Trying to live with Panhypopituitarism

Posted by kfxston @kfxston, Jun 8, 2023

I was diagnosed with panhypopituitarism in the year 2000 and have since gotten a number of nasty health conditions caused by my having this disease. Probably because of this disease’s rarity, I haven’t as yet found a group to share thoughts and ideas with. Is there anyone out there who also has this illness?

Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.

Colleen Young, Connect Director | @colleenyoung | Jun 8, 2023

Welcome, @kfxston. I moved your discussion to the Diabetes & Endocrine System Support Group (https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/), where you'll find other members talking about endocrine-related conditions, including panhypopituitarism.

I'm tagging fellow members like @mpflood7 @barbiejk @jmb73 @jg1985, who have experience with panhypopituitarism and can share with you.

@kfxston, was the journey to getting the diagnosis hard? What are your challenges living with panhypopituitarism?

kfxston | @kfxston | Jul 20, 2023

In reply to @colleenyoung "Welcome, @kfxston. I moved your discussion to the Diabetes & Endocrine System Support Group (https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/), where..." + (show)

Thanks for putting my post into the appropriate place. I’ve had Panhypopituitarism for a long time - it took nearly ten years to get it diagnosed. I saw a great many doctors and finally got the diagnosis in Boston at Mass. General Hospital in January 2000. I am very grateful to them. This disease is very rare and it was determined that mine may have evolved from trauma to the head. I’ve since gotten other health issues like severe osteoporosis, chronic kidney disease, TAVR aortic valve replacement, etc. The osteoporosis made such a mess of my back that I had to have back surgery. Unfortunately, an error occurred during the surgery and I was left with more pain than I had prior to the procedure. I would love to return to the years when I was free of pain and free to live a normal life.