Meds!

It has been 15 weeks or 105 days since this all began (but who’s counting?) Today, I got the call I have been waiting for. “Your lab results are consistent with the diagnosis of diabetes insipidus. Which pharmacy should we send the prescription?”  I am very well aware there are many people who live with an illness nobody can explain or help or even those illnesses that can be explained but not helped. I have more compassion and empathy for those people than I ever did before. I am also aware this is not over. I have not even taken the first tablet yet. I will still have to see how my body reacts. I will have to see what dosage will work for my body. I will have to see if my period comes back. Hormone checks and MRI scans will still happen routinely. I will have to listen to my body and determine if I can go back to my crazy running hobby and other activities as before. However, despite all of that, the relief I feel of having something in my possession that can potentially make my life as it was before is incredible.

I will be starting with a 1/2 tablet of DDAVP (Desmopressin) right before bed. I will have my first sodium check on Wednesday. If my symptoms continue, we up the dosage. If my sodium level goes too low, we lower the dosage. Simple. Hope it stays that way.

The Torture Test

Last Tuesday, September 11th I had my water deprivation test. The doctor told me to stop drinking (or eating) at 6am. I was also told to measure any urine output after that time (450 cc). I arrived at the doctor's office at 8am when they opened. I felt a little lightheaded and nauseous at this time. They took my blood and a urine sample right away along with my weight. They told me I needed to wait to go to the bathroom on the hour and they would also weigh me at that time. They would take my blood every 2 hours to check my sodium level. If it got above 145, they would stop the test. The first blood test came in at 143 with only being without water for 2 hours. The test would also stop if I lost 3% of my body weight (about 4 lbs). Each liter of water is about 1 pound. My urine output was a liter or more at 9am and again at 10am and still highly diluted (almost no color). At 10am they took two blood samples (one to test sodium and the other to check the concentration), and a urine sample to check the osmolality. At that point they stopped the test. He quickly gave me a water bottle which I downed in seconds (I ended up drinking 40 oz of water before I even left his office). My doctor told me in medical school they tell them this is basically a torture test for someone who has DI. I was in agreement. It almost felt inhumane. I felt lucky I only had to do it for 4 hours. I know someone with DI who had to do it for 10!!  
After the test, my doctor said they had to wait for the blood and urine tests to come back to confirm diagnosis. He told me he does believe I have diabetes insipidus but he cannot medicate me until those tests come back. I was expecting to hear by Thursday or Friday but no such luck. I'm crossing fingers I will hear tomorrow for sure!        

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!