Jack Forrest speaks to us about his patient journey through Cushing's Disease from diagnosis, treatment (medical, surgery and radiosurgery) and beyond.
This is needed on a larger scale. Please never stop sharing your story! Awareness is soooooo necessary. I remained undiagnosed for 17 YEARS, and I was only diagnosed after I self diagnosed. 💜💜💜💜💜💜 QOL is horrific, I’m fighting for disability (still, since June 2021) haven’t been able to work since mid 2019. Illness onset was 2004!!!! Was misdiagnosed w PCOS and anxiety, depression, panic attacks. Was ALWAYS Cushings. Severe delay in diagnosis left me with persistent Cushings. Same as Jack, my levels did not decrease or normalize post op. Got down about 50% but still high. Im now testing more and PRAYING I won’t have to beg for the BLA I clearly need. My tumor was tiny 1.5mm I have thyroid nodules and Hashimotos due to all this. I went to Doctors every year since 2004 I BEGAN WITH ENDOCRINE bc I knew!!!!! Im so upset!!!!!
Thanx for sharing ur story mate. I didn't quite understand, did they check your hormone levels, in particular cortisol in your blood and urine at the very beginning, when the symptoms of sleep problems began? Or did it take 2 years for the "doctors" to figure it out?
