My journey into autoimmune thyroid disease, Part 1

Disclaimer - Before you read this post, please be aware that I have no medical degree. The things stated in this post are MY OPINION ONLY, and should NOT be taken as any kind of medical advice. No information in this post is meant to diagnose or treat thyroid disease or any medical problem for that matter. My intent is NOT to spread a mistrust of doctors, but rather simply to share my story about my own experience with autoimmune thyroid disease.

About three months after the birth of my second child (this would have been in March of 2008), I began to really notice that I was not feeling well. I had had a very easy recovery from the c-section, but this was different. I just felt "off." At first I tried to excuse all my symptoms, thinking that it was somehow all related to post-pregnancy adjustments. I also figured that since my daughter was not yet sleeping through the night that I was just really sleep-deprived.

By the time summer came, I was downright miserable. My hair was falling out in handfuls, way past the time that seemed normal for post-partum hairloss. I was dragging all day long, and just had no energy. But summer was my busy time of the year, as I headed up a small daycamp at our school during the summer months. I figured I had just taken on too much, especially since my daughter was STILL not sleeping through the night. I did consider the possibility that I was either anemic or had a thyroid problem, but I didn't WANT there to be a problem, and I guess that I talked myself out of believing I needed to see a doctor.

Finally, in October when my mom was able to come and stay with us for a week, I told my mom how I was feeling, and she really thought I needed to get checked out. It was November before I actually went in to see my doctor. I told her about the complete exhaustion that would hit me as soon as I woke up in the morning and lasted all day. My skin was dry, my once glossy, thick hair was now thin and limp, my eyes were puffy and sunken, and I was starting to get searing muscle cramps in my back and legs and feet that felt like charlie horses. The doctor told me she would do a full blood workup, but also threw in a little comment about possibly needing anti-depressants. (Strictly my opinion here, but when a doctor mentions anti-depressants, that is the first sign that you might need to switch doctors!) I told her kindly but firmly that I was not interested in anti-depressants.

I went back in December for the followup and bloodwork results. The first thing my doctor mentioned before she had even shut the door was that my thyroid level was ridiculously high. She joked that she didn't even know how I had driven myself to the doctor's office! The level she was referring to is called TSH (thyroid stimulating hormone). The best range for TSH is between a 1and 2 (although some people actually feel better when it is between 0 and 1). Mine was a 54. That definitely confirmed a thyroid problem. My doctor told me she would start me on a prescription medication called Levothryoxine. She told me that I would start feeling better in a matter of days. It was all rather confusing because I didn't know anything about thyroid problems, but I did feel relieved that I would be getting some help very soon.

My doctor also sent me for an ultrasound of my thyroid to check for nodules. When those results came back, a nurse technician from my doctor's office called to tell me that there were no nodules, but that the thyroid was enlarged which meant it was now called a goiter. I was relieved that there were no nodules, since I had heard of thyroid cancer. But the term goiter scared me a little. I had heard of people with goiters that caused their neck to swell to a grotesque size, and I wondered if that was going to happen to me. The nurse technician told me that their office was going to hand me over to a thyroid specialist (endocrinologist), since there was nothing further they could do for me. When I expressed concern about the goiter, the nurse told me that usually they use radiation treatments to zap it. Needless to say, I was very alarmed by this! I had no idea what the ramifications of that treatment would be, especially since my husband and I were considering having more children in the future and I wasn't sure if that would be possible after radiation treatments. The nurse was dismissive, and when I asked if it would be possible to delay the treatments, she just cautioned that it might not be good to wait too long. That answer did nothing to make me feel better about the situation.
Now let me stop right here and tell you that a lot of what I was told by this doctor and nurse were completely false. 1.) When your TSH is practically off the charts, you are most likely NOT going to miraculously start feeling better within a day or two of starting medication. It is a process to bring your numbers down and get your levels in the right range. It would have been nice for them to tell me that, so that I would be prepared for the long process. 2.) They didn't read the ultrasound results correctly - I DID have a nodule, a 9mm nodule on the right side of my thyroid. I'm not really sure how they missed this one, because I later saw the report from the ultrasound with my own eyes and it very clearly stated there was a nodule. I found this information out at my new endocrinologists office. 3.) This is the worst thing I was told - that I might need radiation treatment for my thyroid condition. I am HYPOthyroid, which means underactive thyroid. As far as I know, radiation treatment is NEVER required for hypothryoid. Radiation treatment is used to "kill" an overactive thyroid, so it would be futile to "kill" an underactive thyroid that is already not even functioning at all, or functioning at a very limited capacity.

Little did I know that my journey was just beginning! More to come in another post!