Hashi-what??

I was reading this post on a friend's Facebook page regarding her new Grave's disease diagnosis. An Open Letter It is an open letter for those who don't understand the disease and the serious effects that thyroid issues can wreak on a patient's life. I sat and cried while I was reading because I could recognize many of those problems in my own health. I don't have Grave's disease, but I do have a very similar auto-immune disease called Hashimoto's Thyroiditis or chronic lymphocytic thyroiditis. The biggest difference between the two is that Grave's disease sufferers generally have to deal with more fluctuation between hypo- and hyperthyroid activity. For some, Hashimoto's can cause the back and forth swings as well, but most deal with a severely under active or completely inactive thyroid. I thought this would be an ideal opportunity to explain what it's like to live with my condition, anyone can google "thyroid diseases" and get some great clinical information, but there isn't nearly as much out there about the day to day that some of us deal with.

 I was diagnosed with Hashimoto's about 8 weeks after I delivered Isabella. I was lucky to have a great OB/GYN who recognized my energy (new mommies don't have energy), hot flashes, and swollen neck as indicators of thyroid over activity and got me in to an endocrinologist ASAP.  Because I was breast feeding I refused the iodine reuptake test, and instead went with a "watch and see" approach. The endocrinologist explained that it was most likely Hashimoto's and that I would have to 'run through' the stored thyroid hormone in my body before the hypo- symptoms started. He said that during my pregnancy I had developed this autoimmune disease that I would have to deal with for the rest of my life. My body turned on me, attacked me, destroyed a vital organ, and would never function properly again. I would have to take pills for the rest of my life to keep my body functioning: to control some of the most basic biological processes. Your thyroid controls your metabolism, your ability to regulate heat, your sensitivity to other hormones can be altered, in some cases an untreated hypo-thyroid condition can cause coma or even death.

For several more weeks my thyroid hormone levels were elevated. I was burning! I do not look forward to menopause when I get to repeat the hot flashes. It was January, it was COLD outside, and I was running around in T-shirts and tank tops because I was so hot. It was like I was on fire on the inside. I was very excited about the weight loss, it was dropping off and within 12 weeks I was almost back to my pre-pregnancy weight without exercising at all. My hands would shake like I was always on a caffeine OD. I'm already kind of clumsy, this just made it that much worse. It was bothersome, but I had no idea what I was in for. Once my body used up all the thyroid hormone that I had stored, there was nothing. My thyroid isn't just under-active...it isn't active at all. It is just a dead organ in my neck. It's been downhill since then.

I'll take this opportunity to apologize. This is it, the only time I'm going to do it. I'm sorry my disease impacts the way I relate to the world, how/what I can do, and the relationships in my life. I know it's hard to be there for someone whose illness isn't obvious, whose symptoms don't always seem possible or real, someone who looks "normal" but acts disabled. I know that my symptoms may come across as contrived, that I'm just "milking it" or taking advantage of my diagnosis. I promise this isn't true. I really am exhausted, no matter how much I sleep. I really am confused and unable to concentrate, it's not that I'm not trying to pay attention to you or that what you say isn't important to me. I forget things, all the time, even really important things. I don't mean to ignore you or blow you off, sometimes I just can't do anything but hide inside myself for a bit. More often than not, I just don't have anything left after I've spent the day with my daughter. Of course I want to hang out and get something to eat or grab some drinks, I just simply can't. Some days I can't even drag my ass into the shower, it is that hard. My joints swell up, I can't even wear my class ring anymore and it's only been two years since I graduated. My hair falls out and my skin is dry and flaky and breaking out like crazy. My balance is off more than it used to be, so I fall even more often now. I'm afraid that I am going to have to have surgery soon too. I have a mass on my thyroid now and if it begins to grow, I'll have to allow a doctor to slice my neck open and remove my useless thyroid glands. I'm sad and anxious and so very tired...and this is all with synthetic thyroid hormone replacement. I have no idea what I would be like without my meds, but I wish there were some better options.

I am trying to do other things better now. I am making an effort to take care of myself, to exercise and lose weight (as you can see from the other posts on this blog). I know that carrying around extra pounds isn't helping my symptoms. Hopefully staying closer to my friends will help too, I don't think that shutting myself away has done me any favors. I have other medical conditions to deal with as well, many people with autoimmune diseases do. It's very common to have more than one autoimmune disorder at once. Mine are Hashimoto's and Chronic Fatigue Syndrome. I've had CFS since I was a junior in high school. I have periods of days, or even weeks, where I am so exhausted that it is all I can do to keep my eyes open all day. I've heard people comment about how "lazy" I am, or how much I must party since all I do is sleep all day. It could be that I slept 14 hours last night and I can still barely stay awake now, or it may be that my anxiety is so bad that I haven't slept more than 2 or 3 hours at a time in several days. The bottom line is I don't talk about this stuff, but maybe I should. I don't want to complain all the time and I don't want to burden anyone with my issues, however I do want people to understand. It's not just about my thyroid and fatigue conditions, it's about other people who have fibromyalgia or lupus or Grave's or even arthritis. Everyone is dealing with their own circumstances and just because you don't or can't see a problem doesn't mean that there isn't a problem. Don't be so quick to judge other people's battles (and everyone has them), especially when you don't know anything about them.

I'll keep dragging myself out of bed for her. I'll keep trying to be as 'normal' as possible. I will be the best example I can be for her. More than anything else in the world, I hope that she never has this.



**Note: I probably won't do anything quite so heavy anytime soon. Stay turned!**