slightly low cortisol results

[Rosina1871]

Hi. I’m currently on 4.5mg of pred and some days felt very fatigued. Not every day. I requested a cortisol test and it came back slightly low, 334 and I understand it should be over 400. I have been advised to have a synacthen test. Not sure what the treatment is for low cortisol. Is it staying on current dose of pred for a while or is there medication. Many thanks

[PMRpro Ambassador]

It probably would be over 400 if you weren't taking 4.5mg pred which is still enough to suppress cortisol production and for for the body to know it doesn't need to produce as much cortisol. Who advised you to have a synacthen test?

There is little point you having a synacthen test at the moment - your adrenals are obviously producing cortisol and that is all the synacthen test will tell you. The way to improve the cortisol level is to taper the pred dose slowly and as it goes down, the cortisol production should go up. That is the ONLY way - nothing else encourages the production of more cortisol, no magic pill to take.

Once you are down to about 3mg it will be worth doing the basal cortisol level again. If it is then over 400 -450 there will be no point doing the synacthen test, that shows that the adrenal glands are working normally. Even at 3mg pred there may well still be some adrenal suppression but it isn;t the end of the world. Even after stopping pred altogether it can take up to a year for everything to get reliably back to normal.

[Rosina1871 in reply to PMRpro]

thank you so much for this. It was the rheumatology department that advised it. So I may request to cancel for now. Perhaps I should stay on 4.5 for at least a couple of months and see how it goes. What do you think please?

[PMRpro Ambassador in reply to Rosina1871]

Do you feel OK? Not any really overwhelming fatigue? If you are doing well - and with a cortisol like that I'd imagine you are despite the odd days of fatigue - I would keep trying to reduce a bit if you can. You can always stop if it gets too much. Try keeping a diary of activities and symptoms - I bet your fatigue days come after a good day when you did too much!

One very good rheumy likes to keep his patients at 5mg for up to 9 months and that lets the body catch up. The lower you can get, the more the body is stimulated to make cortisol and to a great extent it does depend on what you MUST do, If you work or have caring responsibilities then fatigue is more of a problem but at some point you do have to get through this, How you do it is up to you - some ladies just almost hibernated at these dose until it happened. Certainly smaller steps and longer between them will help.

[Rosina1871 in reply to PMRpro]

I have good days and nor so good days and look after my 15 month old grandson twice a week. I am quite active once a week line dancing and a senior keep fit class on a Wednesday evening so perhaps I’m expecting too much not to be fatigued on certain days. Will continue to reduce my pred slowly

[PMRpro Ambassador in reply to Rosina1871]

Looking after a 15 month old would flatten me!!! Well done you - and yes, I'm really not surprised you are tired

[Rosina1871 in reply to PMRpro]

sorry if I’m being really stupid but if my cortisol is slightly lower than it should be before I took my pred then I assume it would boost up to normal or thereabouts once I’ve taken it. Or am I missing the point. I think I’ve lost the plot. Or without the pred I would be deficient. Guess I’m not very bright 😳

[PMRpro Ambassador in reply to Rosina1871]

It means that things that need cortisol to function work well. But it doesn't mean you will function as if you are healthy and everything is normal. Apart from anything else, the body gets spikes of cortisol as support for stresses of all sorts - taking pred is just a bath of steroid and there all the time - but not always as much as the spikes when you really need it.

Think of it a bit like your car when the gas pedal isn't working right - when you get to a hill you'd press on the accelerator to get more of a boost to keep your speed up but sometimes that isn't working and you end up crawling up the hill!

Why not very bright? Medicine and biology aren't simple!

[Rosina1871 in reply to PMRpro]

Thank you

[Wizards in reply to Rosina1871]

My cortisol levels are 30 now that's exhausted. Taking care of a child 2x a week would flatten me.

I went out to dinner to a friend's and before you know it it was 11pm and I was exhausted the next day

and had to just go for anniversary dinner the next day and it wiped me out.

I spent the 3rd day vegitating.

I'm in adrenal insufficiency and at .5mg and it's taken 7yrs to get there very slow and never a flare.

The endocrinologist wants me at zero by January to maybe run a stenachin but have done blood at 2mg and 24hr urine at 1mg.

Hope this puts adrenal insufficiency into perspective for you.

I wish I could do what your doing. Go slow.

[Rosina1871 in reply to Wizards]

wow. Thanks for your reply. I’m obviously doing much better than I think. I will take my taper very slowly. Good luck to you x

[Wizards in reply to Rosina1871]

I hope it didn't come off as criticism? I just wanted you to know how someone felt who is in adrenal insufficiency. You really have to pace yourself and it was my mistake to accept back to back dinner invitations.

It can take me days to recover. Being a lump on a log is so not me but it is now and I feel for my husband because I just can't help out as much.

I so long for the times before PMR and just don't know if that will ever come back.

I feel robbed sometimes of the best years but I'm fortunate that I could retire early and not worry financially and be able to travel.

So I have to remind myself of the positive.

[Rosina1871 in reply to Wizards]

It didn’t come across as criticism at all. I’m sorry you are suffering so badly. I’m absolutely shattered after looking after my grandson and have to take it easy the next day. I always try to arrange a rest day in between the busy days. It’s frustrating but we will get there.

