I am seeking the wisdom and knowledge of this group to help me understand low cortisol. My blood tests came back as lower than 50 in an afternoon test.
Is it typical for people with GCA/PMR to have low... - PMRGCAuk
Is it typical for people with GCA/PMR to have low cortisol well still taking 5mg of Prednisone?
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Glennda
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DorsetLadyPMRGCAuk volunteer
Hi,
Would suggest that your own adrenal glands are not functioning as normal yet. Usually they produce about the equivalent of 7.5mg of Pred or thereabouts. So when you are above that level, they “switch off” because they don’t need to work, when you get below that level, they need to start working again. Some are quicker than others!
Did you have the test because you were fatigued or felt unwell?
Have a look at this -
healthunlocked.com/pmrgcauk...
Yes. I was pushing myself to do anything.
At what dose of pred?
5mg
Your body is lagging behind in topping up the dose - and fatigue is a main symptom of that.
It was not an afternoon test you needed - it is a synacthen or ACTH stimulation test. It is done in the morning, usually at 9am, after not having taken pred for 24 hours - you take the morning dose the day before, you do not take your morning dose before the test but take it with you to take once it is finished.
In a short synacthen test a blood sample is taken at 9am to establish the baseline level of cortisol. Then an injection given to stimulate the adrenal glands to produce cortisol. Half an hour later another blood sample is taken and the cortisol level measured. If the adrenal glands are capable of producing cortisol the injection will stimulate them to do so. Sometimes the test is extended with another 2 or 3 samples being taken.
If you are on 5mg of pred the cortisol level in the afternoon will be low - because the pred suppresses the production. The test I have described doesn't tell you if your body IS producing cortisol as normal - just whether it can or not. Then you try to reduce the pred dose further - but very slowly - and as you reduce your body SHOULD start to produce cortisol again. But it is more complex than whether you can or can't make cortisol - it is a very complex feedback system where a lot of different factors have to work together. In order to know more than that you would need to see an endocrinologist who could determine whether other factors are causing the poor production of cortisol.
Do these tests have to be done privately? I asked my G.P when I should have another CRP and ESR and she said it wasn't necessary because (as the Rheumatologist told her in his letter) there is no link between my blood tests and my symptoms. Apparently my CRP was the highest and the ESR was almost normal on my first blood test. I was diagnosed in April this year. Am currently on 3mg/2mg prednisolone alternate days. From being in typical PMR pain, I am now relatively comfortable - some stiffness in the neck and little niggling pains here and there, mainly shoulders, but all bearable, and if needs be I top up with paracetemol. Before I was diagnosed by the Rheumatologist I asked my GP if I could have a blood test to find out how much cortisol I was producing. Her reply was no, and she became a bit tetchy. Normally she is a very good GP and has been very good to me in the past, but I think maybe she knows little about PMR. I should be grateful for any information on relevant blood tests.
Despite the fact my ESR/CRP had never been raised in the past and I would have said no point - I'm not sure I agree entirely. My new rheumy has found mine ARE now slightly raised when I have problems. Mind you - I don't take that much notice - symptoms rule for me! It is always symptoms that are important as both ESR and CRP can be raised due to a range of other causes and may remain at normal levels even when you are having a flare. They are a guide and only a guide - they should never be the bottom line.
Your cortisol has nothing to do with the PMR and if you are doing fine on 2/3mg pred then you probably don't need a synacthen test done. If you had had increasing fatigue as you reduced below 5mg then probably it would have been worth it. Mind you, there is one lady on the forum who had got to 2mg and felt fine but was sent for a synacthen test - and it turned out her adrenal function is very poor.You can never tell.
But no - your GP should be able to arrange one. Unless they are scared it is coming out of their budget in which case they may refuse.
Thank you for your reply PMR Pro. It is strange, because from barely able to walk up the stairs, sit on the toilet, turn over in bed, I am feeling almost 'normal' again, especially late afternoon and evening when I am totally pain-free, less tired, feel like going for a long walk, but of course then it is time for bed. Why does this not happen in the morning? I take my pred 6/7am. I have to say though, the higher dose pred did make me feel ill. Since being on this low dose I have felt so much better and lots more energy, playing golf again (in a buggy) and have started to play bridge again. Maybe meeting up with my friends has made me feel better, or and I say a big OR, do I not have PMR and have I been wrongly diagnosed? Reading everyone's stories on here I am beginning to think I have been wrongly diagnosed.
