Interesting paper on controlling Adrenal deficiency.

[Exflex]

Interesting but complex paper on new methods to deliver dosage with a closer fit to the circadian cycle. Note in healthy individuals the amount of cortisol peaks at 02:00 to 03:00 hrs.

ncbi.nlm.nih.gov/pmc/articl...

[PMRpro Ambassador]

I have never seen anything that claims cortisol peaks at 2-3am - it has always been taught that it peaks about 1/2 hour after you wake from a good night's sleep as it is to prepare the body to get going for the day. And that is what it says in the paper:

" In 33 normal individuals who had 20-minute cortisol profiling over 24 h we have shown that cortisol levels reach lowest levels at around midnight, levels start to rise at around 02:00 to 03:00 and reach a peak at around 08:30. Cortisol levels then slowly decrease back to the nadir to complete the cycle over 24 h."

[Longtimer in reply to PMRpro]

Interesting...but a tad scary....about immortality....

I do wonder what a reading has to be to not be adrenal suppressed....if mine was 92, now 166, when is it an ok reading?......

[PMRpro Ambassador in reply to Longtimer]

A basal cortisol level below 100 (that is taken about 9am or soon after) is almost definitely adrenal insufficiency. Below 275 makes it possible, the lower it is, the more likely. Normal values for a blood sample taken at 8 in the morning are 5 to 25 mcg/dL or 140 to 690 nmol/L.

You can have a normal range cortisol but still have adrenal insufficiency - in that the adrenals can't produce more cortisol in response to an emergency demand.

So you are getting there - patience!

[Longtimer in reply to PMRpro]

Thanks for that.....I have waited this long, so yes getting there and being patient.......

[Avadip12 in reply to PMRpro]

Off to the endocrinologist tomorrow to discuss my adrenal function. I don’t want to say insufficiency, because at the moment all my test are negative , BP , U&E , CRP , ESR are all normal and Relatively pain free on 5 mgs . The only thing that is not normal and has remained a constant ruination to my daily life is my overwhelming morning fatigue. Someone’s I feel as if I can’t listen or talk effectively .In these regular spells my legs are weak and shaky and my body and brain tells me to lay down. After many many years of this , I need some answers, but truthfully I don’t think there is any . From reading the article of circadian rhythm’s, this complex system doesn’t read as being easily manipulated to individual needs. I do understand that I am not having and real insufficiency as in addisons, but I am thinking that after 15 yrs of pred it is possible there may be a function error ? In my adrenal system. What test would be reasonable for me to request ,

[PMRpro Ambassador in reply to Avadip12]

I agree - but other than a synacthen test I'm not sure there is that much to ask for. Some endocrinologists won't do them until the patient is down to 5mg, others insist on it being lower, 3mg for example. I assume you are taking the pred in the morning? Have you tried taking it earlier to see if that would take the place of normal cortisol secretion? If you aren't producing your own cortisol overnight that could well account for no get up and go in the morning - until after you have taken the pred and it is in your system.

[Avadip12 in reply to PMRpro]

Thank for reply, yes I have yo-yoed between 2.5 and back to five for past 8 yrs . But in this vicious circle of dreadful fatigue non functioning on 2.5 to feeling better upping it to 5 mg s , but then feeling the fatigue again after a month and being told to start reducing again. Over the past yrs I have tried taking pred at 2 am , this just led to broken sleep illness. Staying up later and getting up 7 am going for a walk to stimulate my metabolism. Tried Sad Lamp , low carb diet , which made me feel faint. I will ask if he feels the synacthen would be helpful, if he doesn’t suggest anything. Until now my Gp and rheumatologist ( had 5 different over past 15 yrs) they have totally ignored my pleads about my terrible fatigued, slow cognitive and leg weakness in the mornings. So sorry going on , just feeling cheesed off and tempted to go on to 10 mgs to improve how I am feeling.day after day , week after week , year after year. Yes I know that’s no good but I have done this in the past to have a holiday awake and take part . Thanks again for listening

[PMRpro Ambassador in reply to Avadip12]

I don't blame you - your doctors haven't helped yuo though, the worst thing to do to a patient is to get them into a yoyo pattern with pred because every time it gets harder. If a patient can't reduce the dose like that there is a reason behind it - it could be PMR still but you appear to be in a situation where your adrenal function is shot - you have all the hallmarks.

