Fluctuating Cortisol Levels. Consultant mentioned secondary Cushings and potentially Addisons within 5 years due to unconfirmed asthma

[kay159]

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

[endomad]

It sounds to me your consultant does not know what to do. Do not accept live with it, do some research find a consultant that specialises in adrenal stuff. I have good thyroid endo, my cortisol very low and other than offer steroids he has no expertise in adrenal. Yours sounds far more serious than mine you need a referal to a specialist but you will need to name them for your gp to refer so get researching. Hopefully someone can recommend a consultant. X

My mum has had asthma and been on steroids most her life but didn't end up with addisons so not sure I would agree with Dr's assumption but steroids are notoriously hard to wean off.

[Hidden]

Sadly not many Endos are conversant with adrenal/pituitary issues. It sounds as though you may have cyclical Cushing's where your cortisol levels go up and down, so sometime you are high yet other times low. You need to find an Endo who is conversant in the condition. If youo are on Facebook there is a Cushing's UK group on there where you will get some more help in finding an Endo in your part of the country. Cyclical Cushing's is rare & hard to diagnose but it is possible to diagnose. I had Cushing's disease due to a pituitary tumour & now have secondary adrenal insufficiency due to my pituitary not working. You may well end up with secondary adrenal insufficiency due to the use of steroids. Addisons is primary adrenal insufficiency.

[Pascha1]

I am following this,

I also have a fluctuating BP , which my GP asked me to record for 3 weeks to which I see her next Wednesday,

I have energy one day and no energy another day

Gp tells me that she will fill in my Endo who I am to see in the next month as she said it is definitely and endocrine problem, to which a bit silly of me I forgot to ask exactly what she thought it was but will ask her next week

I have severe headaches lately as well, , I will watch this see if anyone answers you on this .. I hope you get to the bottom of whats causing it,