First of all I do apologise for the repetitive nature of this post as I can see that someone else has posted on a similar issue.
I have been informed today that my cortisol level reading is 156 with the rheumatology nurse describing it as borderline. First of all I haven't a clue what a healthy reading should be,secondly what does borderline mean ? I had the test yesterday morning at 8:15 with no pred' before it.
My consultant is away until late June and for some reason it's proving difficult to have my questions answered by the senior nurse. I asked if it would be o.k. to drop from my present 5mg to 4.5mg and she said yes,I also mentioned that I am suffering with extreme fatigue,(serious to the point that walking out to my garage leaves me breathless,) was this connected to the low level steroid dose/lack of adrenal function ? Not sure was the answer. Does the cortisol level suggest I may need pred' on a permanent basis ? possibly was the answer. If that is the case why am I taking a DMARD,( Tacrolimus,) Not sure. Finally I asked how would I recognise the effects of Adrenal issues if I continue to reduce,fatigue,dizzy spells,headache was the response.
Can anyone help by giving me some idea of what the 156 reading means and am I likely to see the Adrenals kick in again. Could this debilitating fatigue be connected ?
Once again thank you to anyone who can assist.
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yorkieme
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If that is a basal cortisol test (the cortisol level in the morning about 8-9am) then normal would be over 450 and signifies you are not adrenally deficient. If it had been under 100 that would be taken as confirming adrenal deficiency. between 100 and 450 is equivocal and in order to decide if you have adrenal deficiency they would need to do a synacthen test to confirm it or how severe it is. However - if you are still at 5mg pred, you are likely to get a low cortisol level in the test because 5mg pred is enough to suppress the production of cortisol.
Because of this fact most endocrinologists don't test until below 5mg pred, many of them not until 3mg, by which time there should be less suppression of adrenal function and they should be starting to produce cortisol to top up the amount of pred to the sort of level the body requires for good function, The lower the dose of pred, the better the cortisol level should be,
Your fatigue is almost certainly because your adrenal function is lagging behind your reduction in pred dose.
That result does not suggest you will need pred on a permanent basis, I think both Snazzy and SheffieldJane had very low levels at 5mg which improved by 3mg and were even better at lower doses.
The purpose of the DMARD is in the hope you will manage to get to even lower doses of pred - it may or may not help. Only being at even lower doses of pred will result in an improved cortisol level.
If at any point you feel really unwell, showing any of these symptoms below, call 999 immediately and ask them for help, telling them you are a long term steroid patient and you are reducing your dose to low levels. I would write a note about your pred history and these symptoms and pin it somewhere obvious and also inform family just in case you are too unwell to call 999 yourself.
Symptoms and signs of adrenal crisis can include any of the following:
Thank you,your response and the one from SnazzyD has provided me with a better understanding and moved me from what was looking like a downward spiral to a much more positive one.It's difficult to express gratitude with a simple thank you but the sincerity is there yet again.
It’s borderline because it’s above 100 but below 350. Have a look at page 5 here as it spells it out quite nicely. nnuh.nhs.uk/publication/dow...
As PMRPro says, SJ and I had substandard responses at 5mg. My first test was at 4mg and it was lower than yours but above 100. This was when I was in for my Synacthen test. Luckily my GP had the foresight to book me in months before I got to this point in anticipation. I’d say certainly don’t give up hope at this stage. My tests weren’t exciting until I was tested at 1.5mg. My symptoms certainly reflected that. From that 4mg to 1.5mg I felt pretty much like a shadow of my normal self then good days outnumbered bad as long as I didn’t push it.
Your steroid sparing meds have nothing to do with the adrenal function aspect of reducing. Sometimes docs need reminding of this and really with a borderline result it might make it worth asking for a referral to an Endocrinologist because it seems from my experience and comments of people here that Rheumatologists’ knowledge of the ins and outs of adrenal function is hit and miss.
The other tricky road to navigate is when to put up with how ill you feel and when to call for help. I can’t answer that. My approach for me was if I felt something was deeply wrong plus the symptoms I’d take 2mg and lie down. I didn’t do this just because I needed a bit extra to get to the supermarket. However, you should discuss this with your doctor if possible.
