Disappointing cortisol blood test

[Skodadet]

Hello everyone

After a 9am cortisol blood test result of 240, I was switched from 4mg prednisolone to 25mg hydrocortisone spread over three doses eight weeks ago to try and get my adrenal glands working properly again.

Just had another 9am cortisol test and it was only 40. I am very surprised as I thought I was doing well on the hydrocortisone. I have been under a fair bit of stress lately though and pulse rate has been going mad so just been put on a low dose beta blocker. I'm wondering if the two are connected.

Best wishes to all

Skodadet

[piglette]

It is possible as Beta-blockers work by blocking the action of certain hormones in the nervous system, such as adrenaline. Have you had any feedback from your doctor?

[Skodadet in reply to piglette]

No feedback yet. I haven't started the beta blockers yet. I thought the fast pulse rate might be connected to the low cortisol. It's all a mystery!

[piglette in reply to Skodadet]

I suppose it is a matter of checking with your doctor.

[Skodadet in reply to piglette]

Yes I will ...but I always seem to get more sensible info on here than at the Doc's! Thanks for responding.

[piglette in reply to Skodadet]

I know what you mean!!

[PMRpro Ambassador]

I'm not in the least surprised at the 9am cortisol being 240 if you were still on 4mg - below 100 would be adrenal insufficiency and 240 seems quite reasonable under the circumstances. It would probably have improved as you reduced the pred anyway.

However - 25mg hydrocortisone is much more steroid than 4mg pred. The equivalent dose for 4mg pred would be 16mg hydrocortisone. so you are on the equivalent of more than 6mg pred - where you would expect the adrenal function to still be quite suppressed.

Who got their sums wrong????????

One of them is possibly wrong though - a repeat would be a good idea.

[Skodadet in reply to PMRpro]

It does seem odd. Haven't had any feedback yet so maybe they will repeat it. I have been very stressed lately so I wondered if that had an impact. Don't see the endocrinologist or rheumatologist until September.

[PMRpro Ambassador in reply to Skodadet]

Given the dose I think it is understandable - and how much HC do you take in the evening?

[Skodadet in reply to PMRpro]

10 at breakfast 10 at lunch 5 at 6pm

[PMRpro Ambassador in reply to Skodadet]

The low cortisol COULD be leading to an arrythmia of some sort. Have they done an extended cardiac monitor? You did mention it to the doctor I assume?

[Longtimer in reply to PMRpro]

You may have given me a clue to what has been happening to me lately. Since being on 6.5mg I keep getting chest fluttering, especially if stressed, also twice been near to fainting, room spins ect..I take deep breaths ect to ease it. If G P or Max rings with cortisol test result do you think I should tell them?

[Skodadet in reply to Longtimer]

I would.

[PMRpro Ambassador in reply to Longtimer]

Yes

[HeronNS in reply to Longtimer]

Sound like the symptoms I was having which triggered my morning cortisol test. Interestingly these symptoms have virtually vanished as my pred dose has been significantly below 5 mg for some time now, so I assume they must have had something to do with cortisol level. Maybe mine was too high at the time? Cortisol test was good, and I'd had no pred for nearly 60 hours beforehand.

[Longtimer in reply to HeronNS]

I am waiting for the result of a cortisol test done at the GP's this week, it was the one before 9am not taking steroids before......6.5mg too high I think to have any other test done....lowering down to 6 mg in about a week....Thank You......hoping mine settles too.....I often feel quite shaky and nervy....not like me...haven't driven for a long time....

[HeronNS in reply to Longtimer]

Yes, I was at about 5 mg when I had mine done and was told to at least not take pred for 24 hours beforehand, but longer if I could manage. I found I had no recurrence of PMR pain, but I did not handle stress well and was happy to get my dose after the test! It was the doctor's idea to have this test done when I told him about my unsteady spells. This was around Christmas time last year. As I'm still at 3 tapering to 2.5 (feels like it will work this time) have been tapering extraordinalily slowly. I now go by how I feel when measuring out the next dose rather than a predetermined schedule. At this level I'm happy to go at a snail's pace, but I was definitely more anxious to taper when I was above 5 in part because I felt, for the first time really, that pred was having some adverse effects.

