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?…

It's vanishingly unlikely that you have high cortisol.

But even if you do, you need to go through the process - standard blood test, and then they can refer onwards based on the results.

Part of the problem is that social media is international and you get a lot of people from the US posting about doctors and tests. It appears to me people there (with the means or cover to do so) can run around getting all sorts of tests on demand. Their advice is of little use in most other countries.

Interestingly, despite all the tests, the posters are rarely getting a proper diagnosis. They are also at the mercy of a system where medication and treatments are directly marketed to patients so they can request them from their healthcare provider - even if they themselves have an alarming lack of the most basic medical knowledge.

Diagnosis should be a structured and logical process. I'm not a GP but I believe they operate on the basis of evidence based diagnostic pathways.

Cushings is vanishingly rare. Everyone thinks they have it and almost noone does. You would have noticed a marked change in your appearance, red stretch marks, muscle weakness etc. A 9am cortisol isn't helpful but the GP can organise a dexamthasone suppression test (take 1mg of dex at midnight, cortisol should be suppressed at 9am). GPs can't request salivary or 24 hour urinary cortisol collections.
You would need to see an endocrinologist for diagnosis, but referral wouldn't be accepted until you'd had 2 abnormal dexamethasone suppression tests (endocrine specialist speaking!). And even with 2 abnormal dex suppression tests its almost never cushings.
Maybe get your thyroid checked though!

Had you considered peri menopause? Bloating and heart palpitations v common there.

ALL the symptoms of high cortisol? Really?
Do you have a fatty hump?
Purple stretch marks all over your body?
Thinning hair?
High blood pressure?
Unexplained bruises?
Muscle weakness?
Distinct flushing of the face?

Or face you just put on weight and have palpitations?
Weight and palpitations are so common that it's ludicrous to think you have Cushing. 🤦🏻‍♀️

I was thinking that too.

Once your doctor accepts that you know more than her, I'm sure she will agree with the diagnostic path which you recommend. Just be patient (if you'll pardon the pun).

lol

Have you been watching all the influencers?

Honestly. This is why GPs have had enough!

Ahhh gotta love the power of social media. Makes people think their primary health care service is a pick n’ mix counter.

Cortisol levels are having a bit of a moment on social media. If you want a test based on trendy info that your GP doesn't think you need, then you'll have to pay for it I'm afraid 🤷🏻‍♀️

I'm not sure why everyone has to be so rude. My cousin was told she was too young to have breast cancer in her 20's do dispite being refered to the breadt clinic, they didn't do a ultrasound or biopsy, probably arrogantly laughing at her stupidity. It was cancer, and she died before 30. no one in the nhs took her seriously so scoffing is a bit dangerous.

OP cushings is either a tumor or steroid damage so you have to think if either fit.

I had a few symptoms and I have had seen multiple consultants over three years and no one once has mentioned cushings. Look into other causes. Have you got high blood pressure and or overweight? If you tick all the boxes for cushings then it's a referal. I'd say it's so much more likely to be something else. I had really weird symptoms and there was no cause found. Looking at my bloods it's more likely it was low vitamin D and low iron.

I was thinking exactly this.

https://www.gdx.net/uk/products/adrenal-stress-profile

You can get a private test done with Genova Diagnostics; you will need a referral from a healthcare specialist - there is a link on their website for this, or you can try Optimum Health Clinic in London / online, or Dr Sarah Myhill.

As someone who has adrenal insufficiency and would be dead without treatment, it doesn't sound like you have Cushing's Syndrome based on the very small number of symptoms you describe.

What you are requesting is a day curve, a very expensive and unpleasant day spent in the hospital being injected with various things and then having your blood tested, it's not fun and it's not something that they would do unless there were very serious clinical indicators. Even then, it wouldn't continue overnight, it would be 7am-7pm at the most.

Try these for the 3am wakings.

Fellow adrenal insufficiency sufferer here and I concur.

She hasn't got Cushing though!!!

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

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.

Sounds like my perimenopause symptoms

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.

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.

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