Grappling with Graves’ #3: The Long Road

As I have mentioned in my previous post, the Graves’ journey is a long one. The primary reason for that is that getting Thyroid Stimulating Hormones (TSH) to the proper level is not an exact science and it takes a while to work its magic. When taken daily, Levothyroxine, the drug used to treat hypothyroidism, takes approximately four to six weeks to get results. Most endocrinologists, therefore, space blood tests to check TSH levels at least two to three months apart. Further, when levels are not correct, doctors typically only make small adjustments in the dosage of medication so as to not overshoot their target. For me, that has meant five adjustments since I first started on the medication in September 2020 after waiting for my treatment to take effect. After each adjustment, I would wait two to three months and then have more tests to see if my TSH was finally normal.

This year (2022) in February, I finally had a normal TSH level for the first time in over two years! I was so relieved and hoped it meant I was on my way to feeling better. Unfortunately within a couple of weeks of getting those normal results, I started feeling bad again. I was exhausted and depressed, my muscles and joints ached constantly, and I was gaining weight. You would think by then I would automatically assign blame to my TSH level, but since I had just had a normal reading, I blamed everything but that (contrary to what he thinks, I did not blame my husband). I thought it was because I was stressed and not sleeping well. I blamed being overweight for being achy. It took me about a month to wake up and smell the coffee and when I finally did, I reached out to my doctor and she sent me for blood work immediately and we discovered my TSH level had jumped up. I was hypothyroid again. This time, my doctor increased my medication by two levels. She said she normally would not do that but my level had changed so drastically that she was concerned. After looking at my medical history, she became convinced that the level had changed as a result of steroid infusions I was having for Thyroid Eye Disease (more on that in a future post).

In a follow up appointment four weeks later, I learned that my TSH level was back to normal once again… at least for the time being. I’ll be getting more labs done in a couple of weeks and I am skeptical. I haven’t felt great in so long that I don’t even trust my own judgment any longer. I have a tendency to ignore my symptoms or chalk them up to other things. A friend recently told me that whenever anything is wrong, I should blame it on my Graves’ Disease. I wonder if Graves is responsible for all my typos… just saying. 😛