Hi. I’m new on this site but I wanted to share my AI stories, answer some questions and hopefully find some more resources to help us with this challenging condition.
I’m reading that a lot of people on this site seem to be taking their steroids orally. I too was started on oral medication, dexamethasone, until I was put on a steroid pump that gives me Solu-Cortef subcutaneously throughout the day so that it mimics our natural cortisol levels. I was given an old diabetic pump that I fill with solu-cortef instead of insulin that I wear 24/7. The pump makes a big difference - it’s not the “cure” but it is much better (IMO) than the alternatives.
49 yo Female (injury at 35)
MVA with traumatic brain injury (2005)
Secondary adrenal insufficiency
Decreased HGH (growth hormone)
Decreased vit D
The traumatic brain injury damaged my pituitary which is the cause of all the hormonal deficiencies. The pump allows me to regulate and administer amounts of steroids depending on my symptoms and that keeps me safe from going into adrenal crisis but I still have very little energy.
I hope this helps people in their journey to find answers. Although I feel that I’m better off since being on the pump I still don’t live any kind of normal life and I’m still researching, looking for answers and hoping there’s more out there.
I’m hoping that someone out there may have more insight, someone that knows of a specialist, a hospital, a miracle anything or anyone that can try to help. I live in the US but I’m willing to travel anywhere to find answers.
Thank you in advance for your help/advice.