The type of Doctor does exist. Usually found in a larger hospital or at a university, and look for a pituitary center. It would be very unusual to involve the hypothalamus but it can happen. ACTH is often low because of lousy lab handling more than a real problem. Sad but true. The draw degrades fast. If the tech bins it, it dies.
Your doc has you on a pretty low replacement... 15 total is on the low end... Most people do at least 15 in the morning but people vary widely (some of my friends live on 10 total).
Do you get copies of your tests and MRI reports? Was the MRI done with contrast, and was the contrast done so the uptake was recorded (you were not taken out for the injection)? If yes, then you had a proper pituitary MRI, aka dynamic.
Hope you find a good endo soon... They may be able to get another read on the images.
We live pretty close to Yale, and am under neurologist care there. My condition is so rare that they want to write a paper on me. Been searching and calling all day and most specialize in diabetes, not HPA injuries. What makes things complicated in that my brain injury was organic and affected lots of different areas. Most endo's used to seeing TBI based HPA problems, that are focal generally tend to get better quicker.
More bloodwork back today, FSH and LH both 0. This is presumably because the t-therapy makes them shut down. TSH lowish at 1.16 (0.358 - 3.74 scale). Free T4 right in the middle of range. Insulin and Prolactin both elevated 20-50% over max range on all recent tests, even before starting t-therapy and HC.
BP and HR have been all over the place for the past year with a range of 90/55 (fainting) to 245/170. HR in range of 70 - 240 at extremes, mostly 120-140 range.
My MRI was with and without contrast with pituitary slices. So sounds as good as it gets without a PET scan.
What is the deal with 'emergency' hydrocortisone shots, and how long should I expect this adjustment to take, weeks or months? If hypothalamus based is known at tertiary AI, but does anyone really care if it's secondary or tertiary?
A neurologist cannot treat pituitary. There should be a pituitary center at Yale, and otherwise some good docs in that area.
Did you have a stim test before starting the HC?
Pet scans are not usual for pituitary. We get lots of others, but not that one. What about a medication to lower prolactin?
If you are sick, and not near help, you need to carry an emergency kit. A needle, solu-cortef or solu-medrol, alcohol pads, instructions, extra meds and even a anti nausea med is helpful too. Don't keep in the car, heat degrades the meds.