2020 May Not Be That Bad After All!

I think we can all agree 2020 has not been the greatest. However, 2020 could be the year I get completely off my steroid.... maybe! I had blood labs done last week and got the results today. My ACTH (which stimulates cortisol production) level was 22!!! AND my cortisol level was a 3!!! I see my doctor again in 6 weeks and if my cortisol keeps coming up, I could possibly come completely off my hydrocortisone!! Best news I've heard all year! 

Goodbyes are hard

As I mentioned before, I tried to start where I first began with running with the Couch to 5k program. Yesterday I would have completed 6 weeks of the program. I got to the point I ran 20 minutes straight with no walking. Every minute was excruciating. My heart rate would be way over the "target heart rate" zone and it would not go back to normal several hours after running. My doctor had me try taking an extra pill I take to replace my cortisol. It didn't make much of a difference. He then thought it was dehydration because of my diabetes insipidus. It got to the point I thought, what am I doing? I'm not even enjoying this. I'm pretty stubborn, and when you tell me I can't do something I do everything I can to prove you wrong. And that's what I was doing. But this was not healthy. My body was trying to tell me to stop but I kept telling it to be quiet. So, as of yesterday, I finally listened. I officially decided to say goodbye to one of my greatest loves in life, running. Tears are actually falling down my face as I'm writing this. This may seem silly to some but running has been a huge part of my life for over 10 years now. It's saying goodbye to more than just the pounding of my feet upon the pavement. Running took me places around the country I wouldn't have otherwise traveled. Seeing a new place while running is completely different than any other mode of transportation. Running taught me I could do hard things and push my body beyond my wildest dreams. Most of my dearest friends I have made as an adult were because of running. I got therapy sessions at least 3 times a week with these friends. Of course, I'll still see them but it's definitely not the same and it will probably sting for a long time whenever running it brought up as a topic for conversation. Running defined who I was. It is usually the very first thing most people asked me about when they saw me. I was the RUNNER. I ran marathons, not only that, I ran the BOSTON MARATHON. Running made me special. My family room in the basement is decorated with a rack of 32 medals. Above it are even more running bibs. Running mugs are meticulously placed on the window sill. Heck, I made a BLOG about running. So, now what?? I don't know. I have found I can still lift weights, walk, and do water aerobics. I still want to be fit. I still want to be strong. But most of all I still want to be healthy.   

Happy News!

I got a call from my endocrinologist's MA (turned friend 😉) yesterday with very happy news. My ACTH level from my blood test that was done almost a month ago was an 8!! Since my surgery my levels have been 2-4. For those of you who don't know what your ACTH (Adrenocorticotropic hormone) does like I didn't two years ago, one of its jobs is to simulate your cortisol hormone. My current cortisol level is 0 without my hydrocortisone pills. My doctor has said I will most likely be on hydrocortisone for the rest of my life but if I can lower the dosage, that would be so awesome!

In other happy news, my exercise plan has been going well. I just finished up my 3rd week of the Couch to 5K program and have successfully done 3 days of strength training for 3 weeks as well! I'm losing weight very slowly (because of my crazy hormones) but I'm feeling success in other ways. Just being able to move my body again is a huge success.

The New, and Even Better me!

I just finished my first day of the Couch to 5K program (C25K). This is how I got into running many eons ago when my friends, Victoria and Emily, coerced me into training for a 5K with them. It got me hooked and I ended up running many more 5K to full marathon races (including my favorite, the Boston Marathon). I even ran two full marathons (Boston and Salt Lake) 5 days apart. Running used to be a huge part of my life. This past June 5th marked 2 years since the first day I woke up and knew something was not right. Since then, I have tried over and over to keep running apart of my life.  These past 6 months since my surgery have been the most difficult to keep it going. I've felt like I lost friends and even a part of me. It's been hard. As I said in my last post, I decided to mix up my exercise with no pressure this past month. It's been so great and much needed! However, I still missed running. I decided to give it one last go with C25K and have told myself if it really is time to let it go, I'm ready to work on that. It was an interesting feeling after finishing those 30 mins today and going back to where I started. It felt like I was starting over but as a new, even better version of me!

UPDATES:

Doctor -

I saw my OB/GYN on the 12th because I had a menstrual period at the beginning of the month. I don't produce my own estrogen and progesterone and I'm taking the replacement hormones every day and shouldn't have a period. He did an ultrasound and found my uterine lining is too thick which indicates I've got too much estrogen. He had me do a blood test to confirm. I saw my endocrinologist yesterday. He had me do blood labs last week. My growth hormone is still increasing so that's great news. My cortisol and thyroid still haven't kicked in but the replacement medication is doing its job. He hadn't received the ACTH so I don't know about that yet. My testosterone was at a 4 which could explain the extreme fatigue AND possibly my difficulty with running. I am already on a DHEA supplement but he is increasing it to the max you can take and if that doesn't work then we'll have to talk about testosterone cream. I'm really hoping the DHEA does the job. I will restest the testosterone in 6 weeks. As far as my estrogen, he said we can't test it with a blood test since I don't have a fully functioning pituitary. So, he told me to decrease the amount of estrogen I'm taking and go back to the OB/GYN. 

I asked him about what things look like long term now with my disorder. I will have blood work and see him every six months. I will have an MRI every year until I have a few in a row that look exactly the same and then they could be spaced out further. Of course, this could change if anything comes up in the meantime.

Noom-

I mentioned I starting using an app called Noom to help lose weight. I love it! I've lost about 8 lbs. I'm still fighting against all my hormone chaos so I haven't lost weight very fast but it's the only thing that I've been able to lose any weight at all doing. It has already started changing my relationship with food for the better. I love the psychological aspect of it. I think that is such a huge part of everything!

