My Hashimoto’s Diagnosis

One year ago, I was diagnosed with Hashimoto’s, an autoimmune disorder that can cause hypothyroidism, or underactive thyroid. With this disease, your immune system attacks your thyroid and the thyroid becomes damaged and can’t make enough thyroid hormones. Thyroid hormones regulate nearly every organ in your body… so they are quite important! If your thyroid isn’t making thyroid hormones, your organs will gradually stop working as they should.

For me it came on quite suddenly. Well, it seemed that way. I got sick in mid-January of 2018 with what seemed like a regular cold virus that was going around. I was sick for only a couple of days, but swelling around my eyes made them look tiny and red for about a month (see photo below). Any of my friends or family who saw me thought I looked “off.” I had a continuous dripping down the back of my throat so I thought maybe I had a sinus infection. At the same time, I started feeling really sleepy in the middle of the day — I couldn’t keep my tiny eyes open! — and I was really cold all the time. I would be shivering in my bed at night, trying to get warm.

I also began to feel fatigued with exercise. Hills that I regularly hiked at a rapid pace became so hard for me to climb. My muscles started cramping all over my body, including my legs, feet, hands, and arms. Muscle cramping was something that I had suffered with for years before I was diagnosed with celiac disease, so I knew I was having an autoimmune reaction of some kind.

I had other symptoms too. I had brain fog – for example, I couldn’t remember the words “post office.” I had mood swings and was depressed at times. I was swollen – my pants were tighter around my thighs and my ankles were larger. I had extremely dry skin on my hands and elbows. I became a bit clumsy and uncoordinated. My stomach bloated and my digestion slowed down.

One symptom that really scared me was that my speech was affected. I couldn’t correctly say words with the letter ‘s’ – it was almost like I had a lisp. I could hear it, but I couldn’t control it. It was only later that I would learn that “enlargement of the tongue” is a symptom of Hashimoto’s.

My first thought with all of these symptoms was that I was getting “glutened,” but I couldn’t figure out what it could be. What I knew for sure was that I was not well and I needed to see a doctor right away.

My (new) doctor listened to me and my gluten theory. She said she wanted to run some labs, including a gluten antibody test, and she thought I should have my thyroid checked also. Despite years of living with celiac disease, and knowing the connection to thyroid conditions, I didn’t consider the possibility of having an autoimmune thyroid condition.

So I was shocked when the results came back: “severe hypothyroidism.” The normal range for TSH (Thyroid Stimulating Hormone) is 0.45-4.50, with anything above 4.50 indicating a low-functioning thyroid gland. Mine was 101. Three doctors told me they had never seen a number that high. And my TPO Antibodies, which indicate that the immune system is attacking the thyroid, were 171 – normal range is 0-34, with optimal being 0. My thyroglobulin antibody, another indicator of autoimmune thyroid disease, was 6.8 with 0-.9 being the normal range.

I felt overwhelmed and so disappointed. Why was this happening to me? I had been gluten-free for 15 years – I thought this was a safeguard against developing other autoimmune diseases.

I was put on thyroid replacement right away as I was considered in the “danger zone” with my shockingly high TSH. I chose to take Armour and I felt better within about 2 weeks, but though my symptoms were improving (Hooray! Relief!), I was worried about why I had developed another autoimmune disease and how I could prevent more from happening to me.

I have learned that gluten, soy, dairy and sugar are common triggers for autoimmune and specifically Hashimoto’s. I had already been gluten and soy-free (except for occasional tamari), so I decided to give up dairy and sugar too. No more cheese – boo hoo! No more ice cream, not even the dairy-free kind because it contains sugar. No more sweets at all! To be even more restrictive than I have been already is a bummer, but I am determined to not get another autoimmune disease…  what if the next one doesn’t have a medication to help? What if the next one is more debilitating and/or more painful?

Autoimmune disease can be triggered and/or exacerbated by stress. I have really paid attention to my stress level and have begun to remind myself to relax, to not get riled up by things that aren’t worth it. I’m raising teenage girls which can be challenging and has definitely tried my nerves! Breathe… relax… And this may sound silly, but I had started playing competitive tennis right before I got sick and would get really, really nervous and anxious before and during my matches. I have wondered if this in any way contributed to the onset of the disease. I don’t stress out about tennis anymore!

Six months after my first blood test, I asked to have my TSH and my antibodies retested. I was told that they don’t usually retest the antibodies but that they could if I wanted them to. I wanted them to. My TSH was down to .6 (to be expected since I am taking thyroid hormone replacement), but the good news was that my TPO antibodies fell into the normal range down from 171 to 15. I’m still aiming for 0, but am very happy that they have come down so far. As one doctor said, “That’s impressive.” My thyroglobulin antibodies were still high but came down to 3.7 from 6.8, which was a good sign that things were going in the right direction.

A year later, I’m feeling great, physically, mentally and emotionally. I’d like to retest my antibodies and see if I have maintained or lowered the numbers. If not, I may venture deeper into diet — grain-free and autoimmune paleo are possibilities. I have to remind myself every day to relax my shoulders, slow down and not stress.

Do you have Hashimoto’s? How have you managed? Please share your stories!