Cortisol

[fitness1]

Hello everyone. I have hashimoto's and have been on levothyroxine for years. However I'm still always exhausted. Anyway I decided to have some private bloods done with blue horizon. My t4 and t3 are in range but on low side. But what really concerns me is my cortisol is sky high. Should be 113- 450 mine is 892!!!! Has anyone had high cortisol readings? Thanks in advance

[rosetrees]

I'm not expert by any means. But have you considered ordering a saliva cortisol test? This measures your cortisol levels at 4 different times in the day so you can get a better, overall picture. If they are all high, might be worth asking your doctor as high cortisol could, possibly (as in, might not) indicate a tendency to Cushings Disease.

[humanbean]

High cortisol readings could be caused by Cushing's Syndrome/Disease or by taking steroids for another health condition.

pituitary.org.uk/informatio...

You ought to share your test result with your doctor, who should refer you to an endocrinologist. They'll probably re-test you first before referring.

Was the test performed from blood taken first thing in the morning? Doctors try to capture the level of cortisol when it is at its highest which is roughly 8am - 9am in people who sleep at normal times. For shift workers or permanent insomniacs their maximum cortisol could be at other times of day.

If the test wasn't taken first thing in the morning and you sleep at normal(ish) times then that makes things worse - a first thing in the morning result would be even higher.

[Hidden]

Okay the first question is what time was the cortisol done? Although even if it was done first thing in the morning it is high & needs further investigations. I had Cushing's disease caused bt a benign pituitary tumour producing too much ACTH, ACTH is the hormone that stimulates the adrenal glands to produce cortisol. High levels of cortisol can be caused by long term steroid use; a benign tumour in either the pituitary or adrenal glands; severe depression & alcoholism. Oestrogen HRT can also give elevated results but I don't think as much as yours. Have a look on the Pituitary Foundation website for more information. If you are on Facebook & in the UK then I'm admin for a group called Cushing's UK where we can give you help & support. If not I'm happy to chat with you by private message.Just to say, if you need to see an Endocrinologist then it needs to be one who is conversant with pituitary/adrenal issues & works at a Centre of Excellence.

[fitness1 in reply to Hidden]

Sorry I replied further down x

[fitness1]

Thank you all for your replies. I had the test done 7.40 am and have ordered thr saliva test. Also will call my gp tomorrow. Just guessing it will be a while before investigations. From the research I've done it could be Cushing syndrome although I'm not over weight. Or I'm more stressed than I thought 🥺

[fitness1]

Hi thank you so much for your comment. Yes I've come across pituitary tumors while looking into Cushing disease. Do you mind me asking what made you go to the gp and how they tested. Not sure how high my levels are. I will definitely join fb group too 😊

[Hidden in reply to fitness1]

Cortisol is at it's highest level first thing in the morning & then drops through the day, so around 8-9am is should be between 450-550nmol/Ls, so yours at 892 is high. For me the tumour was found by chance as I'd gone to see my ENT doctor as my sense of taste & smell was compromised & he thought I had some nasal polyps again, I didn't but they saw a 1mm pituitary tumour, at that stage it wasn't secreting excess ACTH but started about 15 months later. Testing takes some time as they want to establish where the high levels are coming from before they move on to scans. So the first steps are an early morning blood cortisol done between 8-9am, it can come back at normal levels but stay high during the day rather than dropping. A 24 hour urine test, at least 1 or 2. If they come back as high then they will do the Dexamethasone suppression test to see if the meds will drop your cortisol levels, if it drops to under 50nmol/Ls then it's not so likely to be Cushing's, but you can suppress & still go to have Cushing's. It is important to see an Endo who understands Cushing's as most of them don't have experience of it as it's rare. I had high BP, increased weight gain although not as much as some people, insomnia, weak muscles, thin skin, easy bruising. Your GP can do the early morning blood cortisol & 24 hour urine.

[fitness1 in reply to Hidden]

Thank you again. I cant seem to find any answers on internet but if Cushing's is ruled out what else could it be?

How are you now after surgery? I hope your well x

[Hidden]

High levels of cortisol can be due to long term steroids use, severe depression or alcoholism. HRT & oestrogen can give elevated results.

|I'm much better now the high levels of cortisol have gone but I would be lying if I said I was back to normal. My pituitary gland never "woke" up so I am now steroid dependent.

[fitness1 in reply to Hidden]

Mmmm I don't think any of those apply to me.... guess I need to wait and see now.

Glad things are a bit better for you. How are you finding the steroids? I wish you continued health x

[Hidden]

Fine because I'm only replacing what I don't make naturally.