Ouch, my thyroid!

I’ve been thinking about writing this post for a while now, but haven’t gotten around to it been brave enough to write it yet. It’s finally gotten to the point where this is taking up so much of my time and energy (and, frankly, just plain stealing my energy) that it’s time to write.

I have Graves’ disease. This is a type of hyperthyroidism, where my thyroid gland is overactive and produces way too much thyroid hormone.

Here’s how a normal thyroid gland is supposed to work. Your pituitary gland (in your brain) makes a hormone called thyroid stimulating hormone (TSH). This hormone goes to your thyroid gland and tells your thyroid to make two hormones, T3 and T4. T3 and T4 are basically just two different forms the same hormone; one has 3 iodine molecules on it (T3) and the other has 4 iodine molecules (T4.) See, science isn’t that hard!

Anyway, when your body needs more thyroid hormone, your brain makes more TSH, and your thyroid makes more T3 and T4. When your body has enough T3 and T4, your brain temporarily stops making TSH, and your thyroid temporarily stops making T3 and T4.

My body is a little messed up. Graves’ disease is an autoimmune disease. I am making antibodies (like what you make when you are sick to fight off bacteria and viruses) that look like TSH. So my thyroid is seeing all this antibody, thinks that it is TSH, and is going crazy making, storing, and releasing T3 and T4.

What’s the big deal? Oh my, it’s a huge deal. T3 and T4 are major metabolism hormones. They tell your body how much it needs to eat and drink, whether it should be gaining or losing weight, how fast your heart needs to beat, what your blood pressure should be, what your periods are like, all kinds of fun stuff.

I was diagnosed in February 2011, but had been having symptoms for a good 6 months before my diagnosis. I was starving all the time, and putting on weight. I was hot all winter long. Seriously. I was hot sitting on the couch in a t-shirt and shorts while Hubby Doc froze under 2 blankets in layers of sweats. My resting heart rate was 120 (normal is 60-80). My blood pressure was high, and my heart pounded so hard when I laid down that it kept me up at night. And I had to pee, all the time. I was nervous, anxious, and couldn’t sit still. If I had too much coffee, my fingers literally vibrated. It was awful.

I finally had some bloodwork done late in 2010, and found that my my T3 and T4 were off-the-charts high, and my TSH was undetectable (my brain had stopped making it because there was so darn much T3 and T4 running around). It still took me 3 months to get an appointment with an endocrinologist. She put me on two medications – one to help with the side effects on my heart, and one to stop my thyroid from making so much hormone.

Unfortunately, there’s no way to stop the antibodies from being made, and the anti-thyroid drug isn’t all that good for your liver long-term, so this was just a short-term solution. In November 2011 I went in for the real treatment.

I had radioactive iodine therapy. The only place in your body that uses iodine is your thyroid gland. So I took a pill that had radioactive iodine in it. All the iodine went to my thyroid, and the radiation slowly killed all the cells. Poof – no more thyroid! I had to sleep by myself for a week, and use my own bathroom for a few days, but there was no glowing in the dark. (Darn!)

The cells still had some hormone stored, so when the cells died and broke apart my levels went high again for a little while. Then most of my T3 and T4 were out of my system, and I went low. Boy, did I go low.
I was exhausted. I couldn’t stay awake for more than 6 hours at a time. I slept for 8-10 hours at night, and again for 3-4 hours in the afternoon. I wasn’t hungry (but didn’t lose weight), and I was freezing. Like two blankets, a sweater, and a space heater freezing. So I started on hormone supplements, Synthroid. (I’m willing to bet that most of you know someone who is on Synthroid, or some other thyroid hormone supplement. Hypothyroidism is pretty common.)

Now we’re trying to adjust my medication dose so my T3 and T4 stay not too low, not too high, but just right. (Yes, Goldilocks, I’ll be eating your porridge now.) This is tough, because I do still have a little bit of my own T3 and T4 left, but I’m not making any new T3 or T4. So as my “leftover” hormone gets broken down, we need to increase my dose of the medication. Problem is, my levels start to drop, then there are a few days before I notice the symptoms, then a phone call to my endocrinologist, and then a couple of days before the new medication dose kicks in. So I’m feeling good for a few weeks, then I’m exhausted for a week or so, then I’m back on the good-wagon. It’s been a roller coaster.

So when I say that I’m too tired and I don’t want to come out and play, it’s not you, it really is me. I’m exhausted. And I just want to go to bed. Really. It’s 9:00pm now, and I’m seriously ready for bed. Good night.

