Tests for adnenal function

[BloomingtonIndiana]

My rheumatologist has tapered the prednisone to 5mg per day. Is there a blood test to determine whether my adrenal gland is beginning to "wake up" and start producing cortisol. The only blood tests he orders are ESR and CRP.

[Doralouise77]

I had the test about 6 years ago when I came off Prednisone for the first time. I went to the hospital emergency department where a nurse started an IV. A blood test was taken, then a doctor administered ACTH through the IV and several blood tubes were taken at different intervals after that. It was really quite simple and later I was told that my adrenals were working. It's done under the supervision of medical staff in case you need treatment if your adrenals aren't working. It may not be done the same everywhere. I hope this helps.

Cheers

[BloomingtonIndiana in reply to Doralouise77]

Thanks for your response. I have an appointment October 3rd with my Rheumatologist and like to be prepared with questions.

[polkadotcom]

It's not as simple as just 'a blood test'. It often means a hospital appointment lasting several hours. The tests show only whether your glands are capable of making adrenaline, not that they are actually doing so.

Few rheumies will agree to the test being done - it is expensive and means taking up hospital time. I have had two appointments, but that is because I have no adrenaline supply and they like to keep an eye on me.

[jinasc in reply to polkadotcom]

How did they originally find out they were not working please?

I am interested as this is new to me and I am always willing to learn.

[polkadotcom in reply to jinasc]

Sambucca, for 3 appointments running he had asked me if I had tried to reduce from 5mg and 3 times I had said no - because I just had a 'feeling' that I couldn't do it. He is a good Rheumy and at that point he said that it would be as well to check, which of course resulted in the diagnosis of secondary adrenal insufficiency. I have no idea where my 'feeling' came from.

For the record I was fine on 5mg for 3 years following that appointment. It was only during last summer that it began to unravel, but the situation was so complex with osteoarthritis pain plus surgery plus also a major fibromyalgia flare that it was hard to tell what was what. Another adrenal test was done early this year, which resulted in the dose being raised to 7.5mg with a review coming up in October.

I truly don't think I can be considered as a run-of-the-mill case and feel it will be difficult for anyone to learn anything from it. It is my belief that all like cases will be as individual as PMR is!

[jinasc in reply to polkadotcom]

Thank you friend. I thought it might have been something that triggered it off and it was - your feeling and instinct.

Sorry it all had to unravel as well. I know you are not a run of the millcase. But you are special.

[polkadotcom in reply to jinasc]

Ah, thank you

[bowler]

I have been taking Pred for 17 years. My Rheumatologist ordered an adrenal test, and it was the same procedure as Doralouise77 This was over a month ago, I haven't heard anything since, so I assume my adrenals are ok, my next appointment with my Rheumy is in Oct. However I was taking 10 mgs of Pred at the time and wasn't confident of an accurate result, I did point this out to the Rheumy but he still ordered the test. All I was told was not to take my Pred on the day of the test.

[jinasc]

Following a visit to A&E, they sent a letter to my GP asking him to refer me to anEndocrinologist for a Synacthen test which he did.

The Consultant then booked a test and two weeks later, I went to the hospital at 8.30am, sat in a comfortable chair (I had been warned to take a book if I wanted to - I did). A canula was put in and they took a blood sample. I read my book but as the Chair was so comfortable I fell asleep.

At 11.30am they woke me up and said 'all done, off you go' the results will be available within 7 days. 5 days later, GP rings and tells me - OK they have woken up and now functioning. After that test I slowly reduced down to 2mg and then remission.

The test is recommended when you have been on long term pred and high doses. We get older as these illnesses progress and things don't work as they did when we age and run into problems. 7.5mg and below is when the test is useful.

[Gosingen in reply to jinasc]

Finding these replies most useful. I'm presently on 9mg, reducing by 1/2 mg a month, never been below 8mg since diagnosis, and often feel very fatigued, now wondering if I too should ask for this test to see how my adrenals are performing or not as may be the case. This site is so useful, thanks to all who contribute.

[Caro12line]

Hi. Agree with Polkadotcom. Several months ago when I was tapering from 7mg to 6mg, I asked my Rhuemy about the test and he said no, it was expensive and didn't prove much. I am now tapered to 4mg using "dead slow" and although I think my adrenasl are sluggish, I am guessing they have kicked back in a bit or I would feel it?

[HeronNS in reply to Caro12line]

I think we'd know. I went through a stage at 7 mg and later at about 5 when I felt completely "flat" but just took my time with reductions at both stages and although I'm certainly not the energetic bunny I was at the beginning of the pred journey I'm capable of doing a fair amount and not collapsing afterwards, so assume adrenals are functioning. Have heard it can take up to a year after discontinuing pred completely for all hormones to be back in balance, so early days yet. I'd be concerned if fatigue started and did not lessen with time, or even got worse.

[Caro12line in reply to HeronNS]

Thanks HeronNS. Good description "flat". Yes I feel that from time to time but not the extreme fatigue. I'm just taking it slowly slowly and fingers crossed, no flares and eventually the adrenals will be back fully functioning. An early sign for me is that hair has started to grow back on my legs. Haven't had to shave for well over a year!

[DorsetLady PMRGCAuk volunteer in reply to Caro12line]

Hi,

Oh, that's something to look forward to! Must have saved a fortune on hair removal "stuff" over the last 4 years!

[Caro12line in reply to DorsetLady]

Lol. Hair growth on my body is a bit erratic! Hair stopped growing on head, armpits and legs. But I have peachy down growth on forearms and sides of face. Plus the odd strong hair on my chin which I pluck. Quite weird 😳

[DorsetLady PMRGCAuk volunteer in reply to Caro12line]

Yes, agree with most, except my hair, which after the initial illness, has always been okay.

As you say - weird.😀 But then life never gets boring!

[PMRpro Ambassador in reply to Caro12line]

if your adrenal glands aren't working you would soon know below 5mg - you would become increasingly fatigued, really numbing fatigue that makes PMR fatigue look like a beginner! Over time you would then develop other symptoms of an adrenal crisis of the chronic variety. If you are under a lot of stress - accident, infection, emotional - then you may have an acute adrenal crisis where the symptoms occur very quickly and you collapse. That is why we should always carry a steroid card or (even better) wear a MedicAlert bracelet and always tell any healthcare professional of long term corticosteroid use.

As Heron says, even when you have completely stopped pred, it can take up to a year for your body to get back to normal production of cortisol in response to stress.

But adrenal crisis fatigue is more than just "flat" - you feel pretty ill too.

[BloomingtonIndiana in reply to PMRpro]

Thanks to Pmrpro for your comments on adrenal function. I sometimes experience extreme or as you call it numbing fatigue. After a brief rest my energy level returns.

I don't believe any of this amounts to an adnenal crisis. The US websites refer to prednisone withdrawal without discussing the adrenal gland.