Cushing’s syndrome- AIBU to expect further tests?

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Hi everyone. Just before the pandemic, I got really ill and there is long term damage to my heart as a result. I was investigated for Cushing’s at the time but the results were not conclusive, they thought they could see something on my adrenal gland in one scan, but not in another, and then they ruled it out due to it being rare.

Earlier today, I saw a tiktok where it went through some main indicators and I feel like I tick off SO many of them.

I was also meant to have a pelvic ultrasound as investigation into a PCOS diagnosis, but covid stopped all that. I’ve also found out that there is a big crossover between PCOS and Cushing’s.

I have quite bad medical anxiety anyway and feel like I’ll be fobbed off as a nuisance but would you expect/ demand further tests, even though it was ruled out two years ago?

Hi,

If you feel like you have a lot of the symptoms I’d definitely go back to your GP and see if they can run some more tests.

My dad had Cushings Disease (so tumour on the pituitary gland as opposed to adrenal glands) and it’s took 7 years to diagnose! He was in his mid 30s when he was diagnosed and he saw so many consultants and they somehow didn’t put all the pieces together….he ended up being diagnosed by a 3rd year medical students who recognised the symptoms from a textbook, quite unbelievable really.

He has quite a lot of ongoing health issues as a result of is being left untreated for so long.

Hopefully you can get a referral to an endocrinologist. Not that you should have to but if you are in a position to perhaps a private consultation with one to speed things along?

hope you get some answers x

Thank you for sharing and I’m sorry things were so tough for your dad.

I am worried about the ongoing issues. I’m going to be on medication for life anyway, but if my high cortisol levels are due to Cushing’s rather than simply stress, I’m concerned about things getting worse.

Maybe private would be a better option.

My friend has this and was brushed off saying it was too rare so couldn't possibly be. Keep pushing, like you she was the one telling them and ticking of the symptoms before finally being taken seriously and having to have a significant tumour removed that they then found.

Family member was diagnosed with Cushing after so many drs dismissing them.
They had the tumour removed etc. they were actually diagnosed with Cyclical Cushings
That's why it was so hard to diagnose

That’s ok, I think with it being in the 90’s the information just wasn’t so freely available so my parents just relied on the doctors for all of the answers.

I think NHS or private just have all of your symptoms noted down along with Cushings symptoms lists to compare. Appointment times are so short you could save some time. As @SprinklesCake said, I think if you present them with your Cushings symptoms as opposed to just letting them take the lead they may be more likely to investigate it further.

Even if they don't find an adrenal (most likely benign) tumour, there are urine tests they can run to measure your cortisol levels and decide on treatment - these are specialised tests to be done by an endocrinologist, not a GP

It can be managed with medication, surgery is not always necessary or feasible

If you bring this up with a GP, do not under any circumstances mention tiktok. It is unlikely to end with you being taken seriously.

Thanks everyone.

When I was in hospital, my cortisol levels were sky high and I had several tests, including saliva and urine. All came back high.

Good advice about preparing a list. The tiktok video was basically a woman saying ‘if you have this this this and this, you might have Cushing’s’ and it made me look at the typical symptoms all over again. I have a big stomach but very skinny legs, the ‘buffalo’ hump on my neck, red, moony face, I bruise so easily and have fertility issues. My blood pressure is managed with medication but very high without it. But I wouldn’t tell the doctor that I’m there because of tiktok!