help

I have had such a long terrible time trying to get help.  My primary doctor referred me to an endocrinologist because of high cortisol levels found in a blood test. (Spring 2006)  The endo. treated me for pituitary problems by prescribing Genotropin injections, and turning me over to his PA.  The injections didn't help.  The PA tested me for a pheo, and when the tests came back positive, the endo. referred me to a specialist at Stanford.  The Stanford specialist said that one of my prescriptions would skew the test results, and to go home (8 hrs. away), wait a month without the prescription or the injections, and then retest.  Meanwhile, he wanted my heart evaluated.  My heart was monitored and showed "multiple arrthymias".  I was referred to a cardio electrophysiologist who found nothing wrong with my heart (many tests).  He said that something was making my heart mess up. He recommended a new endo. Meanwhile, the re-testing showed no pheo.  At this point I had no appointment, no monitoring, and a whole slew of symptoms including these arrthymias and blood pressure spikes.  I made an appointment with my endo., and he had said that he would talk to the cardiologist and they would formulate a plan.  When I saw the cardiologist, he had not heard from the endo., and had recieved no files.  I decided to change to the endo. that the cardio recommended.  I went back to my primary physician and got a referral.  The new endo. immediately tested me for Cushing's which had not been done before.  I went home and did my research and saw that I have most of the symptoms for Cushing's. The testing showed a very low supression (.9) on the low-dose dexamethasone suppression test, and the MRI showed a 3mm microadenoma and some deformity to my pituitary.  The new endo. said that a tumor that small could not be causing my symptoms, that my Dex. Suppression test results were normal, and now she wants me to see a neurologist.  Meanwhile...I still have to take the daily injections of Genotropin. I don't understand.  Why do I have such a pituitary problem that I need to take the Genotropin injections and there is visual evidence of pituitary problems, but the tumor can't be it.  I don't understand the Dex. Sup. test results.being "normal".  Can cortisol levels fluctuate and not show up sometimes?  Please help.  

[rumpled]

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!).

[couso]

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

[rumpled]

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.

[couso]

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

[rumpled]

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.

[couso]

I thought that the "Golden Years" were supposed to be fun!