Where in the UK are you? Is a private consultation an option - even if it is just a singleone?

[Viv54 in reply to Avadip12]

I really understand how you feel.i pulled my self around for weeks after my taper from 20 to 5/6 ! waited for something good to happen, but just became weaker and the fatique was the worst ! I only had to sit in a chair and fell asleep. Anyway , at the time i could not get a GP app or speak to the Rhuemy. So i upped my pred to 10. The relief was instant ! I have a lot of other spinal problems/ OA/ RA. But was able to cope far better as my fatique was under control. I told myself i would do it for a month, that was 3 months ago ! I know i can not carry on like this, and have told the DR that i will start my tapering plan again after Christmas. I really felt i was just being pushed from one DR to another and decided to take control.I am now going to taper my own way , using the plans from here ...and boy do i feel better for it. After all we all know own body and should not be shoved in a medical box ! Best wishes Viv 🌷

[Avadip12 in reply to Viv54]

Thank you for your reply, yes I identify with all you are saying . I do hope you achieve your reduction. Going from 7 mgs down was my worst area. And I often popped it back to 10 so I could take part in an event or enjoy my holiday. Good luck .

[Longtimer in reply to Avadip12]

Has your G P ever suggested the cortisol test done without steroid s before 9am?.....it may show why the deathly fatigue....which I can certainly relate to!I fully expect the I may have to get to 5 mg and stay there just to be able to function.....but at 7 mg at present and struggling to lower.....it could be where you need to be, at least at present....

We live in hope...🙏

[Avadip12 in reply to Longtimer]

Thank you for your reply, I am Lucy that I am seeing an endocrinologist tomorrow, I was referred as my GP was unable to answer my question regarding adrenal function. I have health insurance so got an appointment within a week .

[Longtimer in reply to Avadip12]

That's good, stress how bad you feel, hope you get some action!.....keep us posted.....

[Exflex in reply to PMRpro]

You’re right - as usual 😊 - I was going from memory; I read the paper and studied the graph days earlier, doh.

[Amkoffee in reply to PMRpro]

This would explain why they do a stim test at 8:30am.

[PMRpro Ambassador in reply to Amkoffee]

Exactly.

[mloyuken in reply to PMRpro]

"paper" states: starts to rise at 2-3 AM with peak at 8:30 AM. The chart shows about 6 hours of low levels. Interesting that it seems to follow your indication of a peak about 30 minutes after rising, which would follow normal sleep patterns. I have to wonder about the current fashion of waking up at 2:00 AM to take the morning dose. Seems that it would start that 30 minute clock and disrupt the circadian clock, as well as interrupting sleep patterns. This is a tough disease.

[PMRpro Ambassador in reply to mloyuken]

Seems to depend on the person and how they deal with it - some chuck the tablet down, turn over and go back to sleep. Some can't cope. The amount of light and wavelength will also make a difference I think.I cheat - I get Lodotra which you take at 10pm and it releases all at once at 2am. It doesn't wake me up but I do wake at night, didn't used to but not out of the habit of listening for OH yet. So when the neighbours get up at stupid o'clock to go to work, the first gets out of bed about 3.45am, I wake too. I do NOT need my hearing checked ...

[HeronNS in reply to mloyuken]

I took pred at 2 am for a couple of months and was really surprised that it was no bother getting back to sleep. By mistake one evening I took it at 11 pm (popped it instead of the calcium I should have) and felt so very well the following morning I've stayed there for a while. I think for encouraging adrenal function this is not a good time so eventually I intend to go back to breakfast time. In the meantime I'm booked for cortisol level test Monday morning. Currently at 4 mg.

[Longtimer]

Thank you for that, obviously we are all different, and our "needs" too.......you have battled on, hope you are winning....

[123mossie]

I’m the article it says cortisol starts to rise at 2-3 am and peaks at 8.30am. It’s all very complicated and how difficult it is to replicate adrenal function with hydrocortisone! When I had awful fatigue & low bp my gp advised to try & get through it as increasing pred would’ve sorted the fatigue but suppressed the adrenals.