[Longtimer in reply to HeronNS]

Yes, I'm hoping things will ease at the right level....not sure what that is though. Have been fine these last couple of days...but tomorrow might be very different. Ironic really that we lower the steroids and the battle changes and at times tougher!....If I feel alright at 5 mg I would be happy to stay there....and so would my Rheumy.....

[Skodadet in reply to PMRpro]

I was investigated a few months ago and there were some anomalies and it was suggested I went on a low dose beta blocker then but I declined thinking it was anxiety and I could control it, but this week it seems I couldn't. Noone has connected the two things.

[PMRpro Ambassador in reply to Skodadet]

Depends on the arrythmia - but you may need anticoagulant therapy too. Needs investigating

[Skodadet in reply to PMRpro]

Thanks PMRpro. Always good to get your opinion.

[perceptual63]

When I had a cortisol test many years ago for another issue it was checked no later than 8 AM.

Maybe the next time you have a cortisol test to have it checked at 8 AM instead of 9 AM to see if it makes a difference in bumping up your cortisol numbers. Can’t hurt.

[PMRpro Ambassador in reply to perceptual63]

A study found that doing a basal cortisol gets the same sort of result done any time between 9am and 1pm which makes timings for taking the blood sample so much simpler

[perceptual63 in reply to PMRpro]

But isn't cortisol levels highest in the early morning?

[PMRpro Ambassador in reply to perceptual63]

Yes - but it seems they don't fall significantly in that time. They peak just before you wake, 6am or so

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

[perceptual63 in reply to PMRpro]

So we are to see if cortisol is working at the peak levels or the trough levels? My test years ago was for peak levels. I’m not sure they are one in the same, but I had an ACTH test that had to be done very early in the morning.

[PMRpro Ambassador in reply to perceptual63]

Basal cortisol and the ACTH test are looking at different things. The basal cortisol is whether your adrenal glands are working day to day, the ACTH test is to see if they can react when kicked hard.

[perceptual63 in reply to PMRpro]

Okay, I had both then. My cortisol was checked and it was low at 8 AM and then it was recommended that I have an ACTH before 8 AM to make sure my adrenals reacted to a stimulation and they did. I was then sent me on my way with no further follow up.

[Skodadet]

Update: After my early morning cortisol test result of 40 my doctor spoke to the epidemiologist who said that there was no need to worry. After 8 weeks on hydrocortisone my adrenal glands are still not working but they might start to wake up in the future so to carry on with the same dose of Hydrocortisone and retest in six months.

[powerwalk in reply to Skodadet]

Sorry I'm late to this, can I ask how youmfeel on the hydrocortisone?

[Skodadet in reply to powerwalk]

Hello.....at first I felt better but now I'm not so good. My heart rate is raised and I have frequent palpitations which are not controlled with a low dose beta blocker. I get very tired, having more migraines. It is true I'm probably doing too much but I suspect it's all connected. Seeing the doc on Thursday.

[powerwalk in reply to Skodadet]

Oh good luck on Thursday. Its rough isn't it! Its hard to know what to be doing. Thank you for getting back to me. Let us know how you get on.

[marionofnorwich]

I also have signs of adrenal insufficiency via my 9am cortisol test and as far as my rheumie (Max) is concerned I can stay on 4mg indefinitely because he doesn't expect the adrenal glands to work. However although I sometimes feel tired (who doesn't) I don't have deathly fatigue or not as would describe it. I am not as motivated as I used to be ( I was a bit of a superwoman) but that is not a bad thing at my age (69) as it is time for others to take over but I don't feel that there isn't room for improvement. My cortisol levels tested via Synthacen test at 4mg were not flat, just not at 450 after an hour