27 y/o looking for hope

I am an otherwise healthy 27-year-old woman, and about a year and a half ago I was unexpectedly diagnosed with Graves’ disease. I also tested positive for Hashimoto’s antibodies, though only Graves’ has ever been clinically active. Since my diagnosis, I have been on methimazole and propranolol to control my levels.

Both of my antibodies remain very high at over 900, and while I can sometimes reach normal thyroid levels, they fluctuate frequently. Because of this, I require blood work every three to four weeks, as things can change very quickly. Over time, this has taken a serious toll on my physical and mental health.

Before all of this, I had abundant energy. Now, I feel fatigued every day, not quite to the point of needing naps, but a constant heavy and full exhausted feeling. Many days I go home on my lunch break just to take a bath and rest. My heart symptoms also scare me. At diagnosis, my resting heart rate was 145. With propranolol, it is mostly controlled, but I still have random episodes where it reaches 100 even at rest, despite my labs being close to normal.

Emotionally, this has been devastating. My husband and I have been married for seven years, and we finally feel stable in a home we love with good jobs and ready to start a family. My endocrinologist says I can try to conceive as long as my levels are normal, and right now they mostly are. But because my levels fluctuate so often, trying to conceive feels terrifying.

I am also scared of the risks associated with PTU during pregnancy, the possibility of birth defects, and potential heart complications during pregnancy or delivery. These fears weigh on me constantly.

Lately, I feel depressed, unmotivated, and unlike myself. No one in my family has this condition, and it seemed to appear suddenly after a very stressful life event. I am more naturally minded but have always taken my medication as prescribed. I have been warned by many people not to pursue a total thyroidectomy, yet at the same time, I feel desperate for stability because this disease is severely affecting my quality of life and mental health.

My doctor has told me my options are to continue medication or consider a total thyroidectomy. I have no nodules, just an inflamed thyroid primarily on one side. My hope is to try for a baby next summer, and I plan to spend the next six months focusing heavily on my physical and mental health.

Right now, I feel lost and unsure which path to take. If anyone has success stories whether with long-term medication control or with surgery, I would be deeply grateful to hear them. I’m leaning towards just wanting this organ OUT of my body. 🥹🥹🥹

Thank you so much for listening. Sincerely,

A girl who is struggling but still hopeful