I thought that the "Golden Years" were supposed to be fun!
I understand.
My endo is 365 miles away, about 6 hours. I do have a local endo who is about 20 minutes away, but as much as she is at least not mean to me, I cannot trust her with my life. I see her only so that someone local knows my story in the case that an ambulance comes to my house and they can call her but I want the other endo calling the shots. The police have his number (and a key to my house in case of emergency) and I wear a medic alert bracelet.
Travel, when it means your health, is now part of my life. It is not fun but I have to do it. Many of my friends do it.
With an endo so uncooperative, that is a clue that she is just not going to help ever.
It sounds like a terrible time. I wish that it had turned out better for you, but now you have all of this information for others. I don't think that I'm strong enough for all of that. We live in a very rural area, and my current endo is 90 miles away. Her office staff is not helpful at all. She wanted me to see a neurologist, but wouldn't refer me. Her office says that she doesn't "refer out" whatever that means. Her office people have told me that: specialists can't refer to specialists, it's illegal for a specialist to refer, if they referred my insurance wouldn't pay, only a primary physician can refer. I know that none of this is true. I even called my insurance company to check. She just doesn't want the bother I guess. I had to get a referral to see her though. The neurologist that she wants me to see also requires a referral, so I have been unable to get an appointment so far. Meanwhile, I am getting sicker. I won't leave the house because I look so bad. So much for the holiday celebrations! I am going to go see my primary physician tomorrow to see what he thinks I should do.
Susan
I know a lot of my friends that have had complex endo issues do have to hunt around and get diagnosed with a lot of things - some of them are accurate and some of them are not. I for one had a lot of the things they diagnosed me with but I also had other things so the treatments did not work which made the picture foggy to say the least and the doctors would give up and that I did not understand. Clearly I was ill but they would just tell me to come back later (that, by the way, never helped).
I once had a doctor tell me that hormones do not cycle! I looked at him and said but, what about the period? He reacted like I was a child talking back and I was booted from the office. In a way it was good. I then walked out, had a good cry in the parking lot, and resolved to trust myself, not some idiot that was trying to tell me something that is true was not, and learn all I could and go to a doctor that I had heard about that was across the country. My husband supported it and we went. Sure, I get grief now that I could not get help in a nearby metropolitan area but I did try for years and years. It was not until I had pathology in my hands that now I can get help. Sad.
Thank you so much. I've just had a terrible night with my heart racing all over. I almost went to the emergency room. You have given me a lot of hope. Maybe I'm not nuts after all! If I don't get this taken care of pretty soon, I'm going to get some really big tweezers and do it myself! Seriously, I have sent a letter with my MRI and lab reports to the Stanford doctor that saw me when they thought that I had a pheo. He is a neuroendocrinologist. If he will just read my letter and reports, I may have help. Thank you again for your info. and support.
Susan
Ok - so you ran into two incompetent endos so far... not bad! I had to go through 10 before I got help.
Let me answer some questions.
First, a pituitary tumor of ANY size can cause issues so if a doc says yours is too small, that doctor has absolutely no idea what they are doing!
Second, the dexamethosone suppressone tests are NOT tests of exclusion - so the docs that say they are normal, figure you are not sick and quit testing again have no idea what they are doing!
Third - a good endo could tell you that your growth hormone is low because your cortisol is high... that is a pretty typical thing to happen. Hello! Flashing lights should be going off but no, again, a hint that the doctor has not a clue.
All the heart issues etc - all the is the cortisol. I bet you have low vitamin D and ferratin too. Your thyroid may be all nuts as well.
You need an expert in Cushing's syndrome. Get copies all your tests yourself, keep them and read them all.
A neurologist is not going to help you. You nee a neuro-endocrinologist! A neuro-opthomologist. You need help. A pituitary center.
I had cyclical cushing's and my tests were all over the place. I also had a lot of other problems as a result of the Cushing's. I even had a prolactinoma too - which just made my diagnosis harder because no one expected me to have two pit tumors (hah!).