I was cordial in the office visit. I told her my history. I even went along with her theories that I was autoimmune thyroid and could possibly come off my prednisone. I followed her course of action. I didn't badger the office or the staff. My messages were polite and included all the information they require (birth date, spelling of the first and last name, phone number). Hospital administration looked in to all this to see that my claims were valid. They agreed. But still this continues.
She's not on vacation any time this month. Hospital administration made sure of that so that I wouldn't expect a reply while she's out. She's been in the office all this week. There's no excuse why this would take this long.
I can't prove it, but I'm pretty sure the doctor either doesn't like me personally or doesn't like my case. Doesn't really matter. People put off what they don't want to deal with. I'm being put off. Once is a fluke. Twice is a coincidence. Three times is a pattern.
I can't make her want to work with me. I can't force her to do her job. That's only going to increase her resentment towards me, which is the last thing I need. There's really only one option.
Vote with my feet.
I'll wait to hear from hospital administration, then ask if they can find me someone who would actually look forward to working with me and can handle the rare pituitary aspect. I'm not holding my breath on that one. I've also had the experience where one bad encounter with one doctor can spoil the whole network for me. I'll also put a call into my old neuroendocrinologist and ask them if there's anyone, besides her, they can recommend in my area.
I hate this part: starting over.
Ugh! What is wrong with this picture. My heart is just breaking for you right now. Why would this doctor take you on and not want to really fulfill her part? I just don't understand why a doctor would only want patients that fit into a nice little square when in fact you may very well be a circle. Yes, unfortunately you may have to vote with your feet. I am not familiar with your particular health issue but could you possible "train" a non professional in your specific needs. What I am trying to say is could you possible use an endocronologist who is willing to learn about your illness and work with you? I will admit thought that my personal experiences with endocronologists has not been top of the line for most. I have found them to be very narrowed minded overall and can only hope that you have had better experiences with them. I had thryoid cancers and now have no thyroid to speak of. They tend (in my experience) to treat from test results on thyroid meds rather then how one feels. In my book that doesn't fly to well as I am the one living with the physical reprocusions of their decisions. Sending out positive thoughts that this will somehow work out for you. And my last suggestion is could you possible keep the old doctor. I am not sure how far away this old doctor lives and this would depend on just how much followup one would need but maybe it might work. Could this doctor work through say your gp to order the requested blood tests etc. (or maybe even an endocronologist) and have a copy of the tests sent to the old doctor. And if a physical visit is only necessary say once a year to renew prescriptions....maybe you could get back there somehow. I did this for a long time with Sloan Kettering in NY who I eventually migrated to for the care of my thyroid cancer as I was so frightened by the lack of thyroid cancer knowledge by NJ endocronologists. Just a thought. I hate when we get so boxed in with choices or rather lack of medical choices.
ReplyDeleteI'm looking to be part of an experimental treatment that has only been used on 5 people. There is no clinical trial. there aren't enough of us with this disease to *have* a clinical trial. But it would mean a cure. http://makethislookawesome.blogspot.com/2011/07/can-azathioprine-fix-me.html
ReplyDeleteThere's a center for Autoimmune Hypophysitis at Johns Hopkins and beyond that, I have no clue. Neuroendocrinologists specialize in the pituitary, so that's who I assumed I should see for my pituitary disease. Endocrinologists generally shrug their shoulders and say, "that's beyond my expertise."
I *wish* she were following the test results. Then she would see that my claims are valid. Right now she's working off some imagined scenario in her head and the blood work doesn't support her claims.
The old neuroendo is about 1,300 miles away. Bit of a commute. :(