[Wizards in reply to Rosina1871]

Absolutely. You haven't been on prednisone that long so take it easy.

[Rosina1871]

Many thanks for replying. My adrenals must be working so for the moment I will continue to taper very, very slowly

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro re further test -maybe have a look at this re adrenals in general -and “Nudging them into working” paragraph towards the end. It really just a matter of time, a slow taper and patience….

healthunlocked.com/pmrgcauk...

[Rosina1871 in reply to DorsetLady]

many thanks for your reply. It’s confusing why they want me to go for a further test when all it means is I need to taper slowly and adrenals are obviously working to some degree!

[DorsetLady PMRGCAuk volunteer in reply to Rosina1871]

Not sure they always know to be honest….and as said, test only shows adrenals are capable of working - and you already know that!

[Rosina1871 in reply to DorsetLady]

thank you

[PMRpro Ambassador in reply to Rosina1871]

It is because they themselves don't understand how it all works. It sounds so easy to say "have a synacthen test to see if the adrenals are working" but the basal cortisol test shows that (or not) as well for a lot of patients and doesn't require a hospital appointment. Yes, there is a an equivocal response in the middle - but for us that is almost always because we are still on a dose of pred that is enough to suppress cortisol production to some extent and that is different from non-longterm pred patients who have a low cortisol, The concept of using the basal cortisol level is fairly recent, since about 2017, so non-specialists probably haven't come across it.

[Rosina1871 in reply to PMRpro]

thanks pmr pro. I have had this response from my rheumatology department. See below

It is likely you are physically dependent on steroid - I will send a steroid emergency card.This means you should never stop the steroid suddenly, if you are unable to take the tablets or are vomiting you should seek urgent medical advise.During periods of illness for example infection you may need a higher dose of steroid again medical advise.I will let Dr Karim know

[PMRpro Ambassador in reply to Rosina1871]

At last someone is recognising the long time pred user effect! But it doesn't alter the fact a synacthen test will show nothing you don't already know and we keep reminding and talking about. It is clear why your cortisol is low (well, it is to me!) - they are working and at present you are taking enough pred so they also know they don't need to do more. Like the central heating boiler doesn't run when the thermostat in the living room shows it is warm enough because the wood burning stove is lit. Once the wood burning stove burns down and goes out, the boiler will start up again.

[Rosina1871 in reply to PMRpro]

thanks again. I assume I just need to taper very slowly and wait for my adrenal glands to catch up. I hope they do! Your input has been very helpful.

[PMRpro Ambassador in reply to Rosina1871]

That's right. And if the fatigue takes over at a lower dose and the cortisol level isn't recovering to normal MAYBE a synacthen test MIGHT be worth it. But that's in the future.

[Rosina1871 in reply to PMRpro]

Thank you

[Rosina1871]

just to add I didn’t take my pred before the cortisol test as advised by rheumatology

[piglette]

I had dreadful fatigue at 5mg and hung on there a few months, when it got better I started to reduce. The important thing is not to increase because of fatigue unless you it is debilitating. I did increase to 6mg I must admit as I was zombie like.

[Rosina1871 in reply to piglette]

thank you. I’m going to stay on 4.5 for a couple of months and then go to 4

[piglette in reply to Rosina1871]

Good idea, how the fatigue improves.

[agingfeminist]

No easy way round this one. I had dreadful fatigue at 5mg-4mg (on 4mg as a minimum for about 6 months). Deathly fatigue was horrible and I had to keep working (only at home online fortunately). Managed to grab a conscious hour here and there. But now at 3mg and things are definitely improving. I have no doubt my adrenals have woken up...and so have I.

wonderful that you can dance...I am still trying to overcome pred induced muscle myopathy...and a 100 meter walk is a major achievement. And looking after a 15-month-old...you are doing so well. The fatigue will pass...you are on a really good path to recovery...keep going slowly and patiently

[Rosina1871 in reply to agingfeminist]

thanks so much for your reply. Looking after a 15 month old is a challenge but so rewarding. Going dancing helps me mentally although I have to force myself sometimes. Fortunately I don’t have to go out to work

[Suffolklady in reply to agingfeminist]

I must say it’s good to hear the positivity of getting adrenals working. I’m still on 4.5 mg and have been since Jan this year I haven’t reduced as I have thyroid troubles too. I do have good days and bad days but I more often than not have bursts of energy where I feel fairly ‘normal’ one minute and I completely crash the next which is hard if I’m out and I need to get home and sleep. It’s not great as I find it’s a uncertain outing. Also when I wake in the mornings I get this unusual surge if energy like pins and needles in my hands and feet and slight anxiety within then within 5 minutes it’s gone. Very weird.

[agingfeminist in reply to Suffolklady]

Definitely the worst part of the PMR journey since being diagnosed. Falling off the energy cliff is so scary...I had it for over 6 months. My son accompanied me to medical things, otherwise I didn't go out. I am still very careful not to overstretch my energy...but now it is a slide into collapsing fatigue rather than the plunge. But it does get better...I now glimpse a flickering light at the distant end of a tunnel.

[Rosina1871]

Thanks so much for your response. Never knew there was so much involved with pmr. Appreciate everyone’s useful comments