in mol/litre units, there is room for improvement and I wouldn’t crack out the champagne yet. Mine was 210nmol/l I think, at 4mg but then 389nmol/l when I was on 1mg. I found this handy little guide (below) for GP’s diagnosing Addisons and how to watch for an impending crisis as it can creep up. It’s packed with information, a little to much perhaps. It says that a cortisol reading of 100-400nmol/l is justification for a Synacthen test. The test is handy because it shows if your adrenals will work if they are shouted at with a substance mimicking the pituitary gland’s signals. If that is good, you’ve got half the battle won. The rest is up to the other parts of the chain starting in the brain to react appropriately eg, a stressful day dealing with a water leak to signal to the adrenal glands to make cortisol pronto. When your adrenals can cope with sudden demands and illness reliably, you’re in the clear. The tricky thing with this bit of the recovery is that you can be feeling quite smug because you feel ok then suddenly for whatever reason you have no stuffing left in you. gpone.wales.nhs.uk/sitesplu...

[Robinsnest72 in reply to SnazzyD]

Thanks for your reply. I do not know if she would even consider a Synacthen test. I will hope as time goes on that things will improve. I am under a lot of stress daily so that is not going away. I was just happy to see they are working and not in a danger zone

[SnazzyD in reply to Robinsnest72]

do you know why not? Mine was booked as a matter of course way ahead of me getting to 4mg by the GP. It’s one thing to have them working a bit but it’s whether they will rise to a challenge. If not, make yourself aware of the symptoms of insufficiency of adrenal function and get on it if you see a trend starting and always carry Pred with you if you are out of the house.

[Robinsnest72 in reply to SnazzyD]

I can ask her for it but she is no more interested in looking after me than flying to the moon.I don’t even think she listens to what I am saying. Just tells me to go see the nurse for a tetanus booster. I have not seen her for over a year. With Covid she just phones. Same with Rhemy and he has dismissed me from his care now. I will see if she calls me now the blood work has come back. I just read what I could off the lab report that is sent to me. Learn more off of this site than anywhere. Thanks for the info and stay safe.

[SnazzyD in reply to Robinsnest72]

Are there other docs in this practice?

[Robinsnest72 in reply to SnazzyD]

This is just my gp I am speaking of. Where I live it is impossible to change doctors. A lot of people do not have a regular doc and they just go to outpatients. We say once you reach the age of 70 they could not care less. My daughter has a specialist for her Parkinson’s in Toronto and there is so much Covid that we would not go and I cannot even get a phone call from there. No one to answer questions. Times are not good right now.

[SnazzyD in reply to Robinsnest72]

You are clearly in a difficult situation. I guess for now, you just have to be vigilant for symptoms of adrenal insufficiency just in case and be ready to take some Pred if your body becomes overwhelmed with all this stress and your adrenals decide they can’t quite cope. It might not happen of course, but being aware is half the battle.

[SheffieldJane in reply to Robinsnest72]

I wonder if you can book a test privately. It is pretty important. One of my GPs was shocked when I asked for one. He said” Oh I don’t think you’ve got Addisons”. Fortunately he was bright enough to listen to me and yes my Adrenals were underperforming and I had to see an Endocrinologist. They did perk up during subsequent tests but that’s not the point. I still have an emergency syringe of Hydrocortisone.

[PMRpro Ambassador in reply to SheffieldJane]

Was he really unaware of the risk of secondary Addisons? I despair!

[PMRnewbie2017 in reply to SnazzyD]

Thanks for the link. Very helpful. and since it has been produced for GP's perhaps they will accept it!!

[PMRpro Ambassador]

It is felt it takes up to a year for the adrenal function to settle down and work reliably in reponding to demands put on it. As Snazzy says - I would like to see a synacthen test as well to see if you can achieve anything better than that if it were required because it is borderline. If that level of function hasn't returned, then having an emergency hydrocortisone pack at home might be worth asking about.

[tangocharlie in reply to PMRpro]

I was given an emergency injection kit and some hydrocortisone tablets just in case.