Posted elsewhere by my daughter. Hoping you can help
Does anyone have issues with highly fluctuating cortisol levels?
I had a cortisol test 6 week ago and my cortisol was very low (58). I had the ACTH Stimulation test and was today told that the results of this were a high baseline cortisol level which went extremely high
I had testing in 2015 for an adrenal tumour as I have fluctuating blood pressure and was told back then that one cortisol level was high, and the next was low, 12 I think he said. Tumours were ruled out. Most other results were indicative of Cushings but they also ruled that out
I have been told by the consultant that my cortisol is fluctuating, giving symptoms of Addisons disease one time and secondary Cushings disease symptoms another. Was told there's no treatment that could help and basically to live with it, but to be aware that steroid use (I take steroids during bad asthma attacks) could lead to permanent Addisons disease. He said to expect Addisons within 5 years if continue with steroids at present rates (8 courses in last 15 months). Im 23. I feel really upset this is happening especially as I also have issues with my autonomic nervous system and MCAS so basically not 100% sure the asrhma is actually asthma or linked to MCAS.
Does anyone else have these issues with cortisol? They did mention it could be due to autonomic issues. My BP is all over the place, I have tachycardia (baseline 120s) with periods of brachycardia, POTS, CRPS and developed hospital aquired pneumonia which never seems to have settled except when using steroids
Im at a loss. I feel like I ticking time bomb and am constantly being told 'live with it' but getting no answers just steadily more symptomatic
Thanks