  • Gourdgal40

    Gee Marybeth. Sorry to hear. About your thyroid Yes I have 2 friends that are on thyroid medicine you are right getting it regulated is the hard part. Sleep when you have to and take care of your self.

  • Dani Vello

    Take care of yourself, that is the best thing you can do right now. And get plenty of rest, the body repairs itself while we sleep, it’s so important.  I hope you are feeling better soon. :)

  • Tammy

    Sorry to hear you’re going through this.  I was diagnosed with hypothyroidism several years ago and take Armour thyroid (natural) to regulate it.  About six months ago I started noticing a pressure across my throat like somebody had their hand on my throat.  Went in and they discovered multiple nodules in my thyroid.  The nodules are causing similar type symptoms as you are having.  Having researched it more I now discover that my high blood pressure and high pulse rate are probably a direct result of my thyroid condition.  It’s a definite possibility that I’ll have to have my thryoid removed if the nodules continue to grow.  It’s amazing how much the thyroid can mess up your system.

    I hope your spouse is more supportive of you then my partner is.  His constant demands that I go to the doctor because he’s tired of my constant exhaustion is far from supportive.  I pray the best for you on this.

  • http://profiles.google.com/katieolthoff Katie Olthoff

    Ugh.  Never had to deal with hyper, but I understand the fatigue from hypothyroidism.  I was diagnosed about 2 years ago, and I still dont’ feel like everything is right.  But, having another baby in between made it difficult to get everything adjusted just right, too.

    Your last paragraph really hits home.  In high school, my friends would go out after football games and I’d go home to sleep. 

  • http://twitter.com/MouseInMyPocket Andrea Turner

    Glad to see you share this – and to know that you’ve not been blowing us off. :)

  • Lana Wallpe

    Bless your heart.  That is a huge pain to deal with, and being tired all the time is absolutely no fun.  Thanks for sharing.  Now we can keep a better eye on you ;-)  

  • alarmclockwars

    It’s getting better, but is still tough to deal with. I try to sleep when I need to, but it’s hard to balance all the things that need to get done, too.

  • alarmclockwars

    Thanks, I’m trying to get as much sleep as I need/can. Some days I feel like I need it more than others!

  • alarmclockwars

    Tammy, I hope you can get your thyroid condition squared away. It is exhausting, physically and emotionally, to go through. Because mine is auto-immune, I didn’t need surgery to take out my thyroid, the radioactive treatment was enough. I am lucky to have a very supportive husband; I’m sorry to hear that your partner isn’t as supportive as he could be. You will really need to lean on him as you go through the rest of your diagnostics and treatment. Good luck, and I’ll be keeping you in my thoughts!

  • alarmclockwars

    Katie, I was just talking to someone who had their thyroid surgically removed, and he said it took almost a year and a half to get regulated. Pregnancy definitely throws a wrench into things – you need a higher dose when you are pregnant, and then a lower dose after the baby is born. That’s something I’m not necessarily looking forward to! Good luck on getting your medication tweaked just right… And if you don’t feel “right,” be sure to keep talking to your doctor. There are “normal” levels for the hormone concentrations, but sometimes people don’t fall in the normal range. If you still have symptoms, even though your tests may be “normal,” you are probably not regulated right yet.

  • alarmclockwars

    Nope, not blowing anyone off. Legitimately exhausted!

  • alarmclockwars

    Thanks. Now you know why all that coffee is so important on my early morning drives to Indianapolis!

  • katieolthoff

    Thanks Marybeth.

    I’m actually going to see a midwife/nurse practictioner about it. There’s one in the area that’s supposed to be VERY good with hormonal stuff.
    AND, I have decreased my gluten in take and I’m feeling a bit better, too. Coincidence? I don’t know. Gluten problems can cause an autoimmune response, soo….

  • Tammy

    Sorry to hear you’re going through this.  I was diagnosed with hypothyroidism several years ago and take Armour thyroid (natural) to regulate it.  About six months ago I started noticing a pressure across my throat like somebody had their hand on my throat.  Went in and they discovered multiple nodules in my thyroid.  The nodules are causing similar type symptoms as you are having.  Having researched it more I now discover that my high blood pressure and high pulse rate are probably a direct result of my thyroid condition.  It’s a definite possibility that I’ll have to have my thryoid removed if the nodules continue to grow.  It’s amazing how much the thyroid can mess up your system.

    I hope your spouse is more supportive of you then my partner is.  His constant demands that I go to the doctor because he’s tired of my constant exhaustion is far from supportive.  I pray the best for you on this.