Cortisol levels extremely high

[Monster1996x]

I have lots of symptoms (oily skin, high heart rate, always extremely tired, mood swings etc) and had to fight for a cortisol blood test.

Finally the results came back and the average range was 100-600.
My result was 991.

it’s extremely high and yet my doctor has told me to “just reduce stress” and “change your lifestyle”.

I recently had hormone blood tests too with extremely low estrogen and LH.

Could these all be linked? Do I need to be pushing for a diagnosis of something else?
Or can anyone recommend any treatments?
should I see a private endocrinologist??

I am scared!!!

Dr Amir Khan.. only talking about this today on his Instagram page..

https://www.instagram.com/reel/DCl5XlmM-Ta/?igsh=MWpnZHhsZGhmYngxYg==

Have you heard of cushings syndrome/disease? Do you have any other symptoms of it?

That's definitely not a normal reading and needs investigating. I'd definitely push for a referral.

I’m so scared :( my local endocrinologist is £200 just for a consultation but I’m tempted…

Stupid question but have you tried reducing stress, doing some low impact exercise and meditation?

I do yoga and meditation!

OP, what time of day was the blood test taken? A random cortisol level means very little because people have normal variations in how much cortisol is produced at different times of the day. The only thing it would show is that you don't have an absolute adrenal deficiency (presuming you weren't on steroids when the test was taken).
There's also a lot of factors relating to menstrual cycle that will affect estrogen and LH levels: without that context, interpretation becomes meaningless.

Symptoms like feeling extremely tired are really common, up to 20% of the population (that's 1 in 5 people), but it's really hard to make an underlying diagnosis with blood tests (can find out why for about 5% people with symptoms, that's 1:20).

I understand that you're feeling scared by the result that you've seen, but Dr Google/ mumsnet isn't really the answer here. "Pushing" for certain blood tests hasn't helped you.

If that result was a morning cortisol test result (between 8-9am) you should be referred to an endocrinologist with that result. You need investigating for cushings. (I have Addisons disease which is the opposite, low cortisol- I’m in the U.K. Addisons group on Facebook and we have a lot of people who initially had cushings and then went the other way, long story but basically yes you need a referral to endocrinology).

Yes it was at 8:20am.
Should I just pay to see one privately? I was told the Endo waiting list is months 🥴

If you have the money and want to be seen more quickly then why not, but your doctor should absolutely be referring you via the NHS.

The Pituitary Foundation has an endocrine specialist nurse helpline which may be useful -

https://www.pituitary.org.uk/helplines/

Please do not panic. IF it is cushings or some sort of pituitary issue they are usually very treatable - cushings can be due to a small non cancerous tumour on the adrenal glands which are easily removed by surgery; or by a non cancerous prolactionoma or pituitary tumour which secretes too much of the hormone that signals cortisol production. (I have had a pituitary tumour for 20 years now, never had surgery, controlled with medication, mine has caused all sorts of issues but oddly enough not cortisol - I have Addisons and don’t produce any cortisol at all however, once you have one autoimmune issue you tend to develop more sadly).

That’s not actually true. Yes a random cortisol blood test can be unreliable because cortisol does tend to taper off and fluctuate throughout the day but an 8-9am cortisol blood test is the initial starting point for assessing Addisons / adrenal insufficiency or cushings. The NICE guidelines have recently changed and now - in the case of adrenal insufficiency - they are saying a normal cortisol result for 8-9am should be around 300 (it used to be 450) in order to make adrenal insufficiency unlikely. 900 plus is a very high result indeed and possibly indicative of cushings. Referral to an endocrinologist is the next step- in the case of suspected adrenal insufficiency it would require an sst test as the next step. Cushings would require different tests.

If someone is on any oestrogen - HRT or combined pill- this can falsely elevate cortisol levels (even transdermal oestrogen despite what many endocrinologists think) but a result of 900 is high even taking this into account.

I am very stressed and have some mild trauma from growing up. Could it just be this? Or is it too high to not be Cushings?

It’s impossible to say. That’s why it’s important to have the correct tests.

cushings can be due to a small non cancerous tumour on the adrenal glands which are easily removed by surgery;

That's interesting. I'm under investigation for that but was given a cortisol test. Still waiting to see the Endo though

Can you ask your GP for the test to be repeated? If it's still high you definitely need to push for a referral or just pay for a private consultation if you can afford it. High cortisol at that level can have a serious health impact. The Pituitary Foundation's helpline will also offer advice. I think you're right to be concerned though and need it looking into.

I shall join the chorus of people suggesting you speaking to The Pituitary Foundation. They are very helpful.

Try not to get hung up on every single blood result you have. There are so many variables its difficult to quantify.

Unless you have £200 to thow away I would take a moment to breathe.

Why did you think your cortisol was abnormal?