RFA treatment for toxic multinodular goitre

[Celticfiddler]

I am starting this post afresh as advised by PurpleNails the dialogue regarding RFA (RadioFrequency Ablation ) that I contributed to is from a few months ago and I have now had the procedure .

In July 2023 I saw the Consultant Radiologist at the Royal Berkshire to see if I was a candidate for the RFA treatment. I had gone to see and endocrinologist privately to get a referral to the RBH however, this was actually not necessary as they would have accepted a referral from my GP . My GP didn't believe me when I told her that !

They thought they could offer treatment last October but in fact I had it on 8th Jan this year.

The nodule in my goitre was /is very large and was above the size for a good clinical outcome but the Radiologist was happy to negotiate my choice and on the basis that I did not want surgery and that the goitre should improve on a cosmetic level it was agreed to proceed. He pointed out that I would need more that one treatment and that he could not guarantee to reduce the hyperthyroidism.

The whole procedure took more that 1.5 hours and I was in day surgery . The team at RBH were really great.

Interestingly one of the nurses supporting the radiologist mentioned that more and more patients are seeking RFA so there is a bit of hope that some clinics with reopen ?

I am now in my fourth week since the procedure and just had a blood test and my T4 has gone down so I am stopping my carbimazole at the moment. I will talk to my GP at the end of FEb. I am no longer under my local ENDO as I refused to have iodine or thyroidectomy last January.

warm regards to all

[helvella Administrator Thyroid UK]

Thanks for posting that - will be very helpful for anyone else considering their options.

Do provide updates, if you can! Please.

[SlowDragon Administrator]

That’s incredibly interesting

Keep us posted on progress

[PurpleNails Administrator]

Great post & fabulous update!

You fought to get a treatment option GPs & specialists seem to automatically deny.

You were on 5mg carbimazole I believe, but the sign that you can stop is brilliant news.

I’m imagining the time spent on the procedure is mostly preparation? 1 and a half hours seems much longer than I would have guessed.

[Celticfiddler in reply to PurpleNails]

Nice to hear from you PurpleNails actually the ablation was for 1.5 hours which I suspect is exceptionally long. This was due to the large nodule. My nodule was 3 times over the clinical guidelines for doing RFA but the consultant agreed to do it. He could have continued for another 15 mins but he recognised that I had had enough - which was true.

Whether or not the reduction in T4 will be sustained remains to be seen it is very early days. I was SO pleased that a T4 result came back from the lab as in the past year the LAB has only been reporting on TSH in my practice which is totally inadequate my GP explained to me that she can no longer request T4 on her computerised blood test request form !!

warm regards

[PurpleNails Administrator in reply to Celticfiddler]

That is a long time. What size was your nodule? Do you know what the clinical guidelines are?

Hope levels come down by right amount.

You need FT4 & really FT3. Dr should be able to add note of explanation as to why they are needed, but we do hear of labs following set procedure.