Why do you think you were wrongly diagnosed? That is all very typical of PMR and if a low dose of pred makes the difference - does it matter what the label is?
If I were you I really would try taking the pred before bed and see if it helps. I was on methylprednisolone (Medrol) for some months - it is the default corticosteroid here where I live. It didn't ever work well for me but by taking it before bed I got more of the day pain-free. There must have been something about how I absorbed it (or not) because before I had been fine on enteric coated prednisolone in the UK - until I had a new batch which just didn't work and I had an awful flare. Then I was switched from the methylpred to a form of prednisone - and went from 20mg Medrol and struggling to 15mg and fine overnight. Different people experience the various steroids differently - a bit of experiementation can achieve wonders.
I think I will try taking my pred this evening, although I will still have the morning's dose in my system. I did try taking at 2am a few weeks ago. but didn't seem to work. Will have another go, because I need to be active in the morning. At the moment it takes my body and my brain 2 hours to 'wake up'. Your knowledge is invaluable PMRpro. How lucky we are to have people like you who are willing to answer even the most mundane questions. Thank you so much. Will let you know what happens.
Did I just read that you were diagnosed in April of 2018 and are taking alternating 2/3 mg now, less than four months later? How do you feel, painwise?
I hardly dare say it, but I feel good, almost myself. Pain is minimal. It is now 10.50pm and I feel full of energy, even though I went out in the heat today and did some gardening, 'cutting back and tying back, deadheading, that sort of thing. It was hot and my hair was wet with perspiration, I did begin to lag, so I went indoors and sat down for a while - a long glass of lemon&ginger, then made supper about 6pm. Cleared up, and I began to feel utterly bored because I was brimming with energy and the day was over. Seems to follow the same pattern every day for the past 3 weeks. I used to do a lot of long walking (5 or 6 miles or so) before this PMR struck me down. I do try to walk roughly a mile every other day.. I need to do this to expand my lung capacity after having had a lobectomy and 2 pneumothorax last year. I sound as if I am 'showing off', but I assure you I'm not. I'm just so pleased I feel well enough to resume my activities. My fear is it may not last, then I shall go into a deep depression.
Brilliant, I'm so pleased for you.
I had this test done 2 weeks ago, awaiting results. I had mine in the afternoon, having not taken prednisolone from the morning of the previous day. The endocrinology team were great, made me a cuppa tea between injection and second blood test. Let's see what unfolds!!
If your normal everyday adrenal test is ok - not the specialised Synachten test - the one where they test the thyroid etc., how do you convince your GP to send you for a special Synachten Adrenal test?? Is it possible to have normal hormone tests and yet for the adrenal issues not to show up? Hope this makes sense!
PMRproAmbassador
Yes - because the pred is accepted by your body as being part of the amount of corticosteroid it needs to function. As a result the adrenal glands only produce a smaller amount than they would if you weren't on pred - enough to top the dose you are on to the amount it needs.
Don't understand why you had an afternoon test?
I was at the rheumy in the afternoon. The test showed that I wad very low for that time of day.
Diagnosed 12/2016. Taking delayed Release Pred at night. Down to 5mg 2 months now.
Very interesting discussion. That time of day has been a problem for me from about 9mgs down. There have been different symptoms at different dosages. Wobbly, weak, irritability and distress intolerance, now mosly just tired --- and some days nothing. just tired.
At Kaiser they almost never test for cortisol levels. I've asked. My rheumy says she just goes by symptoms.
I didn't think our cortisol production, pre-pred, had anything to do with PMR?
That is a really point. Bearing in mind how quickly most of us respond to a large dose of cortisol when we start taking Pred, it seems logical that cortisol production pre PMR/GCA must have been low. Poor adrenal function can also affect heart rhythm...I was diagnosed with an arrhythmia a few months before my GCA was diagnosed. I feel in my case the two are connected. I am yet to find a doctor or consultant who wants to discuss this with me!!
• in reply toJudy211
Hi Judy
I’m sure l read somewhere that there was a question being raised - did we develop ‘PMR’ Symptoms because we already had low Cortisol Levels? So that’s why we respond well when we take the Pred & therefore we run into difficulties when reducing. Interesting?
I can’t remember when or where I read it or if l dreamt it? But it’s a though!
PMRPro over to you!........
