I'm having round 2 today, and so far round 1 has led to a 44% reduction.
Hi guys,
Yesterday I was the 5th person to have radiofrequency ablation (RFA) within the NHS in the UK. This only works for those with healthy thyroid but benign nodules, so if that applied to you read on.
I had to fight to get referred, as I've been deferring surgery for 10 years to removemy left lobe. I am borderline hyper, but its controlled by a healthy diet and much soya intake (I'm lactose intolerant). However, my largest nodule got to over 4cm and they said I couldn't defer surgery anymore because it was compressing surrounding structures. I asked about RFA, which my hospital trust dont do. However, I knew it was an approved treatment from reading NICE guidelines. So my surgeon unwillingly volunteered that if I could find someone in the UK he would refer me. After unsuccessfully contacting NICE, patient England, and the thyroid association I eventually stumbled across a pdf written by UCLH.
My consultant in local trust begrudgingly wrote a referal in a sarcastic tone. However, undeterred a consultant arranged an appointment and while I was there adopted me and also arranged a consult with a radiologist who is one of two at their hospital. I passed the vetting for the procedure, and yesterday had the treatment. It was also watched by radiologists in Reading who are looking to add this to their services..and this treatment will soon hopefully be coming out across the country.
Developed in Korea, this treatment is widespread there as it is more aesthetically pleasing than surgical scars. With an aging population, there is less risk than surgery.
So..yesterday I was given local anaesthetic in the thyroid area and then treatment performed by guided ultrasound. The process is that a needle is inserted into the nodule and the tip is heated until the area treated pops (and there is an audible popcorn sound to everyone in room). It can get uncomfortable, particularly when it affects any nerve endings and you can get jaw pain/trachea pain but it is completely bearable. You can and will talk through the procedure.
It felt swollen afterwards and sore but today, 24 hrs later is mildly so. Within 1 month the nodule should have reduced by 50% and up to 90% at 6 months.
The treatment may not be suitable for everyone, particularly those who would benefit more from lobectomy with identified thyroid disease, but if your TSH is normal, nodules are large, benign and well defined this is an option worth looking at.
A good start would be to talk to your consultant and radiologist consultant about it, to see if it is suitable before trying to get referred. Training is now happening, so Trusts will begin to be able to offer this across the country.
Edit: In my case, the nodules in right lobe werent suitable for this but I have no compression issues with those. Also, Im about to undergo spinal surgery for 4 collapsed cervical discs so..having too many surgeries on neck can complicate matters..
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Scoobyslayer2003
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Thank you for all that information. It is something I may need in the future as I have a multi nodular thyroid. Not suspicious but I can feel the lump. Val
Hi Val, Have you ever had a scan done? Ideally they should be monitoring any large nodules, once per year with an FNA biopsy if any suspicious features seen. I have been scanned every year for 4 years since my largest was 2.5cm. Anything over 4cm tend to cause concern but usually fine if the edges are well defined. I am multi like you, but now very much looking forward to mine being broken down and a less chunky neck
Hello Scoobyslayer Thank you so much for sharing your experience with RFA, how are you after 3 months? I m looking into it for myself and I did not know it was available on the NHS. Would it be possible to have the name of the consultant that uses RFA? I might have to go through the same journey as you... Thank you very much Barbarao44
You will need to be referred by your consultant to a thyroid surgeon and you will need to be a candidate to get RFA. The nodule has to be distinct, well outlined and most importantly benign or you won't be referred on to it. A recent biopsy needs to have been taken and there will be other criteria as to why you can't have surgery.
I can't refer to consultants directly because of posting rules but you only need the dept and have already gone through the above.
I was in a position where they had to take thyroid out due to size of nodule. I am also undergoing a second surgery for cervical disc ruptures and they go in at the same place and one surgery would cause issues with the other. On top of that I have a rare genetic disorder that prohibits me from having normal general anaesthetic so that further complicates things.
Best place to start is with your local consultant as UCLH are training other radiologists across the UK during each week. Reading hospital radiologists were present at my first session.
