Recently I made a new friend through a meetup group online. He's a 40 something man who is post-op pituitary surgery. He was on hydrocortisone for 4 months and then his doctor took him off the hydro as well as his Synthroid because in the doctor's words: "You are cured. You no longer need these medications." The poor man has been in terrible pain ever since. He is on pain killers for all the aches and pains, has no energy, and has told me more than once "I would rather be dead". I have been encouraging him to see a Cushing's expert, hopefully one who also is well-versed in thyroid disorders.
You see, when a pituitary patient is hypopit, it's not always as obvious when looking at test results, because in that case it's the pituitary that doesn't signal the thyroid, not that the thyroid itself isn't working. The doctor needs to know how to interpret the results, and unfortunately most pcp's and many endos don't know how to do this.
I don't know if my friend is hypothyroid, but I would bet you a dollar that he is too low in cortisol. His symptoms go right along with that. But my friend doesn't understand why he'd need to go back on hydro since he has successfully weaned. So he's been resistant in considering that this might be his problem. His doctors never told him about adrenal insufficiency, about emergency meds, or wearing a medic alert bracelet. He doesn't have Solu-cortef for emergencies and was not given a crisis letter to carry in case of emergencies. Let me make this clear: He had never even HEARD of adrenal insufficiency until I told him about the possibility last week.
Today I heard from him and he was in bad shape. He went to the ER several days ago, and they didn't do anything for him except check his heart. He was having trouble breathing, and he is in general in pain all over. Even though he told them he had recently had pituitary surgery, they didn't check his electrolytes or his cortisol levels. They sent him home feeling just as bad as when he went in. He knows he is going to lose his job over all of this, and that's the least of his worries right now. He wants to die.
Tell me why this has to happen. Are endos unaware of the possibility of adrenal crisis and possible sudden death because of it? Is that possible? Or do we matter so little to them? Or do they believe that giving us needed information will empower us and make us less reliant on them? Do they just forget?
I would really like an answer to this question. Patients deserve better.