RFA on 130mm goitre?

[nssimpson]

Hi all

Well I have a large goitre on one side (approx 130mm) and a slightly enlarged goitre on the other side.

Two years ago I noticed it and eventually saw a consultant that wanted to remove it. It's causing significant deviation of the wind pipe.

I then heard about RFA and today after waiting 12 months I got a call from an RFA consultant. He said it's probably going to need multiple treatments and because the main swelling is below the collar bone where he can't access he doesn't think he'll be able to reduce it enough.

He's recommending a complete thyroidectomy. 😩

He also mentioned Thyroid artery goiter embolization (TAE) and said that's the breakthrough treatment that could work and save my thyroid but it's going to be at least 2 years before it comes to the UK. 😭😭😭

Anyone here got any advice?

[PurpleNails Administrator]

Welcome to forum

I’d imaging the swelling causes breathing,swallowing or voice issues? or pain where growing downwards?

Beside any physical issue how is function? Often thyroid swelling is caused by the thyroid struggling to produce sufficient hormone. So it really important this is throughly checked.

For full function you need TSH, FT4, FT3, TPO & TG Antibodies, also important to test folate,ferritin, B12 & Vitamin D. Have these been tested recently? Add any result & lab range.

12 months is a long wait for disappointing news. 2 years for a potential treatment must be difficult to hear too.

[nssimpson in reply to PurpleNails]

My voice is probably a bit deeper. The CT scan from 12 months ago showed a 50% compression of my wind pipe but I don't notice it that much although I can get out of breathe easily (I don't really exercise though). Swallowing seems okay.

When I had blood taken all I was told is that all levels are normal. Again, that was 12 months ago.

I really don't know what to do. I don't want a thyroidectomy but it's sounding like I don't have a choice... Unless I can find a huge sum of money to go abroad and have this new TAE treatment.