At some point for me, the other nodules that could not be treated may turn cancerous or grow so this is helping me avoid 2 surgeries on neck within a short timeframe but making room for one to go ahead while the thyroid is being made smaller via this procedure.
Wow, my story is extremely similar. After fighting like crazy for my treatment I now have an appointment for the procedure at UCLH in just three days from now. I am a bit nervous but not even close to how I would have felt if I were to go into surgery. I am convinced that in years from now surgery will be obsolete for cases like ours. I can’t really get over the fact that if I were to listen to my ENT consultant, I would have had to live for the rest of my life without half of the thyroid and on medication. Wishing you all the best.
Been trying to find someone who has had RFA treatment, so if you can keep me updated it would be great.
I have thyroid nodules which are making me feel unwell, bloods are normal. I’m going to a the consultant this week to ask about being referred for this treatment.
Any advice you can give. Did your nodules cause you to feel ill?
If you see your consultant, print and take with you some evidence suggesting that the treatment is available on the NHS. Like this for example: uclh.nhs.uk/PandV/PIL/Patie... or the NICE guidelines. Otherwise, be prepared to be told it’s not possible, because extremely few ENTs in the UK know about this treatment.
Other than that, good luck, I don’t know what sort of nodule you have but keep in mind that RFA is not suitable for all types of nodules, a team will have to assess your case and ideally it should be the team that provides the RFA treatment because they know best.
My nodule was growing in size and each time I had it aspirated (mine was cystic) I was noticing a difference in how well I could swallow. Other than that, no symptoms in my case.
I get my treatment tomorrow; I might open a separate thread on this platform, detailing my experience so keep an eye for it.
Hi scoobyslayer2003,,do you know where in Manchester uk do the RFA?? I have benign large nodules and wanted to ask for this procedure.Many thanks hope all is still good with you .
Good morning. So, you are having the second round. My procedure is meant to start around noon. Good luck with yours, hope it will reduce the size of your nodule even further.
Hi, Scoobyslayer2003. Mine went great too, I woke up this morning and I don't have any sort of pain unless I poke it. Pretty amazing. Good luck, hope yours shrinks as much as you're hoping for.
Good news. Hopefully another 2 cm down on mine by end of next 6 months. I'm a little quiet/hoarse as they had to get quite close to vocal chords yesterday. Gives me an excuse not to have to do conference calls today
Hope you'll keep us posted if you have the time, I will start a separate thread as things progress with mine, I know there are more people interested in this. I was very slightly hoarse too yesterday plus had some pain but it all disappeared by today. Rest your voice and it should heal. My mum had full thyroidectomy a few months ago and they injured her vocal chords so badly she couldn’t speak properly for at least a month but now it’s all back to normal.
I was so thrilled to read your post on here and hope that you can be in touch again, even though this is an old post.
I have a normally functioning thyroid gland with a multi nodular goitre now for 17 years which has slowly but progressively enlarged. It does not give me any physical problems, although I am now very conscious of it as it is clearly visible at the base of my neck. This does give me considerable distress and I don't feel attractive with it and so dress to try and hide it.
I have never been offered biopsies of my nodules as in my Consultant's words 'there are just too many nodules' and so they wouldn't know which one to (s) to biopsy and at the time of diagnosis, he said they were benign and would grow over time (which they have). He said that at some point I would probably need surgery. This threat/worry has hung over me therefore for nearly 20 years.
I have had my thyroid regularly scanned over the intervening years and none of my nodules have malignant features and have clearly defined margins etc. The largest is now over 4cm. There is some evidence that my goitre is beginning to grow downwards but without any evidence of compressive symptoms etc.
Back in 2003 I was offered the choice of a Thyroidectomy or just watchful waiting and scanning and I opted for the latter.
I know many people are frightened of medical procedures but I suffer from extreme health anxiety and panic attacks and Just can't face the surgery itself (I know many people face much worse). I do feel however, increasingly disfigured by my large goitre.
