Graves’ Disease – Far from a straight progress line

Graves’ Disease isn’t a clear straight tunnel with a light at the end. It’s more like a labyrinth full of surprise twist and turns and dead ends, and new paths full of hopes and confusion.

I met with my endocrinologist this morning. I informed her of the changes in my symptoms since we began the beta-blockers and anti-thyroid drugs treatments:

  • Hand Tremors – Gone
  • Rapid irregular heartbeat – From 100+ with flutters to stable 70’s
  • Hot Flashes – From several a day to rare now.
  • Menstrual flow – From 1 day a month to 2-3 days a month.
  • Mood Instability – Same
  • Hair Loss – Same
  • New: Mild to Extreme muscle & joint pain.
  • New: Swelling feet, legs, hands and around the eyes. (easy to bruise when that happens.)

research-1029340_1920My endocrinologist wants me to take new thyroid-stimulating hormone (TSH) test and thyroid hormone tests, to measure my levels of two types of thyroid hormones called T3 and T4. Although my last test came back normal, she wants to make sure that I’m not falling into hypothyroidism with the medication, which could explain the new symptoms. This will happen in 2-3 weeks. If my hormones are still good, she is sending me to see a rheumatologist, as there is a possibility that I have developed a second auto-immune illness, like Fibromyalgia or Lupus. Being of Métis descent, it raises the odds of that happening.

She also worries that I may be reacting to the medicine so she has recommended that we move forward with the Radioactive iodine. I, therefore, have an appointment to take a radioactive thyroid scan and radioactive iodine uptake test in May. I took this test a few months go when I was first diagnosed with hyperthyroidism. I have to retake the radioactive thyroid scan and radioactive iodine uptake test because it’s been too long since the last test and they want to make sure that radioactive iodine treatment is still necessary.

I’m to have further blood tests in late May and I’m seeing my endocrinologist in early June to review all the results from now till then and make sure radioactive iodine treatment is the way to go for me.

muyoungdeung-1484438_1920In addition, I was informed that my thyroid nodules are bigger than first suspected. Instead of 1 cm & 3 cm, they are now at 6 cm & 8 cm. My endocrinologist wants to retest after the radioactive treatment. She explained that sometimes the radioactive iodine treatment will take care of the nodules issue, but they have to be sure. If it continues to grow, I will need to get a biopsy.

It’s a lot to absorb. So many unknowns are still up in the air. Dealing with Graves Disease is a lot of trials and waiting for results. It’s feeling confused and wondering if you are truly understanding everything that is happening to you. It’s realising that even if the doctors take you seriously, they still don’t know what’s truly going on.

Reading other Graves Disease sufferers stories, there is a lot out there who are struggling to even be heard or taken seriously. I am so grateful that through all of this, I have had a great general doctor and endocrinologist who truly listen and don’t mess around with possibilities.

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