I’m not exactly sure when my journey with Hashimoto’s Encephalopathy began because so many events seemed to happen one after another starting around the end of 2011 to the beginning of 2012. I was under a lot of stress at work and at home, but when my workplace started replacing the carpet in the building seemed to be the trigger. I was sensitive to the adhesive, and my body started rebelling. I couldn’t work from home, so I was exposed repeatedly (I worked for the state in a huge office building).
I remember feeling weird, kind of fuzzy, heart racing, fatigued easily (walking to the bathroom was exhausting), my face would get hot and flushed, my eyes would go wonky, I couldn’t concentrate, and I felt as though I was a passenger looking through someone else’s eyes. I had no control over my emotions and would cry a lot, sometimes laugh and cry at the same time. At some point I went to the ER and was diagnosed with Graves’ disease. I was having a thyroid storm and had to have my thyroid "killed". I was put on prednisone prior to the procedure to help prevent damage to my eyes from Graves’ disease. I noticed feeling so much better on steroids and brought it up to my other doctors. They said that was how most people feel on them and no other discussion was had about that until much later.
I went back to work a few weeks later and much to my dismay; all the same symptoms came back plus more. My tachycardia didn’t go away after the thyroid storm, and I was taken off my medication for narcolepsy with cataplexy (diagnosed in 1997). Because I couldn’t stay awake, was having the same symptoms as before, was taking a very long time to solve even simple math problems (I worked at the Dept of Revenue), I had to stop working.
I stayed at home and slept a lot. I was very emotional and began to be paranoid about everything (this may have started much sooner). I was afraid to answer the phone, afraid to open mail, got anxious around groups of people, even friends and family. I remember I felt almost drunk a lot of the time. I started getting hives that would travel to different parts of my body. I was put on prednisone to help calm the hives. I again started improving and feeling so much better. I was eventually diagnosed with Hashimoto’s Encephalopathy (HE) in 2012 by my amazing primary care physician and my neurologist agreed. I was put on a high dose of oral prednisone and began to improve dramatically.
I did a lot of Googling around that time and there wasn’t much info about HE at that time. I ended up finding a Facebook group with others who were also looking for answers about HE. That is when I met Susan Foley & Nicola Nelson. They co-founded HESA (Hashimoto’s Encephalopathy SREAT Alliance), the nonprofit I now volunteer for.
After a time, I developed type 2 diabetes from the steroids and had to wean off quickly. My symptoms quickly returned. I was put back on a lower dose and weaned off over a couple of years very slowly. I am feeling a lot better than I was then, but not well enough to work. I cannot say if I am remembering all of this in perfect sequence, and I know most of 2012 to 2013 is a blur. I remember little of my life from that time, only bits and pieces. I applied for disability, but for whatever reason, was denied. I was also denied after appeal, and after a hearing before the judge. Because the process took so long, and since I was not able to go back to work, I am no longer eligible to apply for social security disability. Because of the lost income, we lost our home.
Things are getting much better now. I am still unable to work, but I have found so much joy in places I never really thought to look. My husband is my rock. He stood by me and I know I didn’t make it easy for him. He helped me find myself again and is so understanding of my limitations. I think being a caregiver to someone with a chronic illness must be the toughest job on the planet. Often, we don’t give them the recognition they deserve. So, let’s give a huge shout out to all the caregivers! Our heroes! Finding a hobby has helped a lot. Photography has been my salvation. It gives me something to be excited about, gets me outside and walking around much more than I would otherwise. My dog has also helped so much. He is my companion when I am alone. He makes me get up to take him outside and to play. He comforts me when I am feeling sad or when my symptoms start flaring again. I don’t know what I would have done without him!
HESA and the Facebook support groups have helped me so much! I have made so many friends. People who understand what I am going through and what it took to get me where I am today. Working as a volunteer and helping, even in a small way, to spread awareness and educate the public and medical professionals about HE so others don’t have to wait so long for a diagnosis and for treatment is so rewarding. I feel now that I still have a purpose, and that is huge! I even got to help those at HESA write a book (Understanding Hashimoto’s Encephalopathy) and help plan and attend a remarkably successful symposium in New York (Hashimoto’s Encephalopathy - The Bridge Between Neurology & Psychology). I have hope that soon, the medical community will find the antibody needed to quickly diagnose and treat HE…maybe even cure it.
by Lisa Foley