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.

[PurpleNails Administrator in reply to nssimpson]

Definitely get a hold a auctual test records (and any scan report ect).

If it’s been 12 months since last thyroid test I’d arrange a complete re test.

Might be quicker to use private service for blood test as NHS rarely test FT3 and key nutrients.

List of companies offering different options, some packages include thyroid function, key nutrients and thyroid Antibodies. Others basic function only. some also have discount codes available.

thyroiduk.org/help-and-supp...

You order test online the kits arrives via post sample taken by finger prick (extra fee for private venous draw). Complete test early in week (to avoid weekend delays) & track sample back by post - results usually available online quite quickly. Medichecks thyroid advanced a good option.

Ideally test just before 09.00. fast overnight, (those who take thyroid replacement should time it to delay dose until after). Remember to leave off biotin 3-5 days before. Biotin has potential to interfere with test process & skew results.

We have had members travel overseas & pay privately for RFA treatments but never had post on Thyroid Artery Goiter Embolization.

There’s a Facebook group called save your thyroid non surgical nodule procedure. Mostly US members but there may be someone with experience of TAE here or maybe a similar group.

[nssimpson in reply to PurpleNails]

Thanks for your input. I have made an appointment with my GP next week so I'll see if they can order new tests including the extra stuff you've advised. If that's not possible in a timely manner then I guess private is my only option.

The NHS really is on its knees. I feel like this should have been dealt with much quicker.

[nssimpson]

Has anyone on here had a bigger goitre?

[nssimpson]

I'm really panicking about having a complete thyroidectomy. Originally the plan was for half but after waiting a year to be told I can't have RFA that consultant recommended a complete removal.

😭