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High cortisol levels in blood - being tested for Cushing's syndrome/disease

5 replies

RumHam · 24/07/2022 11:30

I went to my GP with a small hump on my neck and they ran some morning cortisol testing and it came back elvated at 717 so I have been referred to endocrinology for Cushing's testing.

I am scared out of my wits. My GP thinks maybe my steroid creams for psoriasis maybe have caused it but I haven't used them since March/April this year. That is also when I noticed the hump and thought it was bad posture for a while. I have gained a stone in weight over the last year but managed to lose half of it since. I was 12 stone 2lbs in December and now I am 11 stone 6lbs.

Have any of you ever been tested for Cushing's? I am terrified to have it in any sense but I could just about cope with having it caused by steroids or a benign hormone secreting tumour. My fear is I will be one of the very few unlucky ones who have it caused by a cancerous tumour. My health anxiety is so bad these days. I was diagnosed with psoriatic arthritis in Nov and lost my dad suddenly to a cardiac arrest a week later and then my uncle to a cardiac arrest not long after that too. Death and illness have been too close to home lately.

Just need a hug really 😔

OP posts:
Rummikub · 19/12/2022 19:35

I’m so sorry you had no replies. I’ve only just come across this. How are things now?

RumHam · 20/12/2022 18:12

NHS endo closed my referral even though it marked as urgent by my GP. I hadn't heard or seen the endo, they just closed the referral so I'm waiting to see a private endo in March :(

OP posts:
Rummikub · 20/12/2022 18:17

That’s shocking Rum! Did they say why they closed it?

RumHam · 20/12/2022 18:25

Nope, I only found out yesterday when my podiatrist checked the referral when I mentioned it. She said she couldn't see any notes, just that it was closed and that my GP should be/should have got in contact with me. I never asked when it was closed. I was too upset and angry. My GP did warn me that they could do this as the endo dept is swamped. My GP even wrote to my rheumatologist to try and get them to ask any of their endo friends to take me on as a favour because the waiting lists are soooo bad!

OP posts:
Rummikub · 20/12/2022 18:32

Awful Rum, not surprised you’re upset.
Glad you have a private endo booked.

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