Resilience

It almost been two months since my last post and the medication has been working pretty well for the most part. The race at Mt. Lemmon went well. I was surprisingly disappointed in my performance after the race despite going into it with the goal of just finishing. The brain is funny sometimes. The thing I was most grateful for, however, was the time I got to spend with 6 other ladies who have become like sisters to me. I really needed that girl time! I ended up running another race on Thanksgiving Day. This is a family tradition I started about 4 years ago. I missed last year but decided to start it up again. Tahirah and Noah both joined me this time. Noah and I both ended up getting first in our age group (Noah with a 3 min PR!). Interestingly enough, it was actually my slowest 5K after my very first.

It had been 5 months since my last period. My endocrinologist thought that once my medication started working it would come back. I've also been experiencing hot flashes, weight gain, mood swings and non existent libido. I let my doctor know what was going on he had me come in. He rechecked all of my pituitary hormones again; all came back normal. He decided to get the help of my gynecologist. He also suggested we do another MRI.

I had the MRI on Monday, Dec 10th. I saw my gynecologist on Wednesday, Dec 12th. My gynecologist used an ultrasound to check my uterus and ovaries. He saw that the lining of my uterus was thin, the opposite of what would happen if you didn't not have a period for several months. There were several tiny cysts on my ovaries but nothing too concerning. His guess was that I was low on estrogen. Since my FSH and LH was normal, my ovaries were getting the signal to start my cycle but my ovaries were not responding. He told me if my estrogen blood test came back low, I could choose to take a low dose birth control pill or biodentical estrogen. I liked the idea of the biodentical estrogen best. He said the only drawback was I might get spotty periods depending on how much estrogen my body produced at any given time.

Wednesday afternoon, I wondered why I hadn't heard from my endocrinologist about my MRI results so I called after work and left a message. The MA called me the next morning and told me the doctor wanted to see me to discuss the results. She acted very funny about it. At first she gave me the option of Tuesday the next week but then said to hold. She got back on and said we don't normally do this but the doctor said you could come in today (Thursday, Dec 13th) at 11:20. I started getting worried that something was really wrong.

The first thing my endocrinologist told me was my estrogen test came back with a level of 0. I am producing no estrogen. Guess I won't have to worry about spotty periods. He also told me the reason it had taken him longer to get back to me was that he had been discussing my condition with other doctors. He said he probably called and talk to about 20 different doctors. The radiologist that looked at my MRI did not agree with the radiologist that looked at my first MRI back in August. The first radiologist had diagnosed me with lympocytic hypophysitis which is basically inflammation because my pituitary stalk was enlarged. The second MRI showed that the stalk was still enlarged. The second radiologist said that if it was lympocytic hypophysitis the inflammation should have gone down by now (4 months later). He believed I may have a tumor.

A pituitary tumor can be caused by 25 other conditions, many different autoimmune diseases and cancers. The doctor said we could do a biopsy but there was extreme risk of damaging the entire pituitary in doing so and therefore losing all function of it completely. The other option was to do a PET scan which will show inflammation or any cancer throughout my whole body. We both liked the idea of a PET scan for peace of mind. He said the problem we may run into is an approval from my insurance since I had no visible lesions on my body to indicate cancer. He said he would call my insurance personally to explain my condition and why a PET scan would be the best choice. He also took 11 vials of blood to check other possible conditions and ordered a chest x-ray as well (lung cancer is one of the possible conditions and he wants to rule out everything).

I got a call today to schedule my PET scan. She told me she had to schedule it at least 7 days out for insurance purposes. I'm not sure if that meant my insurance has approved it or if that is why it is scheduled out further to give them time to get an approval. It is scheduled for Dec 26th. (I opted not to have it done on Christmas day, which was the next available appointment after the 7 days).

I was hoping there would be no more updates to report on and I could move on from all of this. I keep trying to just stay on the surface for now and not think too deeply about things until I get some more answers. I sat pondering last night what my Heavenly Father wanted me to learn from all of this. I believe I will (hopefully) learn many things but a word suddenly came into my head during my run this morning. RESILIENCE. Things have definitely have not gone as planned. I keep trying to plan what will happen next in all of this but I keep getting surprised. I know I will always have the strength I need to meet every surprise. I keep telling myself, I will adapt. I will bounce back. I will be ok.   

Patience and Change

It's been 5 weeks since I was put on Desmopressin for my diabetes insipidus. I started with 1/2 a tablet at night. I was getting my sodium checked at least once, sometimes twice a week. My level never went to low which is always the concern with this medication. However, I wasn't getting a ton of relief from my symptoms during the day and I was still getting headaches. My doctor continued to up the dosage and told me to try and only drink when I was very thirsty. Almost two weeks ago, I went into the lab to have another check and they were having a very difficult time drawing my blood. Come to find out, I was very dehydrated and for some odd reason I was also hypoglycemic. The doctor upped my dose again and told me to drink more water which I found kind of funny. I am now on 1 pill at night, 1 in the morning and a 1/2 in the middle of the day. My last check was the on the 11th and it came back normal. So, my doctor is keeping me on that dose and will be doing another blood draw two weeks from the last one.

