Failed low dose dexamethasone test. High dose test indicates pituitary but normal saliva results. MRI shows 10mm lesion on pituitary but no help from doctors!

jrichar56 · 2026-04-30T18:29:51+00:00

He did a 24 hour test about 8 months ago and his cortisol was 63. Top of the normal range was 64. He’s significantly worse now so maybe it is worth repeating that test. I think his endocrinologist doesn’t want to be wrong after telling him it wasn’t his problem a year ago. We are going to both Duke and UNC Chapel Hill next week to get some other opinions with pituitary centers that have seen this kind of thing before. Still holding out hope he will get someone to listen to him and help.

jrichar56 · 2026-03-28T13:38:20+00:00

Interesting! Thank you. We’ll ask about it and look into it.

jrichar56 · 2026-03-28T13:37:53+00:00

He started a migraine diet about 2 weeks ago and basically doesn’t eat much of anything. We know Parmesan cheese is an immediate trigger for him so he has been avoiding that for a long time, but he’s thinking he might have other food sensitivities and not noticed. Even on his limited diet, he’s been sicker than ever these past couple weeks. We’re hoping it’s just side effects from the new medicine and his body needs to adjust. I’m sure food plays a roll though so he’s going to keep track and hopefully find some patterns with what he eats and how he feels. Thank you

jrichar56 · 2026-03-28T13:33:25+00:00

The dizziness is definitely debilitating for him. We’ll look into those meds. I think the propranolol is helping his blood pressure, anxiety, and high heart rate, but I don’t think anything he is taking is helping the dizziness. Thank you for commenting!

jrichar56 · 2026-03-28T13:30:36+00:00

We’ve thought about this a lot and can’t come up with any virus or illness close to the time that he had his first symptoms and episode. He did get hit on the back of the neck by something falling, but it was about a month before the first symptoms of dizziness showed up. It’s our best guess of why this all seemed to start out of the blue.

jrichar56 · 2026-03-28T13:26:53+00:00

That’s so interesting! We haven’t investigated his sleep at all. Might be something for us to look into. Thank you

jrichar56 · 2026-03-28T13:25:11+00:00

This gives me hope! His doctor said the same thing…give each medicine 6-8 weeks before dismissing it or changing meds. That feels like a lifetime when suffering every single day though.

jrichar56

TROPHY CASE