Confusing adrenal/pituitary issue, all started with low blood sugar
Hollow everyone. I’ve been through the wringer as I’m sure we all have.
I’m new to this community so if someone could direct me to the right forum or. Connect me to similar users that would be incredible.
Here is my situation.
Several years ago I started having low blood sugar. I passed out and got carted off in an ambulance. I also have a heart arrhythmia and the symptoms are similar. Sweaty, nausea, pale clammy skin. Might pass out. Hard to tell the difference between the two if you arent used to it. So the first time it happened I went and laid down like I usually do when I’m having palpitations. Woke up in an ambulance with low blood sugar. Took me almost 2 years to get to an endocrinologist and he ran a lot of tests on me. During this time I started gaining weight despite a healthy diet.
My cortisol levels were normal most of the time. But I had persistently high acth. He decided to do a glucose implant. My blood sugar was low 24/7 sometimes dangerously.
He decided my pancreas must be making too much insulin but the excess acth made no sense so he referred me to a doctor at a state hospital who teaches endocrinology.
This doctor also ran a bajillion tests.
Through him I found out I have a growth or possible hyperplasia on my left adrenal gland only. I also have a flattened pituitary gland. And my acth is continued to be elevated. Nor did it suppress during a long high dose dexamethasone supression test. He suspected that I had an ectopic production of acth but my ct scan didnt find anything in my chest.
Meanwhile I’ve gained 80 pounds in the last year and my energy had tanked to nothing. I also have extreme cold spells where my temperature drops and I need multiple blankets to bring my temperature back up. I now have chronic mild abdominal pain, Indigestion, nausea and low appetite.
In my last labs in early December my thyroid was normal but my electrolytes weren’t and my calcium was low.
This is where I’m at.
Currently waiting for insurance to decide my fate. Scared to be honest. This whole situation has spiraled and I feel worse and worse the more time passes. I’m also nervous about waiting 6 months to be seen at mayo. I had an appointment last week but couldn’t get insurance to get their act together in time.
Ugh. Such a stressful situation. Thank you all for listening and understanding. Heck even if no one reads just typing it all out in a place I know other people might understand felt nice.