I was pretty much feeling the same up until the beginning of this week. Last Friday, one of my friends came over and gave me a foot zone. She did this one other time just before I was officially diagnosed. (I would recommend a foot zone to anyone!) Saturday was pretty rough and I got really down; one of the worst days I could remember as far as my mental health since this all began. Sunday was a little better. Monday I dragged myself out of bed to go on a run with my friends. It felt so good, FINALLY!! I ran again two days later and still felt just as good! I was so surprised!

I have an amazing group of ladies I consider some of my bestest friends. There are 8 of us. We are all runners and have spent a lot of time on our feet together. We share everything going on in our lives and have all been through a lot in the short two years when we all came together. A couple of them wanted to run the Mt. Lemmon marathon in Tucson, Arizona. Before we knew it, almost all of us bought plane tickets and a girls trip was born. In the beginning, my plan was to just go, have fun, and cheer for everyone else at the finish line. After my last two runs went so well, I started to get an itch to do the half marathon. I have not run much since the beginning of June. I did attempt a ten miler down part of the Huntsville, Utah marathon course the end of July but, I've mostly been running 5 milers and an occasional 6 here and there. I attempted another 10 miler this morning. It was a very hilly course. I struggled with the steep hills but overall, I felt like I didn't do too bad!

The Mt. Lemmon race is on November 3rd. I am excited not only to spend the weekend with the girls but to run this race and prove to myself I can come back from all of this. I will never be able to run another race without diabetes insipidus again. I have to find my new normal and that's ok! I don't know if the lymphocytic hypophysitis will start affecting other hormones in my body. I may have to find my new normal another time or even several more times. This year has definitely been my year to learn patience and adapt to change. I struggle a lot with both. I know I will never completely master either but I have learned a lot these past 5 months!
        

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!





    

Medical Mystery Continues

My doctor's MA called with my lab results....all normal. I don't even know what to think or where to go at this point. I still have all my symptoms but no one can figure out why. I'm rather tired of it all. I'm basically to the point to just say forget it. I would love to go for a nice long run right now if I could but, I guess I'll just settle for a good cry and maybe a nap.

Health is not valued till sickness comes - Thomas Fuller

I have not written a blog post in 6 years. I am not a writer. I don't think I am any more unique than the next person. I just kept having a nagging thought that I should start writing things down. When I first started this blog, I was a pretty new runner. I still am but I have learned a little bit more in those 6 years. I don't run in Vibram 5 fingers anymore (I still love to wear them for yard work and kayaking though!). My training plans have changed, my routes are different and you will hardly ever see me running alone anymore.

Things were really starting to look good for a nice marathon PR. I decided on Top of Utah Marathon (my first marathon!) and I had a big scary goal of 3:18, a whole hour faster than my first marathon time! Just as I was about to start my training plan, that all changed. On June 5, 2018, I met up with my running friends at the track. I felt very off. I did my best to complete the workout and tried to cool down by running back to where we parked our cars. I couldn't run. I ended up walking the mile back, dry heaving along the way. I thought I must have had some virus my body was fighting off or coming down with something. (Picture below was the beginning of it all. Can you tell by my face? I'm the one in purple.)

Suddenly, I couldn't run as far or as fast as I used to be able to. My average pace per mile was a minute to a minute and a half slower. I couldn't go more than a mile or two before I had to stop and walk. My 40+ mile weeks turned into 15, sometimes less.

I had just given blood a week prior to the track run so I then started thinking it must be my iron. I've been anemic before and my hemoglobin was right at the number it had to be to give blood when I donated. I started taking an iron supplement but it didn't seem to do anything after taking it for a week and a half.

My gynecologist lives in my neighborhood and goes to my same church. I asked him one Sunday how long it usually takes to see an improvement after taking iron after I explained what was going on. He said he would order a blood panel to see where my iron was along with some other things. My iron came back on the low end of normal (typical for me), white blood count was slightly elevated and everything else was normal. He told me to keep taking the iron along with a vitamin supplement. With the slightly elevated WBC he said I could have an infection but nothing to worry about.

The supplements were not making any difference. I was in charge of girls camp and thought it would be a good time to take a rest from running and see what happens when I get back. So, on June 18, 2018, I headed out to Heber for a week. The camp went great but it was during this time I noticed I was drinking a lot of water and having to go to the bathroom a lot, including in the middle of the night. I figured it must have been because I was outside where it's hot and when you drink a lot, you usually have to go to the bathroom a lot.

