My doctor won’t do a 24 hour cortisol test?

Yeah only neurology or endo can request serum rhubarb levels

Depends on the cause its most likely pituitary or adrenal tumours (often benign) so operate and remove

I'm a Dr. Yes they're correct. The normal test to check for raised cortisol is a 9am cortisol level. Yes cortisol fluctuates continuously hence the result is meaningless if not taken at 9am

If you've got raised cortisol cos of pathology it will be raised at 9am too, it won't just magically disappear.

Random spikes are normal, random high spikes won't cause your symproms, that would be persistent raised levels

Yes 24h rests would be a v niche endo test that gps won't have access to

Do as your Dr has asked and go from there

There is a superb Cushing’s UK Facebook group, please join if you haven’t already? Loads of advice and support, discussion of tests and recommendations for centres of excellence. The group logo is a zebra, as most people looking at a 4 legged neighy thing would think horse and not look further to the more exotic zebra.
Cushing’s is one of those diseases that is supposedly really really rare so doctors don’t like to diagnose it. I wonder how many more diagnoses there would be if doctors actually listened to patients and didn’t just dismiss symptoms. I was lucky, a consultant in another field noticed my symptoms and referred me.

Where did I say she had? I seriously doubt it is. But I don't think posts ridiculing help anyone do they.

@Itsnotjustatiktokthing but her GP is taking her seriously by offering a cortisol test - and he/she will then decide what happens next based on results. Which will either be more complex testing and a referral if she needs it - or treatment based on another issue raised on her blood tests 🤷‍♀️

You can't just go to the doctor, say you have three incredibly common symptoms, decide you have a rare disease and need XYZ. The NHS doesn't work like that.

How can you be so sure?

I have Cushing's Syndrome and have recently had my adrenal gland and attached tumour removed so I know a thing or two more than those posters on here who have been so rude to you. You may, or may not have Cushing's and I think it's disgusting that so many people think it's okay just to mock you in the way they have.

My tumour was found quite by chance and I by no means had all the symptoms listed. I put all my symptoms down to middle age and menopause and didn't for one minute even suspect that they were possibly connected.

There is an excellent Facebook group you can join to ask questions to others who have been through the whole process of testing, surgery, recovery and sometimes re-occurrence. They certainly have more knowledge on the subject than any GP I've ever spoken to about it because it is quite rare and some GPs never come across it at all. Make sure you join the UK group though (assuming that you are in UK?)

The GP has explained that it is specialised test done by endocrinology. They have offered you an alternative. Either take the test and be referred to endocrinology if indicated or pay private for the test you’ve googled/found on TikTok.

I'm not on TikTok nor know what the latest trends are so had no idea cortisol was the new thing 😝most ppl have no idea what it is or for. but I also suffer from adrenal insufficiency and have never had a 24 hour test.

I've done the 12 hour ones and they are awful as PP have said

But even if you are worried everything starts with the morning blood test to test your "resting cortisol"

Do it and see what it holds

Is this where we are now?

Making demands of GPs?

I honestly think it is incredibly entitlted and arrogant to go to a doctor and tell them what you have self diagnosed is wrong with you, and what tests you need doing.

I hope the responses in this thread have made you realise how out of order you are being.

This reminded me of my FIL who was a gastro-enterologist. He told me about a pt who was on the way to see him with his 24hr faecal fat collection, in a bag, he was waiting at a bus stop.
Someone on a bike flew past and nicked it.
Sorry to derail.

High cortisol is just the latest 'health and wellness' trend on TikTok/Instagram which, btw, are not actually literal lifestyle guides. Usually these 'health and wellness' PSA come with a product that will 'cure' it 😆

You can't diagnose yourself based on what you see on SM and then make demands of your medical professional. He has recommended a blood test so that's where you start. You go from there.
At least this trend is much easier to definitively dispute than the explosion of other ones that resulted in a gazillion self diagnosed people who like to advertise their 'condition' and start sentences with "I have...." because that's who they are now 🙄

I think this an unreasonable test for a GP. You may be able to request this in the private sector. If you have a high cortisol it will show up on the blood test.

Some people just store fat round their face and middle - it's unfortunate but not likely to be Cushings. Palpitations are far more likely to be caused by something else.

Your GP is acting entirely appropriately.

If they truly suspected Cushings, they'd get you to the endo ASAP.

The GP who suspected it in my relative went above and beyond. For a couple of reasons the diagnosis would have been thought very unlikely and the GP spotted other, lesser known symptoms and referred my relative. They now live a relatively normal life, but it always hangs in the balance and is stressful for them to manage.

Or at least just go with what the Dr has quite rightly advised! Why start a weird thread about 24 cortisol / just annoying.

Bloating, palpitations aren't even symptoms of Cushing syndrome.
The whole thing is just an internet diagnosis based on misinformation

An adrenal imbalance is not just as OP describes a couple of minor discomforts. It's serious. Going to the GP and saying you think you have Cushing's disease because you've been feeling a bit bloated and having heart palpitations is like going to the GP and saying you must have a brain tumour because you had a couple of headaches recently. Except sort of worse because by saying you think you have Cushing's, you're indirectly saying you think you have a tumour too.

There's at least 2 PPs (myself included) who live with adrenal insufficiency, the opposite of Cushing's, and it's a serious, potentially fatal, chronic disability which requires constant management. I'm lucky that I can usually live a reasonable normal life with it, but that depends on my "normal" being quite different to other people's normal.

Honestly so many people here are being really unkind. I have a condition that is much rarer than Cushing's. It was a pain to get diagnosed despite having classic symptoms because everyone just goes "oh no that never happens".

The point is that if you do have Cushing's, which is unlikely but certainly not impossible, the test your doctor has proposed is appropriate and you would need to be managed under endocrinology anyway so the best thing you can do is proceed with the test offered which is likely to indicate if that is actually a concern.

Sounds like my perimenopause symptoms

You don't have all the symptoms at all.

It's not just a round face, Heart palpations and waking up fgs.

Cushings is extremely rare from "natural" causes (a tumor) and you'd have lots of other symptoms to get to an endo.

If you're truly concerned, pay to see a private endo and they'll sort the testing and pop you back to the NHS for the rest.

Yup, as is waking up at 3am and not being able to get back to sleep.

She hasn't got Cushing though!!!