What to expect at Pituitary Center

[lindsaydf]

I have posted on here a few times asking questions about my husband. This Thursday he has his first appointment at Washington University's Pituitary Center with an endocrinologist. I am wondering what to expect from a first visit. We have had not had the best of luck with doctors and I feel like having the wrong approach with a doctor will hinder diagnosis.

Basically right now we know that he has secondary hypogonadism and it looks like he has central hypothyroidism. He has a lot of symptoms I have spoken about before along with treatment resistant depression, anxiety, and anger. He's never had any kind of MRI and has really only had his gonadotropins tested along with a thyroid panel. So, even though it has been a few years and he even tried testosterone replacement therapy, we're kind of at the very beginning of the journey.

What should we expect the doctor to do at this visit? We don't want to waste our time on an endocrinologist who won't be interested in helping. We would like a full pituitary function work up and specifically to look for Cushings. Basically, we just want to prepare as best we can so that we do not offend the endocrinologist by demanding tests but we also do not want to waste our time with an endocrinologist not interested in performing tests. I'm thinking a good endocrinologist at a pituitary center would be willing to investigate all pituitary sending and receiving hormones as well as ordering an MRI.

Also, we were going to type out a timeline for his symptoms with pictures to show his changes. Would this be overboard? Does anyone think it will be a turn off to the doctor? We also thought of bringing some relevant case studies and the like. We're just kind of at the end of our rope and every month we wait for a doctor appointment is a month that my husband gets worse. He has been so weak lately he can hardly rise out of his chair some days and in the last month his eyes look puffy like they're swollen. It just seems like he's deteriorating or aging way too fast. Advice anyone? What can we do to make the most of this doctor appointment and what should we even expect?

[rumpled]

I hope they do a full history and ask questions. They should do a physical and ask him to do things like squat (in the Cushing's world, we can't do squat, as we say)... and check for hallmarks like the fat pads, stretch marks, hump and all the lovely things this disease does to us.

I suggest bringing in some pictures to show a progression - just a few - some doctors love this... but I have had some say, so, you got fat...

I usually (now) let the doctor run the show and see how it goes. I have had some ask more questions of my husband (how much do I eat, drink booze, do I do drugs - as my answers would obviously be LIES! LIES I tell you...) and then offer up things as I think they will be taken well. I have been called a liar for my food diary (my career was ethics and compliance - all this hurt a lot) and so I just had to learn to bite my tongue and cry later.

There are good doctors out there. Bring things but I suggest to let the doctor take the lead so they don't feel like you went on the internet and tried to self-diagnose or listened to a crazy person on a forum. :)

Good luck and I hope it goes really well! Post after the appt!

[lindsaydf]

I swear that we will lose our minds if the endo says he's just depressed!