Living with Panhypopituitarism. How to live with Panhypopituitarism?

Not sure who posted it. I have lived with pan-hypopituitarism for over 30 years. I was diagnosed after my daughter was born. Not sure what it the specific question but more than happy to help answer questions.

Living with Panhypopituitarism is not the easiest thing, but it certainly is possible. After living with this disease all my life (21 yrs.) I recommend doing what you can to combat and live peacefully with your symptoms. Depending on the symptoms you face, you may always be some form of uncomfortable, but you're seriously ill, after all. . Also, remember to not get sick... trust me... you have to go to the hospital if you even vomit after taking your meds... let alone having a fever, that could kill you...

It is also incredibly important to adhere to the dosages and schedule that you and your Endocrinologist have set and also to go to your Endocrinologist appointments whenever they are scheduled. This allows you to get blood work when your Endocrinologist needs it, but also to discuss any new symptoms or concerns with your Endocrinologist. Also, always refer to your Endocrinologist if you are ever unsure about a symptom, dosage, or situation, also be sure to wear a medical alert bracelet and remember to take your meds as well. Doing this may lessen your symptoms and greatly lessen your risk for Adrenal Crisis, other life-threatening symptoms, and subsequent death. It is so important to follow your endocrinologist's instructions regarding your health and routine as well, as they are/should be experts on Panhypopituitarism. Also, make sure to tell all healthcare professionals you use about your PHP and adrenal insufficiency so they know what meds or treatment to give you in accordance with your existing meds and body function. This information is, especially, paramount if you are going to be undergoing surgery or other traumatic procedures, as you need to tell it to the medical staff so they know to give you a proper stress dose in return.

Having a supportive family is also key, I believe. But really, just do what makes you, personally, live your best life with Panhypopituitarism. Also, Don't be afraid to advocate for yourself in the face of those who may not understand or who may challenge you and your wellness. No one knows how you feel but you, so if you don't stand up for yourself no one will and you may find yourself in a situation that could have been avoided if you had spoken up about your healthcare needs. Also, don't be afraid to advocate for yourself in the face of those who may not understand or may challenge you and your wellness. No one knows how you feel but you, so if you don't stand up for yourself no one will and you may find yourself in a negative situation that could have been avoided if you had spoken up about your healthcare needs. Doctors, peers, bosses, teachers, and family members are all just people, just like you, so don't be afraid, because you deserve to be respected and as comfortable as possible in your own skin.

I have lived with panhypopitutarism for almost nine years now. It can be very daunting to know the challenges you are living with as it is a medical condition which is life threatening. However, if you understand what the condition means and how you can keep yourself safe by educating yourself with more knowledge, I assure you will be in a much better place to move on with life with more positive vibes. Above it all, it is important for you to have regular checks with your endocrinologist and blood works done to monitor where you are at with your hormone levels. It is extremely crucial for you to take your medicines (hormone replacement) consistently and at the correct dosage. Always take a symptom/symptoms such as migraines, headaches, fatigue, body ache and so forth as SERIOUS as they can be life threatening.
I am thankful I have survived from hypernatremia which I had twice within six months in between and nearly killed me if I had not been to my GP to be asked to be admitted to the hospital.
Thank you, Ty for sharing your testimony above. Great pointers and input!
I am much encouraged and feel supported knowing I am not alone here to experience this rare condition.