[Sho-Sho]

Very interesting paper, if a touch scary. I have been under an Endocrinologist for over 18 months now treating me for Secondary Addisons after over 5 years of pred for GCA initially at a high dose. Still struggling to taper to 4mg as experiencing high levels of fatigue & feeling pretty rubbish. The Basal Cortisol blood test result was 58.6 so adrenals, at the moment, still fast asleep. I am 77 now & beginning to think about abandoning any more tapering & try & have more quality of life. It’s all very dispiriting.

[Avadip12 in reply to Sho-Sho]

Yes , I did exactly that when I got to 2.5 mg pred and Felt dire , I upped to 5 mgs and everything improved and told my GP I was staying on 5 mgs for quality of life. However 3 mths on and all the old dire morning fatigue and hungover has returned. I have been in this yo-yo regime for quite a few years . I am now waiting for synatchen test results to see if my adrenals are still sleeping .

[Suffolklady]

That was such an good read only understood a small amount but it was very interesting. Saw Rheumatologist who is such a tool 6 weeks ago who said I haven’t got PMR and to reduce to 3mg Pred in three months, on 5mg at the time, and come back and see him good job I had my mask on so he couldn’t see my face anyway that’s another story. Under a fabulous Endrocrine team who have my back all the time. Whether my PMR has gone I can’t tell too much pain overall which is the norm for me and has been for many years. However I did have a cortisol test last week and it reads low, now on 4.5 and 4 alternative days. A week before the test I had an occipital nerve block in my head with a dose of steroid, depo-medrone for my head pains neck headaches etc I have improved greatly I feel so much better but overall feel great. I’m now buzzing more energy much more positivity and interested in life again. I do know it won’t last unfortunately. I was in the pits of desperation with pain and so low in mood and motivation. I do have neck wear and tear so I know it’s not PMR. However the Endocrine nurse practitioner who is super did say this nerve steroid block has knocked the prednisone cortisol reading out so it’s showing very low atm. I have to wait a while and have another test. She also said not to go below 4mg as this is dangerous as I do have adrenal insufficiency ( different to the Rheumatologist) There is a discussion of hydrocortisone but thinks I will always need to have adrenal support so she thinks. I don’t want to be on preds if I can help it. I did try hydrocortisone once that was years ago and felt unwell on it wondered if there are other alternatives?

[Avadip12]

Well today I had my endocrinologist appointment I requested, to discuss adrenal function. Mr siva was great , he listened to my full summary of 15 yrs on prednisolone and my 8yrs of fatigue history. I am a retired GP nurse so was able to be concise about symptoms and blood test reports. He took me seriously, didn’t question my motive. , and he concluded that he had little doubt that my cicardan clock was out of routine , and most likely due to my adrenals not functioning fully. He has ordered me a synatchen test. He also said if that is inconclusive he will still trial me on hydrocortisone 22 hr and 10 am. Finally after 8 yrs of complaining of unreasonable hung over mornings ,and weakness. I am getting support . Every person on long term steroids needs to be screened.

[Longtimer in reply to Avadip12]

Abosultely!...it took me 10 years to get a Rheumatologist to do tests and scans etc....to find out why the deathly fatigue and not being able to lower and function....cannot see an Endo because on too high a dose at 7 mg....its too high a dose to have an ACHT test, but know what my cortisol result is anyway.......it just should not take patients so long to get listened to and correct tests and treatment.......

[Avadip12]

True , the fatigue of my PMR was nothing compared to what I experienced on my lowest does of pred 2.5 mgs . I did tell the rheumatologist my biggest problem was fatigue and not the pain of PMR . When you see 5 different rheumatologist and 5 different GP during the course of your treatment that “ fatigue word “ just becomes another medical note entry. None of them were willing to explore alternative causes. Hence after my own trials of Sad Lamps , taking 2 am pred, motivational early morning walks, low carb diet. All to no avail of i improving my hung over mornings that were lasting to 2 pm .now with using the knowledge I have gained from this support page . I have seen an endocrinologist who strongly believes many patients like us are suffering from poor adrenal function. Dad2cue I was a bit confused on what you were experiencing and meant by “ adrenal Pain “

[Avadip12]

Yes understand . Thank you for replying.