Cushing's Online Event with Prof John Newell-Price

[@Nat524Ricci]

So glad to catch the replay here on KZbin! I have pituitary Cushings Disease, was diagnosed in 2020 but onset was way back in 2004! Faced misdiagnosis and dismissals for years. These types of discussions are soooo necessary for patients like myself!! Thank you so much!!

[@Nat524Ricci]

Absolutely I have severe tachycardia and high blood pressure w my Cushings.

[@Peanutbear879]

Me too now 😢

[@Nat524Ricci]

I am on Isturisa as well and cortisol has normalized to 12.5 during the AM, unsure about late night but almost no symptoms have left. I’ve only been on it 3 months but yeah, it also causes androgens to go up and thus worsening hirsutism. The dose needs to be increased until control is reached. If it doesn’t get there, I want a BLA. Unfortunately I contracted MRSA during my failed pituitary surgery and ENT says I should never have another pituitary operation. :(

[@N19824]

Just discovered this channel . I had cushings 2004 I only have one adrenal gland now and not on medication. Can you manage with one adrenal gland ? I haven’t been medication for years now . I just always have in my mind I could get poorly again . I don’t have any endocrine appointments anymore or anything.