Adrenal fatigue - very low Cortisol

[Surrie]

Hello fellow companions on the PMR/GCA journey. If anyone has had experience with very very low Cortisol levels I would appreciate hearing from you. I will be seeing an Endocrinologist in August but I am really suffering with extreme fatigue and muscle weakness and pain.

[PMRpro Ambassador]

A few details on current pred dose and the cortisol levels measured would be useful to make sensible comments. You'll find a fair bit about adrenal problems in the FAQs too.

[NursePeggy in reply to PMRpro]

I have had PMR for 8 years and cannot get below 6 mg because of severe fatigue, muscle pain etc. I saw a functional GP who gave me a 24 hour cortisol test to do. My cortisol (as she put it) flatlined over the whole day.

I saw an endocrinologist who suggested I stay on 7.5 mg and didnt seem too concerned about it. I am still fatigued and I too have dreadful muscle pain and weakness if I try and do any housework or gardening. I saw Mr Hughes when my cortisol was 24 last year, and he said to reduce by .5mg very slowly, but I could not get below 6 mg. I really dont know what to do now.

[PMRpro Ambassador in reply to NursePeggy]

Of course your cortisol flat lined - you are on enough pred to stop the HPA axis triggering the production of cortisol. It's a bit like the central heating boiler not being switched on to produce heat because the woodburning stove in the room with the thermostat is providing enough.

It is not only the adrenal function you have to worry about - you have to be on enough pred to manage the inflammation or you will have a resurgence of the PMR symptoms. And frankly - I suspect you may well have overshot the dose you need for that - you aren't heading relentlessly for zero, you are looking for the lowest effective dose that manages your symptoms.

Prof Sarah Mackie was talking to a group of researchers about the "2 year PMR myth" the other day. There are increasing numbers of us on the forum who have had PMR for a long time - and they are finally starting to look at it. Recurrent/relapsing and Long PMR are far more common than a lot of doctors appreciate.

[123mossie]

Hi Surrie sorry to hear your suffering awful fatigue, it’s miserable isn’t it. Your current dose of 7.5mgm - have I got that right- is around the physiological dose your body needs so the adrenals haven’t yet had to wake up properly. Your exercise regime may be contributing to how you feel just now, maybe try doing short walks only, or take a complete rest for a while. I understand your wish to regain fitness , me too but we can only do What the pmr allows us at any given time. I’m very impressed by you walking el Camino! But patience is the key, you’ll regain fitness again but not quite yet.

[SheffieldJane]

I have experienced really low cortisol levels when I was tested at 5 mgs. I slow tapered down to 3 mgs and following a Synacthen test, I was told that my levels had responded to the test by reaching healthy levels of cortisol in response to the test. I would like to say that the deadly fatigue recovered, but it didn’t. I manage it by having a regular nap of 90 minutes ( body’s choice). This buys me the energy for an evening. Any outing or event is followed by extreme fatigue and I sleep to recover when I can. I actually think I will miss the “ time out” that a nap affords me. I will probably miss it when it goes.I did get an GCA/ LVV diagnosis some time after and had to return to GCA doses of 40 mgs. I am now down to 6 mgs with the aid of Tocilizumab which has now stopped. The fatigue seems worse of late. I can sleep for 12 hours and then still nap. I hope my adrenals can recover again. The Endocrinologist will test me when I get to 5 mgs. This is proving hard with a return of PMR symptoms and stabbing head pains. I do feel muscle weakness and balance issues. I hope you don’t contract GCA and Sail through from now on. It has set me back. My fatigue may well have begun to lift. I used to get buzzy awake feelings in the early hours for no reason. I assumed little bursts of cortisol.

[SnazzyD in reply to SheffieldJane]

I was the same at 6mg. I also know what you mean about the missing the time out of solid naps when they were no longer needed.

[PMRpro Ambassador in reply to SnazzyD]

What gets me is I find myself nodding off and SO tired - but when I go and lie down to try to sleep my brain is going 15 to the dozen and I give up after about half an hour because lying in bed awake is even worse! And I can't even get to sleep in the day after waking at 3am for the day ...

[Longtimer in reply to PMRpro]

Same here, however fatigued, and struggling to stay awake I am, I can never fall asleep in the daytime. I envy those who can. At night I have radio on very low to distract my racing head....but still wake a couple of times in the night. Last night unusually I didn`t, I`m putting that down to being in the middle of 7mg to 6.5mg drop and absolutely feeling exhausted.....getting a couple of hours each day feeling ok, so digging in to keep going. Have asked for a morning cortisol test at the surgery, was told because it was so early...before 9am, I would have to wait 5 weeks!....

[PMRpro Ambassador in reply to Longtimer]

If it helps - a basal cortisol can actually be any time between 9am and 1pm according to one of the papers. I understand the early appointments are all taken by diabetic pensioners weeks in advance - sod everyone else!

[Longtimer in reply to PMRpro]

I learn something every day!...thank you...

[SnazzyD in reply to PMRpro]

Yep

[Sharitone in reply to PMRpro]

My current solution is to read Dickens!

[PMRpro Ambassador in reply to Sharitone]

When I start reading a book - I always want to finish it! Even Dickens ...

[Sharitone in reply to PMRpro]

I'll finish it in the end. But in the meantime, it will have got me to sleep a lot of times. Actually, I'm being a bit disingenuous - I also take part of a Zopiclone tablet.

[SheffieldJane in reply to PMRpro]

I find that a soothing audio book tricks me into nodding off. At present Little Women - poor sweet Beth.

[powerwalk]

I've had a synachten test about 18 months ago with basically non existent adrenal response. I had been lower on pred but had to increase it because i literally was spending the day on the couch! I have not managed since to decrease below 5mg pred and in fact on 5.5 but still struggling. Good luck with the Endo. Let us know how you go.

[Sho-Sho]

I am on a similar journey to you, mine being GCA related - when I reached 7mg started experiencing severe adrenal fatigue, at 6.5mg my Endo tested the adrenal glands which showed virtually no activity, reduced slowly to 5mg where I have stayed for 9months as just didn’t feel well enough to go on reducing. The Endo did another test a few weeks ago & although still a very low reading it showed they are stuttering into life, & I am definitely experiencing more energy & feeling better. So now beginning to taper by .5mg v slowly. So hope this is helpful.

[SnazzyD]

Hello, low cortisol feels like this but so does PMR to some extent which can make this phase tricky to navigate. All Pred does is cut in inflammation not the autoimmune activity so if it’s up, you can still feel tired. 7.5mg for me was a really bad time because it is still high enough for some people to still have enough adrenal suppression still but not enough to feel well. The only way to get past this is to carry on reducing slowly, in my case by 0.5mg introduced over 4-6 weeks but slowing as I got lower. I don’t understand why Cortef was given because all it is doing is adding extra corticosteroid to further suppress the adrenal axis. It’s the lack of steroid that triggers the action. I felt pretty grim form 7ish to 5mg when it became low enough for my adrenal axis to realise it had to work, albeit sporadically. In that time I had to cut my activity because anything was too much and I wanted to sleep a lot. Once under 5mg it got easier, not easy, but easier and my good days outnumbered my bad. My Endocrinologist was wanting me to reduce at 1mg per month to zero but I refused, saying that I still needed to function to some extent. They had to option but to wait while I did my own thing. Between 5and 1mg I was reducing over periods of 8-14weeks.