My Graves' Antibodies
Last updated: April 2023
I recently had an appointment with my endocrinologist. Every time I get my thyroid labs done, I have my Graves' antibody numbers checked. This last time, they had once again gone from the 4 they were last time to the 3 that they have been at for a while now.
“So this is a good sign my thyroid eye disease won’t be coming back?” I asked my doctor.
“Yes, this is a good sign that you’re in the clear from having this happen to you again,” she said.
I made a little happy gesture with my hands. Even though my Graves' antibodies have been low for quite some time and the chance of recurrence of this disease is quite low, there is always a small part of me that is worried there could be a possibility of a flare-up. I know it is my anxiety choosing to hold onto it and the fear is more irrational than anything.
From how my endocrinologist explained it to me in the past, my Graves' antibodies have been inactive for quite some time. They are still lingering in the background but they are just there, not doing anything.
The relationship between my Graves' antibodies and thyroid eye disease
When I was first diagnosed with thyroid eye disease (TED), my Graves' antibodies were at 18. Then they jumped to 32. With my endocrinologist’s advice, I went off my thyroid medication for six weeks to give my body a break. When it regulated itself again, my TSH and T4 were back to unusually high numbers. I started medication again, on a lower dose than I was on previously.
During that time, my Graves' antibodies went from active to inactive. They caused a lot of damage in the short period of months they were active. My TED remained steady for years after. My thyroid eye doctor described TED as being caused by my thyroid but not influenced by how my thyroid was operating. Meaning, once the Graves' antibodies did their thing by causing TED, my thyroid and my thyroid eye disease were two separate parts of my body.
My Graves' antibodies switched off and faded into the background, slowly decreasing long before my TED symptoms did the same. With every lab test, I kept seeing the number drop. A sign that my body was healing. From 32 back to 18 then to 14 and 11. It has remained in the 3 range for well over a year now.
The validation from my endocrinologist that it is unlikely my Graves' antibodies will become active again gave me hope. I was hesitant to ask her that question for a long time, afraid that my TSH and T4 never being consistent for very long could somehow impact where the antibodies stood. It reassured me while relieving me of much of the worry I had silently carried over the last four years.
Reflecting on my journey
My thyroid journey has been a journey. With its highs and lows, both emotionally and physically. My thyroid eye disease journey has had higher peaks and lower valleys than I can explain. My eyes will be in this plateau state while the Graves' antibodies linger in the background, simply observing the ebbs and flows my thyroid will continue to make.
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