Mrs N
AKA Warrior Princess 👸🏻
When you find one - tell him there are probably more of us with related arrythmias and to be fair - the arrythmia specialist here said my a/f is almost certainly caused by the autoimmune part of the PMR having damaged the sinus node as the two things started round about the same time.
My rheumy looked at me 3 months ago as if I was crackers when I told him that at 7mg pred my atrial fibrillation is too bad to put up with. At 8mg it is occasional and doesn't last too long. At 9mg - not a sausage! Before I saw him this week I had the chance to speak briefly to one of heart group in the hospital - and she didn't find it at all surprising and was delighted it worked. Interestingly, when I told the rheumy that he stopped worrying about the pred dose - if I take less pred I'm going to need more other medication.
Exactly the same here, no arrhythmia at higher doses and only became a real problem again at 6/7mg. So lower doses of Pred and the adrenals not producing much cortisol yet either...resulting in too low cortisol in the blood and having a knock on effect on the thyroid glands? The endocrine glands work together after all and it is well known thyroid function affects the heart. I’m pretty sure there must be a simple answer to all of this :)!
I too worry about the lower end of the taper. I am down to 8 mg now - and I know that this cortisol barrier lies ahead. My worry is that presumably there was something wrong with my cortisol production in the first place, in order for me to contract GCA. So will it be there for me as I taper lower? - and how will I know for sure if It isn't? I have already lost one eye, so I feel more than a bit twitchy about this. My Doc doesn't seem to worry though. I don't think this is an encouraging sign, since he hasn't seemed that interested all the way through this.
No - it really is unlikely to be purely low adrenal function that causes the autoimmune disorder that underlies GCA. They have found low adrenal function in a few PMR patients - but no proof it is the cause. If it were it would be easy to deal with.
The majority of people are able to reduce their pred dose and get off altogether providing they go slowly enough. You just keep reducing slowly and providing you don't find you are developing increasing and overwhelming fatigue as you reduce there is likely to be no problem. There are a few people on the forums who have proven adrenal insufficiency, a couple with adrenal failure, but that is out of thousands of patients on pred.
As far a sight loss is concerned - you would have to have a flare of the GCA. Nothing to do with cortisol production.
My Goodness PMRpro ! - You are always there for us! Thank you so much for that. But what else could cause a flare of GCA - other than a lack of cortisol production?
You probably think I'm over sensitive - It's because I am just now.
No answer to that I'm afraid since no-one has any idea what it is that sets the immune system off to go haywire and attack our bodies in error. However, anything that affects the immune system could do it - an infection, trauma, stress of any sort, emotional or physical, environmental influences - I'm sure there is more! It is the same with any autoimmune disorder. Everyone is slightly different but the one thing that has been clear over the years is that stress of any sort can trigger a flare in some people.
But the actual disease process is still active - the pred doesn't have any effect on that, it just mops up the puddle of inflammation due to the overflowing bucket. Taking a high enough dose of pred will keep the level of inflammation below the rim of the bucket and stop an overflow - so if you take too little pred the dripping tap of inflammation will fill the bucket up eventually and there you are - a flare. Or the activity of the disease may increase for some reason - that is the case for most autoimmune disorders - and suddenly the dose of pred that was enough isn't any more.
But it is very unlikely it is cortisol that is involved - absolutely certainly not on its own. It is a combination of factors that mount up and become too much - the straw that broke the proverbial camel's back.
Hmmm. This is all very interesting but let us not forget that PMR is an illness characterized by overproduction of Interleukin 6.
Does that come down with treatment? I got to look at my labs. I know I’ve had the test but I never knew why. I think I know everything I need to know snd then I see something I never really looked into.
I'll respond to your questions about interleukin 6 in a separate post, another time.
My adrenals didn't restart after going from 5 to 4 mg Pred very slowly, I had to see an endocrinologist. It got sorted over the course of a few months and switching to hydrocortisone. Trouble is, you can't do the synacthen test until you're on 5 or lower.
Were you able to tolerate hydrocortisone? At 2mg Pred. last May, 2017, my Neuro, who had treated me for GCA, for 12 years, handed me over to my GP. He also ordered a synacthen test. I felt fine at 2mg Pred with NO FATIGUE. The results, showing Addison's Disease sent me into overdrive! I took Hydro, against my wishes, for 3 months, and when I started' losing the plot, I refused to continue with it. The Endo put me back on Pred 4mg. I am currently on 7mg.
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