I have written and rewritten this post a few times now.
One would think that it shouldn’t be so hard. So many people out there in the blogosphere already share so many intimate details of their life. Me, not as much. At least not here.
If you know me in real life, you probably wouldn’t say that though. I’m pretty open – a sharer. Yes, I can talk too much sometimes. And so yes, this post is long and wordy. Skip it if you’re not interested.
The past year has been a bit of a struggle for me. And indeed, as of last week, it has officially been an entire year since we got the news.
And then I realized that January is Thyroid Awareness Month.
So, I figured it was time to put this out there and talk about it.
Last January, I was diagnosed with Graves’ Disease. Another autoimmune disease, in addition to the celiac disease. I’ve had a hard time accepting it. And I’ve spent a good part of this past year trying to figure out what it means.
In the early years after my celiac diagnosis, we always heard, and as a support group leader, I often repeated, that we must take our gluten free diet seriously, lest we end up with another autoimmune disease due to continual agitation of our immune systems by digesting gluten. “If in doubt, go without.” Right? So imagine my surprise when after fifteen years of being on the gluten free diet, and feeling like my celiac disease and gluten free diet was under control, I am told I have another autoimmune disease.
Needless to say, I took it pretty hard.
But at the same time it was nice to know what was wrong with me. That I wasn’t crazy and overly anxious. That I didn’t have a progressive neurological disease. That gluten wasn’t sneaking into my diet.
You see, I went in to see my primary care doctor in October of 2010 with severe hand tremors and digestive issues, mainly gas and bloating. I also went to the dermatologist with severely dry, itchy skin and a horrible rash on my shins, that same month.
I had also been trying for months to figure out what was sneaking into my diet. Every day after about 3pm, my digestive system was in an uproar. Like clockwork. I put myself through a modified diet, eliminating things that I thought could be bothering my tummy and causing the late-day gassiness. When I told my primary care doctor, she said that I should just take some Gas-X, that happens when you eat a lot of vegetables. Uh, sure.
And when I showed her my hand tremors, within five minutes she diagnosed me with Essential Tremor (ET), a progressive neurological disease that is usually familial in nature.
My primary care doctor prescribed some low-dose propranolol, a beta blocker, to help calm the tremors. Desperately wanting some relief, I started taking the medication. The medication helped, but it also caused my calves to swell up and I had a scary instance of blurred vision, which I had never experienced before. When I called to tell her, the doctor said that the propranolol shouldn’t have those side effects and told me to take a break from it for a week and try again, since it was helping my tremors. But the swelling in my legs still wouldn’t go down despite going off the medication, but yet I didn’t know what else to do.
Now, I’ll admit, the ET diagnosis felt like it fit, at first. But at my follow-up appointment with her a month later, I again mentioned my tummy troubles and again she told me again to just take some Gas-X. I reminded her of my celiac disease and that I felt like I was pretty strict on my gluten free diet. And then she asked me if I had ever *really* been tested for celiac!
Now, I’d only seen her maybe three or four times in three years or so, so it wasn’t like she has been seeing me for a long time, but… We had talked about celiac at all of my previous visits and how long I had been dealing with it and such. Every year I would bring in info from the University of Chicago Celiac Disease Center for her to read and to make sure I got the proper follow-up testing. (Apparently that hadn’t made an impression.) Well, to say the least, I got a little upset with her. I told her exactly when I was diagnosed, that it was with a very conclusive biopsy, and that I would be happy to bring in the paperwork to prove it to her. At that point she told me that the only thing she knew to do was to send me to a gastroenterologist.
I also requested to see a neurologist at this point since the propranolol wasn’t working for me and the tremors were affecting my daily life and ability to do my job. She agreed and suggested I see one within their practice. Unfortunately this neuro was on maternity leave until January 1, 2011.
So in the meantime, I got in to see the gastroenterologist, but I had him stumped. He sent me off with a big long list of tests to have done at the lab and scheduled me for an endoscopy in late-January. (It was now just before Christmas.)
When we returned from the Christmas holiday, I got in to see the neurologist and she did a thorough exam. She was aware of the possibility of neurological issues related to celiac disease and tested me for those (ataxia, peripheral neuropathy). She wouldn’t say as much, but I got the feeling at the appointment that she wasn’t convinced that it was ET. So she sent me away with a lap test slip for liver function, blood glucose and thyroid function. A week or so later I was able to take time off work to go in for the multiple hours of testing, both the gastro-ordered tests and the neuro-ordered tests.
