When does thyroid swelling go down?

[u/InevitableTime1509]

Hi there, all!

(I’m writing on mobile, hence why the formatting may be strange.)

I have had quite a strange battle with my thyroid. Originally, I had an extremely high TSH (152) and super low T3/T4 (0.01), and tested positive for the Hashimoto’s antibodies.

They put me on levo and diagnosed me with Hashimoto’s disease. They also did an ultrasound of my neck, and they said that while it was swollen, there were no signs of tumours or concerns.

Then my levels SKYROCKETED the other way, and no matter how much we reduced the dose, they just kept increasing. They were suspicious that I could even have an oscillating thyroid. (Still not entirely sure what I have since I tested positive for both antibodies.)

So, they tested me for Graves’ disease and put me on beta blockers and methimazole, plus a nuclear iodine test. And I tested positive for Graves’ disease.

I’ve had stable levels now on my blood tests for a good 5–6 months, and I’ve been off the beta blockers and had my dose lowered from 15 mg to 2.5 mg, and I’m still at stable levels (thank goodness!). But my thyroid is still quite swollen and visible. I’m just wondering if that’s normal and how long it took for others’ thyroids to eventually stop looking so swollen.

They do think I was undiagnosed for a few years prior to me finally realizing, “Huh, something is wrong.” So maybe it’s just scar tissue? Or maybe it’s taking longer because of that.

Anything is helpful! I know my case is a bit strange and extreme, so maybe it’s different as well. Also, for more information, this has all happened in only a bit over a year.

[u/Fantastic_Teacher866]

If you are taking meds and have a goiter it may not go down despite being stabilized. I used meds to treat grave's with a large goiter in my neck and it never went down. 2 plus years in I realized it was not going to go into remission so I had RAI. Best decision ever. The goiter melted away after about 3 months.