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

[Monster1996x]

I have all the signs of high cortisol (constant bloating, round face, heart palpitations) and I am waking up at 3am every morning.
I requested my cortisol levels to be checked, and my GP issued me with a cortisol blood test that needs to be between 8am and 10am.

I requested a 24 hour test (urine or saliva) because I am most concerned about my cortisol spiking at times when they shouldn’t (3am).
My gp said no because ‘it’s normal for cortisol to fluctuate’??

She then told me that a urine or saliva test is ‘too specialist’ and I’d need to be seen by endocrinology. The waiting list for this is 10 months.

I’m just not seeing what a blood test would achieve if my cortisol isn’t spiking at that specific time.

Is it just me or does this not sound right?…

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

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.

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.

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.

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 🙄

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.

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.

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

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 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?)

How can you be so sure?

@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.

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

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.

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

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

Yeah only neurology or endo can request serum rhubarb levels

Hi all just an update.

My cortisol blood test came back extremely high. Range was between 100-600. Mine is 995….