Two days later, we had a preliminary answer. Super low thyroid stimulating hormone (TSH), undetectable at less than .007.
Thank you to the neurologist for ordering the thyroid test!
And I loved it when my primary care doctor called to say that “we should really thank Dr. Neurologist for figuring it out”, I wanted to scream, “Yes, Dr Primary Care, YOU should thank her, since she figured it out.” Rawr!
So, you’re probably wondering, what the heck is Graves’ disease already?
Graves’ disease, also known as toxic diffuse goiter, is the most common cause of hyperthyroidism – a disorder that occurs when the thyroid gland makes more thyroid hormone than the body needs.
The thyroid is a small, butterfly-shaped gland in the front of the neck below the larynx, or voice box. The thyroid gland makes two thyroid hormones, triiodothyronine (T3) and thyroxine (T4). Thyroid hormones affect metabolism, brain development, breathing, heart and nervous system functions, body temperature, muscle strength, skin dryness, menstrual cycles, weight, cholesterol levels, and emotional & cognitive functions.
Thyroid hormone production is regulated by another hormone called thyroid-stimulating hormone (TSH), which is made by the pituitary gland located in the brain.
In Graves’ disease, the immune system makes antibodies called thyroid-stimulating immunoglobulin (TSI) that attach to thyroid cells. TSI mimics the action of TSH and stimulates the thyroid to make too much thyroid hormone. Sometimes the antibodies can instead block thyroid hormone production, leading to a confusing clinical picture.
- Difficulty sleeping (insomnia) – yes, I had been waking up multiple times in the night, unable to go back to sleep for a while. Totally unlike me.
- Fatigue – not especially.
- Frequent bowel movement – perhaps diarrhea – yes, and the gassiness every day after about 3pm.
- Heart palpitations – yes, a couple of instances of it, but at the time I didn’t recognize it for what it was.
- Heat intolerance – yes, I had been joking that my internal thermostat was broken when I exerted myself, or even just blow-drying my hair in the warm bathroom in the mornings.
- Increased sweating – I’ve always been sweaty…
- Irritability – ha! never! (kidding…) But now that I am not so irritable, I can tell that I was. Ask my husband!
- Mental disturbances – uh, what kind?
- Muscle weakness – yes, it had gotten to the point where I was having difficulty making it up an entire flight of stairs. My legs were extremely wobbly.
- Nervousness – always!
- Problems with fertility – not an issue as far as we know.
- Shortness of breath – yes, but I was blaming it on our elevation, even after living three years at high altitude.
- Sudden paralysis – no.
- Tremor/shakiness – yes, and they had gotten really bad, to the point where I dropped some things and I was getting nervous when using sharp knives while chopping vegetables.
- Vision changes – no.
- Weight loss – but perhaps weight gain – in hindsight, I didn’t start dropping weight until right before my diagnosis, about 6 pounds in two months, despite that I can now recognize that I was eating a LOT of food during this time and I wasn’t gaining weight like I typically would have.
- Dizziness – no
- Thinning of hair – not that I could tell.
- Itching and hives – the air here in the SW is very dry, but I had gotten excessively itchy and dry on parts of my body that weren’t usually dry. As well, I was excessively itchy in a line from my thyroid, down to my belly button. A bit odd.
- Possible increase in blood sugar – maybe.
- Prominent “stare” of the eyes – no.
- Protrusion of the eyes, with or without double vision – luckily, no.
- Accelerated loss of calcium from bones, which increases the risk of osteoporosis and fractures – not as far as we knew at the time of diagnosis.
So, at the end of January a year ago, I began treatment for the disease. I will follow-up with a second post about treatment and coping in the next week or so.
For now, I want you all to “Check Your Neck!” in honor of Thyroid Awareness Month. (I did have a slightly enlarged thyroid gland that was visible after it was pointed out to me.) And if you have celiac disease, or another autoimmune disease, be sure to get your TSH tested at least once a year. Just because we have celiac disease, we are all at a higher risk for another autoimmune disease. Be your own advocate for your health. Continue to *politely* educate your doctors, even if they don’t appear to be listening.
And always get copies of your lab results! Looking back, my TSH test from a year previous was .002 away from being too low, out of the normal range. So the disease process had already begun, way back in January 2010.
I apologize for the length of this post…but I had to get it all out there. Thanks to those of you who are still reading, for sticking with me. We’ll get back to recipes soon.