Since your initial post on here 3 years ago {only just read today), I wondered how you had got on with your nodule shrinkage? Did you too have a multi nodular goitre?
Also is there anyone else on here who has had a multi nodular goitre shrunk by ablation treatments etc and if so where? And can ablation be used to help shrink resternal goitres?
When I look on the British Thyroid website thyroidectomy seems to be the main treatment of choice and there is no mention of newer treatments. Why is this, when they have been approved by NICE? My GP has also never mentioned any new treatments to me, I have just stumbled on this by pure chance.
I would love to hear from anyone who can help me potentially access treatment for my goitre which is less invasive than surgery. e.g. have any other NHS trusts come on board to offer it/make it more widely available?
You might like to start a new post asking about recent experiences treating thyroid nodules with RFA. As you have so many nodules and being resternal it might exclude you from being a candidate. Usually a recently biopsy is a requirement as it’s not approved unless proven benign.
You raise an interesting point in term of trusts making it more widely available.
I do not see many posts referencing RFA, of the handful of people that have previously posted about personal experiences most have had successful outcome. It seems repeat procedures are often required. I also know of a poster who had adverse reaction to the way the local anaesthetic was administered but complications can occur with any procedure.
Most hospitals have not set the protocol in place to refer patients to a hospital which carry it out. (I have found 2 NHS hospital which do, there may be more) I have heard of doctors saying there is no funding stream for it, and patients have had to collate the information themselves, contact CCG for guidance of what treatment can be funded ect, in other words battle for themselves to be referred and treated.
I am in a very similar boat to you, I have just been referred for hemithyroidectomy surgery and have a lot of anxiety about it. I've really felt hopeful finding these posts and am just starting the process of trying to get a second opinion for this procedure
I have a non toxic goitre that has got bigger over the last few years and is starting to compress my windpipe. I would like to join the new thread on this, can you link me? First time posting here too after reading for a while.
For me, I was choking on foods, my voice changed, high neck clothes irritated me, but my nodule was large. You see the outline of it, and people used to ask about it.
I have been having it monitored (watch and wait) at hospital over the last two-3 years. My last scan showed it was just above the sternum but was pressing on my trachea quite a bit. Was told needed surgery and then I found the stuff on here about ablation and have been trying to find out more since, very early days yet
thanks for all your useful information, I am just beginning the process of asking for a second opinion and it's so helpful to have these links at the ready.
Thank you for your update. Please let me know how you get on with this.
I have been doing some research and have not found many NHS hospitals that do non surgical techniques for goitres. The Royal Berkshire is one and there is a Consultant in London who will do a private appointment to assess prospective candidates for the ablation procedure.
When i first read about this I was overjoyed as I have lived with my goitre now for nearly 20 years and it has got slowly but steadily bigger. This does cause me great distress. The ablation seems to work on smaller nodules best, rather than larger ones within goitres.
Mine also has some retrosternal extension and I have read mixed reports on these types of goitres. Some Consultants overseas say they are not suitable for non surgical treatments; whereas in Italy, I have read papers where patients have been treated and their goitres have shrunk with amazing results.
I am holding fire at the moment on this because of the Covid situation. I’m also apprehensive about upsetting the apple cart as it were , and being forced down a surgical route , when i have lived with this now for so long.
The relative lack of response on this issue ( non surgical techniques) within this Forum and also the lack of updates on the national NHS webpage for the treatment of nodules non surgically, makes me think that general awareness of these new and emerging technologies and treatments isn’t yet widely known. The last time I looked, the British Thyroid Asso had also not updated its information leaflets on the treatments available for goitre/ benign nodules.
I really hope in the future that such new treatments become more widely available in the future even for those with substernal extension as they could revolutionise the treatment of thyroid goitres.
In the meantime, please let me know how you get on with your own research on this and if you find anyone who can help you.
Hi just read this and wondered which London hospital you had it done please and name of the doctor if possible! How are you and did it work well? Thank you.
