Miscommunication

My Dr's medical assistant called last week and told me all of my test results came back normal. I asked specifically if the test for diabetes insipidus was also normal. She told me yes. I then asked if I was still coming in for my followup appointment on September 12th. She told me she wasn't sure and that she would get back to me on Tuesday, the 4th. I hung up the phone and cried. It sounds strange. Why would "normal" be bad news? I knew there was still something wrong with me. Hearing all the tests were normal meant nobody knew what that something was.

The medical assistant called me back Tuesday and told me the doctor wanted to see me again but he wanted to move up my appointment so he could discuss some things including another test. I wasn't sure what that meant but I was happy to hear I didn't have to wait too long to find out.

My appointment was yesterday. I found out there was a little miscommunication between the doctor and the MA. A urine test and a blood test was done to test for diabetes insipidus. The urine test indicated a possibility of DI. However, in order to have it confirmed the blood test had to come back with a level above 300. Mine came back at 296. So the MA thought the test was normal. In reality, this just meant the diagnosis could not be confirmed and I would need to do a water deprivation test. Doesn't that sound like fun?

My water deprivation test is scheduled for Tuesday, Sept 11. Right now I get up two or three times a night to go to the bathroom. Before I go back to sleep, I also have to drink some water because I am so thirsty. On the day of the test, I will have to stop drinking any fluid after 6am. Any urine output after this time will have to be measured and recorded. The office opens at 8am. I will go in and sit in a room. They will take my blood and weigh me every hour. Diabetes insipidus is confirmed once one of three things happens, I lose 3% of my body weight (this includes urine output which is why I have to measure it after I stop drinking), the level of my blood concentration goes above 300, or I start having symptoms of dehydration. He is guessing this will happen in four hours or less. The treatment for diabetes insipidus is a synthetic form of the antidiuretic hormone (ADH). It comes in a pill, nasal spray or injection.

The other hormone levels he tested were normal. He still believes I have Lymphocytic Hypophysitis. I have learned more about this condition and it does make sense. It is a condition that causes the pituitary to become infiltrated by lymphocytes which is why my pituitary stalk is enlarged (not a tumor). Lymphocytic Hypophysitis can affect any or even all of the hormones the pituitary controls. So far, the only hormone it seems to be affecting is my ADH. My doctor said the reason I am having all the other symptoms is that diabetes insipidus puts a lot of stress on the body. Lymphocytic Hypophysitis can also produce prolactin but it appears my prolactin level has gone down (thank goodness!).

Last night I went to bed earlier than usual and I think it threw off my hydration schedule. I woke up in the night as usual. However, when I got up to start my day I literally could not walk in a straight line. It was quite scary. I quickly drank some more water and shortly after I was mostly back to normal. This makes me a little nervous for my water deprivation test because I won't be able to drink if that happens. I am happy to be on the road to a diagnosis though. If this is it, the treatment doesn't sound too terrible either. Wish me luck!