I got back home and noticed the excessive thirst and urination was not decreasing. I decided to track how much I was drinking. I was up to an average of 2 gallons a day. I would have to get up 2-3 times during the night to go and would have to drink more water before I went back to sleep. So, beginning of July, I decided to get an appointment with our family doctor.

He saw that the blood test I had taken was normal and told me the only thing he could come up with was a possibility of Central Diabetes Insipidus. It has nothing to do with your blood sugar but is a disorder that causes an imbalance of water in your body due to an inadequate output of the hormone ADH. He ordered a water osmolarity urine test to check my body's water balance and it's ability to produce and concentrate urine. The test came back abnormal with a possibility of DI.

My doctor referred me to the clinic's endocrinologist. I had heard he was one of the best. However, after looking at my labs he would not accept me and I had to go somewhere else. My doctor referred me to a new endocrinologist. My appointment was scheduled for Oct. 4th...WHAT?!? I wanted to cry. I was tired of knowing there was something wrong with my body and not getting any answers.

By the end of July, I had a new symptom, nipple discharge. Both my gynecologist and my family doctor were out of town so I called a new gynecologist so I could get a prolactin test. I explained all of my symptoms again and he took my blood to test my prolactin level. The level came back a little above normal. He told me not to worry about it and my lack of energy could still be my iron (I did not agree).

I then noticed I missed a period (I have now missed two). The only time I have ever missed a period was because I was pregnant or nursing. I had been researching like crazy on the internet and everything pointed to a problem with my pituitary. I started texting a friend who has gone through some crazy things with her daughter's health and I had similar symptoms. She told me I needed to get a doctor to request an MRI asap! I felt silly to keep calling the doctor but I finally called and left a message with my family doctor's medical assistant. I just said I'm still having all of these symptoms and listed them off and asked if there was anything else they could do since my endocrinologist appointment was so far out. I got a call back soon after from his MA telling me the doctor was sending in an order for an MRI.

I had my MRI on August 14, 2018. It was discovered that my pituitary stalk was enlarged (4.7mm - normal is 3mm) and there was an absence of the normal pituitary bright spot (indicating there was no storage of the ADH hormone). The radiologist suggested possibly doing a lumbar puncture. It was at this time I started to get depressed. I had never been depressed before. I just wanted to stay in bed all day.

While waiting for the hospital to call me with an appointment for my lumbar puncture, I got a call instead from the endocrinologist my doctor had originally wanted to send me to. They had an appointment for me in two days on August 22, 2018. Apparently, after getting my MRI back and adding up all of the symptoms, my doctor decided to call the endocrinologist back and talk to him about me. He said, ok, I'll take her! I was beyond thrilled to know I was finally on the path to getting answers!

My appointment with the endocrinologist was fantastic. He listened to me talk about the history of everything that was going on. He then explained to me what was possibly going on, what he wanted to test for and why. He even drew out a diagram on a piece of paper. I wanted to hug him!!

He tested for diabetes insipidus with another urine test along with a blood test. If the urine is highly diluted and the blood is highly concentrated this will indicate DI. This test doesn't always work. If that's the case, I will have to do a water deprivation test which just sounds really awful.

A person can get diabetes insipidus without a known cause. However, with my additional symptoms of nipple discharge, amenorrhea (absence of menstruation), and fatigue, the anterior pituitary could also be affected where all the hormones are produced. This may suggest I have something called Lymphocytic Hypophysitis. This is a rare autoimmune disease. My doctor said it is usually a sudden onset and the body just starts attacking the pituitary. So he is also testing all of the hormones produced by the pituitary.

Diabetes insipidus can also be caused by Lymphoma and Melanoma. I haven't been losing weight, which is a good sign, but he is still testing for Lymphoma.

They took all the many vials of blood last Thursday, August 23. They got my cortisol level back on Friday. It was normal (yay!). I should hear back on the rest sometime this week.

I am trying to just take this one day at a time. Running is hard; like the last mile of a marathon everytime I run hard. But I'm hopeful I will still be able to run and maybe even get up to where I was before, but I don't know. I never thought I took my health for granted. I knew I was blessed with a very healthy body that could run and do so much. I thanked my Heavenly Father for it daily. I am one that very rarely gets sick. I have never had surgery. I have only been in the hospital to have my babies. I have never taken prescription medications except for a little infection here or there. I don't even take over the counter medications unless I REALLY have to. This is different for me. I have found that maybe I did take my health for granted. How can you not? Your body is incredible and does countless things without any thought from you. We just assume it will just keep doing what it's supposed to... until it doesn't. Now I'm thanking my Heavenly Father for medical technology and making it possible for me to get into a doctor that can help me. Just over here rewriting my story again. The only thing we can count on in life is change.