I have recently decided that I (think!) I would like to have a multinodular seen to by a specialist who may be able to perform Radiofrequency ablation on same. This procedure is not currently available in my country (Ireland) so I would have to go abroad to either the UK or Italy to receive this treatment.
I have a couple of questions that I would love if someone could help me with.
1)has anyone ever went abroad for this type of treatment? What was your experience?
2)are there any questions I should be asking to make sure the clinic/consultant is right for me (Tips on doing due diligence)?
I currently have no symptoms apart from some mild choking sometimes during my sleep but it has recently become very visible so of course there are some cosmetic concerns. I understand that RFA is not usually provided for nodules that are a risk for cancer and, thankfully, mine are benign at the moment.
I'd really appreciate any information anyone could provide. Thanks everyone!
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Championmar
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The procedure is not available for the majority of the UK either. 2 NSH hospital list the procedure and other areas often deny it is a potential option and refuse referrals saying for example there is no funding stream for it. Patients have had to battle for referral after providing the information themselves.
I collated some information previously. I think I would be a candidate but don’t have means to travel for assessment, procedure & follow up so haven’t pressed for referral.
As you looking to pay private for treatment? I’ll include link for private London clinic. I’ve no personal experience of using.
As you know the thyroid nodule must be benign & not overgrown ie not restosternal. Larger nodules/swelling need repeated treatments.
Most who have posted about having the procedure (links below) have had successful outcome. I know of a poster who had adverse reaction to the way the local anaesthetic was administered. Complications are fewer compared to surgery although the preservation of thyroid function on balance is far better with RFA.
It can be performed on multiple nodules.
Private London clinic. Q & A about the procedure & cost shown on site.
Oh my god PurpleNails - I cannot thank you enough for such comprehensive information. It is really very much appreciated! Yes, unfortunately I would have to pay for the procedure myself.
I am also happy to go outside the UK if there was a clinic with someone with even more experience. I am conscious that the thyroid has such delicate surrounding structures and, while it isn't causing any major symptoms right now, I think I would go ahead with the procedure and hope for the very best.
I will look into each of the links you provided and, if I do come to a decision, will be sure to post for others benefit. Thanks again!
I have two nodules - one seems to be a lot smaller than the other. The larger of the two is about 4.2cm and very visible. I am just waiting for the place in London to reply to me - I sent across photos of my ultrasound for the doctor to assess if I am a candidate. The minute I know a thing I will update this thread for anyone wanting details.
Hi, I'm considering RFA for my multinodular non-toxic goitre, sounds similar to yours. I live in northern England and have resigned to pay private to go see consultant down in London. He's currently reviewing CT scan that had at local NHS hospital (as have retrosternal extension) to see if I'm eligible and then if (fingers crossed) I am I need to then have 2 negative FNA cytology samples (I've not had FNA yet as NHS ultrasound showed almost certainly benign). Happy to keep you updated with my progress if I'm able to go ahead with this treatment.
Thyroid function is within range and I don't have any symptoms. I was feeling tired for a while but turns out its actually a B12 deficiency so I was happy it wasnt thyroid-related.
The growth is causing slight compressive issues where sometimes I wake up choking! I thought it was an anxiety-related thing for a long time until a doctor pointed out the lump in my neck. I don't know how I never noticed it as its pretty huge now!
Mostly, it is cosmetic for me. The goiter is quite large and grew quite rapidly the last year due to me eating a lot of cruciferous vegetables as I had a gallbladder issue so I'm assuming this rapid growth had a lot of do with a severe lack of iodine and nothing but cruciferous veg (as they were the only thing that didn't set off my gallbladder!).
I'm really hoping I am a candidate for RFA. I'm currently waiting for my hospital to send through my ultrasounds so that I can send them to the RFA specialist in London. Fingers crossed!
Interesting! Yes I was low in vitamin D but OK from a foliate and ferritin perspective. B12 was dangerously low but I hadnt eaten meat in years (I do now) and exercised quite a lot. My thyroid levels came back "within range" but I noticed the tsh was the lower side of normal. T4 came back in decent shape it was about slap bang in the middle. So not sure what has happened!
Is this a private consultant on Harley Street? If so I am hoping to have my ultrasounds sent to him too for review. I really hope it all works out for you I am sending nothing but positive thoughts your way. Id love to hear updates - I'll be sure to post any updates here too so that others might benefit. How long have you had your goiter?
I think it’s the same consultant private that works at uclh you should be able to be referred to this hospital on the Nhs by your local ent rather than have to pay for it yourself - I am currently going through this also and have just contacted the coordinator there. Waiting for an appt to do a second FNA that can go with my referral
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