Corona 50? Not exactly.

Wow, it's been a while and with Corona it feels like even longer. MRI was done and reviewed by my Neurosurgeon. There was inflammation in different areas but he said it looked like they would expect it to this far out from my surgery. I will do another MRI check in a year. That was good to hear! My thyroid is back to "normal" with the help of medication. My ACTH is still low which in turn does not signal my body to make any cortisol. (Boo!) My growth hormone is still showing up as normal.

I have gained 50 lbs since this whole health journey began and THIRTY of those were since my surgery! It has been a real struggle, physically, mentally, and even economically (have to keep buying clothes when I need to go out in public). Also, when you used to be a runner, you have a lot of runner friends and most runners are pretty slender. I am literally the fattest one of the group I used to run with. It has made me so self-conscious. I feel like I have to somehow let people know that I'm the size I am because my hormones have gone wacko and not because I'm lazy or eat all the time. I hate eating anything in front of others other than a salad or something everyone has deemed "healthy". If I ate a cookie they might think "oh, THAT'S why she gained so much weight". So dumb, I know. I don't think many people intentionally think these things. To be honest, I've done it myself in the past. Going through this has given me a whole different perspective. What you see on the outside of a person does not tell you anything. Everyone has a story. Be kind.

Let's go back to running. Obviously, the marathon got canceled and I really lost my motivation to keep running. So many things have changed and I really don't find the joy in running that I once did. I do run a little here and there but I've started trying something different. I have committed to getting one hour of exercise in a day that can be anything. I walk, I run/walk, I hike, I bike, I lift. I'm really liking it. No pressure, no monotony, it's great. I'm also trying a new app called Noom that I also really like. It gives me some accountability and it also helps strengthen the mental part of it all which is so huge. Something unusual it has you do is weigh yourself every day. At first, I thought that was crazy. That it would make me a slave to the scale but it's done the opposite. It's helped me really recognize that weight goes up and down all the time and it's become routine which takes out the scale anxiety.

So what's next? My next appointment with my endocrinologist is June 22nd and we'll see what is going on with my hormones then. I'll let you know.

Good News/Not So Good News

The results of my blood tests came back. Here's the good news:

-Growth Hormone is back to normal!!
-Muscle test is back to normal!
-Thyroid level is still low but better

Now for the not so good news:

-Cortisol is still non-existent
-ACTH is still low
-Prolactin is high (more than double of normal)

The high prolactin was the most concerning to my doctor and doesn't make sense. So, he suggested we move up the MRI and have that done now instead of in June/July. He wants to get a look at the pituitary gland and especially the stalk to see if it has been affected. I agreed and have the MRI  scheduled for next Tuesday, March 3rd.

Now for some more good news, I've been running! AND, I have a new running buddy! She is actually my doctor's medical assistant. Kind of a weird connection but it was definitely meant to be. We were both very into running before and are both trying to come back again. She is the sweetest ever and offered to train and run the marathon with me in June. 💗 (Love you Meagan!)

Finding Joy

I put off writing this post for quite some time. It's been a roller coaster of emotions with more downs than ups. I wanted to write the post while I was up but could never stay up long enough to write it. I then decided to be real. Some people will comment that I have so much strength and I am always so positive. Guess what? Sometimes, I'm not strong and I can be pretty negative. I cry, I swear, and I scream. I start getting upset about unrelated things around me because I'm frustrated over the whole thing (just ask my family). I know it doesn't help and I know there are people in A LOT worse situations but sometimes that's just what happens.

I have really struggled these past couple of weeks. I am now deficient in the rest of my pituitary hormones. The deficiency of my thyroid hormone has also caused myopathy and shortness of breath. My doctor was holding off on putting me on thyroid medication hoping that it would come back up but we have waited long enough. I have not noticed any difference with the thyroid medication but my doctor said it would take some time finding the right dose.

My doctor told me we would start to wean off the steroid (hydrocortisone) as soon as possible but it's not looking like that is going to be anytime soon. Body image now has become a huge issue for me. Not something I ever thought would happen. I literally cry most days when I look in the mirror as I'm getting ready. And then I feel shame for crying over the outward appearance of my body. It quickly turns into a downward spiral. My husband suggested we go an buy some clothes that fit my body better but I'm terrified it will just make things worse. So, I keep stuffing myself in my current clothes and continue to feel gross. So, obviously, self-love and appreciation for my body, no matter the size,  is something I need to work on.

I belong to a small group of people with lymphocytic hypophysitis on Facebook. They are a very supportive group. Something that I have noticed is many of them lost more or all of their hormones after their biopsy surgery and they have never returned, even after several years. As far as I know, my doctor still believes my hormones will return but I'm also trying to come to grips with the reality that they may not. I recently read a quote that says:

"Sometimes you have to let go of the picture of what you thought it would be like, and learn to find joy in the story you are actually living." - Unknown

I keep waiting for that "light at the end of the tunnel". Now I'm realizing, there may be no "end". This may be it and I have decided to try and find joy in my story that I'm living NOW. As you can see, that's not happening right now and it might not even begin to start for a while. It will also always be an ongoing process and never something I can just check off my checklist. So, there's something else I'm going to work on.

I also have another goal I want to share. I signed up for the Utah Valley Marathon more than a year ago. I was supposed to run it last year but deferred it to this year because of my health at that time. So, this race has been on the calendar for far too long. Right now, it is difficult for me to exercise but I'm doing it the best I can. For me, finishing this race would mean this disease that has been plaguing my body did not win. So, that's the goal. I am going to run/walk/crawl and finish the Utah Valley Marathon on June 6th! Training starts next week. It's not going to be easy so keep me going friends!




 

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!