I’m only going to address your question of regarding possibly having to stay on Pred on a permanent basis due to possible Adrenal insufficiency (AI), and if I recall my previous readings correctly (there is plenty of info available if you search the internet) I believe the answer is most likely not. I think if the PMR is under control or in remission a different steroid can be given (Hydrocortisone?) that will not have a negative affect on the Adrenal glands but will address low cortisol levels and I believe it can be given with Pred.
This article may address this further, I didn’t read it in its entirety (this time) but it will get you started and also provides a source for looking for more information to gain a better understanding.
As to the Basal Cortisol test I didn’t get it until I was at 2 mg Pred (or close, I posted it at the time, by then I was doing 0.25 mg steps).
As far as hydrocortisone is concerned - like pred, it depends on the dose. Too high a dose of HC will also suppress production of the natural cortisol - especially if given together with pred. The total dose must be below the physiological dose which is now accepted as more like 5mg or less of pred. If you are on a low enough dose of pred, then adrenal function will generally return sooner or later. The advantage of HC is that it is out of the body much more quickly and when used on its own can be dosed 2 or 3x daily to mimic the normal production of cortisol.
Thank you for your response,any and all information is a real help but I took particular note of your last paragraph as the extreme fatigue is a real issue at the moment. Thanks to your comment and the others I feel more confident that the cortisol reading is more of a start to yet one more journey on the PMR road.
This is a fascinating thread and I wish you good luck on your continuing journey. I hope you are using a really slow taper method. In my year long effort to get to zero from 2 mg I actually did each step of the dead slow nearly stop method twice over. That is to say, start at 2 mg, take 1.5 after six days, repeat. Same with the five day step, do it twice, and so on. After three months, at 1.5 and start the taper to 1, same thing. Three months to complete each step, all the way to when the new dose was zero, three months tapering from .5 mg to 0! I did get to zero (mid 2020), but, and I checked my diary a few days ago, after six weeks the PMR symptoms had grown intolerable and I went back on pred, although was good at a low dose , 2.5 for several months. In retrospect I think the very best thing that came out of this wasn't so much the unsuccessful flirtation with zero pred, as it gave my adrenal glands time to get working again. Possibly such a slow method would give your adrenals a chance to pick up their pace without causing you more suffering than you are already enduring. (I've since had a serious flare, and am still on 3 mg, with occasional nudges at 2.5, but my morning cortisol test a few months ago, 59 hours after pred dose of 5 mg, apparently was exactly at the middle point of the healthy range. I asked for the number but was not given it.)
Thanks very much for your informative response,I really do appreciate each one.During the last couple of days I have given a great deal of thought to my response regarding the borderline cortisol reading and sad to say I think one of my old issues seems to have raised it's head ........ if it ever went away at all. It's called impatience. I was so desperate to receive a positive result so that I could get off Prednisolone much faster that I forgot this nasty disease makes the decisions not me.
How appropriate then that your post puts the focus on the issue of tapering so thank you.
Thank you for your response,as I have said to other contributors I am extremely grateful for each and every one.I have spent almost three years learning many things about PMR but it now looks as though the next lesson has started and your comments help.
When I had adrrenal problems a few years ago I was told that the reading in itself doesn't mean very much, it's more important to know if the level is changing, ideally from after you have had a synacthen test as PMRPro mentions. For example if the synacthen test shows that your adrenals didn't respond to stimulus, and then a later cortisol test shows 150, that is perhaps a good sign that they are working a bit better. I say perhaps as I was told by my rheumatologist that it is 'very complicated' and really the job of an endocrinologist to advise, if you can get referred to one
Endocrinology is the equivalent of 'rocket science' I'm told which is why presumably there aren't many endos and even rheumatologists are in awe of them. Plus in our NHS system specialists mainly work in their own speciality silos, although there are some multi-disciplinary teams (MDTs) for complex cases
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Cortisol Levels Update
Off Pred - cortisol level high - feeling awful 
1.43 L cortisol level found 3pm
Suboptimal Cortisol levels following Synacthen test 
