No adrenal tumour - good news??

[MusicalFurbaby]

Hi gang, it’s been a while, I’ve been flaring and seeing lots of doctors. Last year I was investigated for a suspected adrenal tumour which has been giving me heart-related episodes for about 2 years. I did the MIBG scan last Nov which came back clear - no tumour!

While I was relieved to hear the news (it’s always good news not to have a tumour), I now feel like we don’t have the answer. My specialist prescribed Hysone on the theory I might have a problem with cortisol, however, I’ve been taking it for a month and feel worse than ever. So I’m ceasing that med as of today.

I haven’t had any heart-related episodes since early Dec 2021, which is good news. But I’m finding it a bit hard to view this as all good news, as I still don’t know the underlying cause of the problem, meaning it can resurface at any time. This is more than a little worrying: I’ve been hospitalised 8 times so far for this problem.

I guess I’m feeling a little disheartened today. Feel free to throw any ideas my way, and please remind me there is hope and things will (probably) get better!