Trying to live with Panhypopituitarism

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?

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.

hello, I have panhypopituitarism and diabetes insipidus since birth, and I created this account to try to find people like me. I’ve always felt lonely because I can’t really talk about this with others.

Welcome, @joaoguimoreirame. Isolation due to a chronic, life-long condition is hard. You've come to the right place to connect with others like @mpflood7 @barbiejk @jmb73 @jg1985, who have experience with panhypopituitarism.

@joaoguimoreirame, what helps you?

A FB group called Panhypopituitarism has been extremely helpful to me. As our condition is rare, many in the group are from different parts of the world, but you may connect with others near you, too. I’ve learned more about my condition through this group of real people vs medical ‘experts.’ People can share, and ask any question without judgement. We are not the only people with an invisible condition, but it can feel like it at times. Please join the group and know you’re not alone!