Nothing Stops You!

I've had three appointments with 3 different doctors this past week. I first met with my neurosurgeon's resident. He reiterated that the surgery went well and asked how things were going with my recovery now that I’m a month out. I stated I was doing well for the most part. My headaches are MUCH better and I was hopful I could start exercising again. I asked him if I could run now. His response was yes, you won't hurt anything but it's not going to feel good. I'll take it!! And boy, was he right. 

My next appointment was with my rhematologist. I met with her just before Christmas. Lymphocytic Hypophysitis (LH) is usually a secondary disorder. She took 14 vials of blood and ordered an x-ray to rule out any other autoimmune diseases. The ANA test did come back positive. This is the primary test they use to detect autoimmune diseases. However, I do not have any symptoms of another autoimmune disease. So, we both agreeded it doesn't make sense to treat "the test" and not me. Since I did test positive, she said she wants to keep me on her radar and test again in one year, unless I do start have symptoms. Lupus is the most likely but because I presented with LH first, it is extremly unlikely it will ever present itself later but, it is possible. Since Lymphocytic Hypophysitis attacks the pituitary, it is managed by an endocrinologist not a rheumatologist. 

My third appointment was with my endocrinologist. This man is incredible! I have never met a doctor like him. After my surgery, my hormones starting going a little haywire. My cortisol went down in the hospital and that’s when they put me on hydrocortisone. My endocrinologist tested my thyroid two weeks after my surgery and found all three thyroid tests (T3, T4, and TSH) were super low. His theory is that the surgery put my pituitary in shock and it’s trying to figure things out again. He had me go in a week later to test thyroid, ACTH, and sodium again and two weeks later to test a third time. Sodium has been fine but my thyroid and ACTH have continued to be low. Keep in mind while these were being tested my endocrinologist was away on vacation for Christmas. He called me TWICE while on vacation to talk to me about my test results - incredible I tell you!

I finally met with him in person yesterday. He sat and talked with me for a HALF HOUR explaining everything and making sure I understood. He still thinks my pituitary is in shock and is still trying to figure things out so he is holding out on thyroid treatment. The plan right now is to test everything again Saturday morning after skipping my Friday afternoon dose of hydrocortisone to make sure the cortisol test is accurate. If the thyroid is still low, we’ll talk about treatment. We’ll continue to monitor my cortisol and HOPEFULLY start weaning off the hydrocortisone. I had been thinking the hydrocortisone was also to treat the LH so I was happy to hear that. We will then continue to monitor everything through blood tests and MRIs probably for the rest of my life. He informed me that even if some of my hormones come back, I could loose them again later. I guess that makes sense being an autoimmune disease. He also explained why he pushed for a pet scan so much. Apparently 50% of patients with LH have melanoma somewhere in their body. It frequently does not show up in blood tests, spinal taps and sometimes even pet scans. Crazy! I’m just going to choose not to focus on that and cross that bridge if it comes.

I have continued to gain weight which had been one of the most frustrating things to me. I feel like I’m in somebody else’s body. I asked my endocrinologist about this and he said well, you’ve got a few things working against you, hypothyroidism, steroid and your activity level is lower than usual. Basically, I’m not going to loose weight right now. He then asked me if I’ve been able to run. I told him I’m trying and ran 5 miles that day (with walking). He then said to me “Nothing stops you”. That has really stuck with me. This is the thought I’m going to choose to believe right now. Running has been so hard but, “nothing stops you”. I could get hormones back and loose them again but, “nothing stops you”. Life is going to just keep happening but, “nothing stops you”. There are definitely going to be days when I will have a hard time believing this but I’m going to try. NOTHING IS GOING TO STOP ME!