Very low Cortisol result

[Maggimay]

Hi in October 2017 my cortisol was 233 I just had blood results and cortisol is 49. Was called into hospital had loads of blood tests and a test to see if adrenals were OK They were. I then had MRI scan to look at Pituitary which is OK. I am now waiting for and appointment to see and endro doc. I have been and continue to feel grim. Although I asked no one seemed able to tell me why this dramatic drop should have happened. Just wondering if anyone has any insights into this. Thanks Maggi

[Hidden]

Wow that is low! What time of day was that taken? Have they started you on steroids? At that low dose they should have given you some as it's dangerously low. Your cortisol in Oct is also on the low side, did they give you steroids then? I'm not surprised you feel grim. If you feel worse, start to feel shaky, start vomiting or have diarrhea then you need to call 999 & tell them you are having an adrenal crisis.

[greygoose in reply to Hidden]

You can't tell how low they are without seeing the ranges. Ranges differ from lab to lab.

Maggimay , do you have the ranges, please?

[Hidden in reply to greygoose]

Sorry I know the ranges vary but that is VERY low!

[greygoose in reply to Hidden]

As you wish.

[Maggimay in reply to greygoose]

All we have is a thing that says for early morning samples levels should be greater than 230 nmol/ It says levels less than 70nmols are consistant with hypoadrenalism I have had a synacthen test for my adrenals and they function normally and the MRI excluded pituatary tumour. Have been told I need to see endro urgently but no sign of appointment. They said it was so low that I was called in for those emergency tests but now I am left feeling grim but no appintment.

[greygoose in reply to Maggimay]

I see, so it is very low. But, I doubt if anyone knows why it dropped like that. You might have to chase up that endo appointment a bit! Don't just leave it, will you?

[Maggimay in reply to greygoose]

I don't understand why it was considered so low a to be an emergency with 2 days of horrible tests and the need to see endro at once and now l am here in limbo not having seen endro and feeling grim

[greygoose in reply to Maggimay]

Because very often in the NHS, the left hand doesn't know what the right hand is doing, and messages don't get passed on, and appointments don't get made, and that's why you have to keep chasing it up, I'm afraid.

[Maggimay in reply to greygoose]

You are right l know this due to bitter experience over many years. Anyway they have been contacted. They are awaiting test results Unable to discover what tests. Am weary and find it hard to keep fighting. Thanks for all the help

[greygoose in reply to Maggimay]

You're welcome.

I do know how you feel.

[Maggimay in reply to Hidden]

No steroids feel grim but no D & V

[Maggimay in reply to Hidden]

Have had no steroids

[Emyloulou]

I’m currently going through testing for adrenal insufficiency. What tests did the do that were ok? A short synacthen test may be ok( I passed this, just) however if it’s secondary AI rather than primary you may need need an insulin tolerance test( it’s looking like I’ve failed that one).

I’ve spent the last 5 months feeling dreadful and not knowing why but without knowing what to ask for I would still be no wiser.

Having said that though if your cortisol was taken at 8/9am that is very low and would normally be an automatic diagnosis x

[Hidden in reply to Emyloulou]

Hi Emyloulou, I'm sorry you;re being tested for adrenal insufficiency . Have you made contact with the UK Addison's Society? If you are on Facebook then there is the UK addison's help & support which offers a lot of support. I have secondary adrenal insufficiency from a pituitary tumour so a bit different from your experience. It's not a "fun" condition!

[Emyloulou in reply to Hidden]

Hi Pauline,

I’m a member of the Facebook group and to be honest I wouldn’t have got this far without there help. I have a pituitary mri in 4 weeks to check if there’s anything going on there because it’s looking like secondary rather than primary.

To be honest I’m glad that I might finally have a reason for the fact I’ve felt like I have for the past few months. The only good thing has been losing most of the weight I put on in the 4 years I was told my thyroid was “normal” 😡 x

[Maggimay in reply to Emyloulou]

Can you direct me to FB group. Please

[Hidden in reply to Maggimay]

It's called the UK Addison Disease Info & support group - there are some very knowledgeable on there.

[Maggimay in reply to Hidden]

Thanks

[Maggimay in reply to Emyloulou]

THey did tests where they took blood 3 times and at one point gave me a painful injection to test adrenals then took blood again then MRI No mention made of anything else. Can you tell me what AI stands for Thanks

[Emyloulou in reply to Maggimay]

Sorry AI is adrenal insufficiency. It sounds like they did a short synacthen test which will test for primary AI(Addison’s) but sometimes won’t always pick up secondary for that you need an insulin tolerance test. I passed the Synacthen test, just but it looks like I’ve failed the the insulin tolerance test.

If you have the results Pauline may be able to give you a bit more advise about them x

[Maggimay in reply to Emyloulou]

Thanks will try to get results

[Maggimay in reply to Emyloulou]

The other thing they did was a chest x ray. I asked but was not told what this was for.