I believe there are only 2 NHS hospitals in UK are doing RFA on thyroid nodules. Berkshire & UCLH university college London hospital. They are a group of London hospitals - university college hospital being the one with the patient leaflet.
Unfortunately the poster saying they had treatment there a year ago, hasn’t been back since. (Which hopefully means they’ve not needed more help / advice) 😊
I've finished the treatments with UCLH 18 months ago, they got all of the nodule. I have 30 other small nodules, but they aren't a concern and RFA will not work for those yet. My bloods have shown antibodies at 4x times more than upper normal but no treatment required. My voice is better, and swallowing is fine again. Thyroidectomy would create a couple of issues for me, so at least we have avoided that for now.
Hi were you local to ucla hospital? How did you manage to get referral on the Nhs my ent surgeon in Yorkshire said would refer me to anyone but I think he thought I meant a private clinic but I can’t afford it I wanted to have this done at Nhs hosp as I’m too scared for surgery. Have a 5cm benign nodule and thyroid is normal . Tia
Thank you for responding I’m hoping I am able to do the same then. Fingers crossed - I will Get in touch with them next week. Have you had a good response to the procedure? I think your first post was 4 years ago so has this meant your nodule is now smaller?? Many Thks
Hi Clarabell, My nodule is completely dead, it didnt shrink all the way, I now have a black hole in its place but it did shrink by 60% during treatement. I recently had a scan because the lump could still be felt and I was having overall thyroid swelling which made it more noticeable.
The scan I paid for privately (May 21), but you could see the black hole. The private consultant checked back to my UCLH notes and confirmed all was ok and nothing was untoward there.
That’s good to know thank you so assuming any symptoms you had with your nodule prior have disappeared as well then. I have some compression issues a noticeable Unsightly lump in the throat And some choking And tightness issues. It’s difficult to lean my neck back like at dentist or hairdressers so keen to see shrinkage to lessen these. Sorry you had to pay private for a scan though that’s rubbish thanks for your advice though it’s encouraging
I remain encouraged Sccobyslayer at your nodule shrinkage and that you have had two sessions to achieve this on the NHS.
With the Covid pandemic over the last 18 months, I have not pursued RFA further for my multi nodular goitre. It does have retrosternal extension. Clarabell, does your 5cm nodule have this?
More recent studies I have read, do report treatment of nodules with retrosternal extension . Some also treat just the dominant nodule in the multi nodular goitre. Others report that sometimes when the visible ( on ultra sound) part of the nodule is ablated and shrinks, it ‘pulls up’ the retrosternal part.
I have also read that RFA can be used successfully with MWA and ethanol ablation techniques.
I would appreciate hearing from any one with a MNG or nodule with retrosternal extension who has been successfully treated in the UK, particularly on the NHS.
I remain very anxious about my goitre and potential thyroidectomy.
Hi I had a chest X-ray last sept and it didn’t show up as retrostenal it’s more across my throat from left to middle so hoping it doesn’t grow down I have another ultrasound on Wednesday to see how it’s changed if any since October 2020
That is encouraging Clarsbell. Please can you remain in touch and let me know how you get on both with your scan and also if you do access RFA? Wishing you well.
I managed to get in touch with the coordinator yesterday at uclh and they confirmed there is only 3 Trusts in the uk currently doing this one is them royal berks and Bournemouth. Birmingham and Newcastle are meant to be launching soon ? Uclh Have 2 consultants that do it and will accept a referral with 2 FNA results done from my local ent surgeon
Hi Clarabell333 , my situation is so so similar. and RFA was really to light for me. I stumbled across this procedure when I first noticed the nodule in dec 2020. What was your FNA result? Mine is a U3 and I'm not sure if I'm classified for RFA
Hi Clarabell, do you know which hospitals are likely offering thyroid RFA? I’m trying to get a referral through to anyone as I had one sent to UCLH but did not hear anything back - when I followed up it seems they have closed their doors to RFA. (Maybe a consultant change?). Anyway, if you can remember which hospitals are doing RFA that would really help me out. Thanks.
The hopeful bit of news is the reported aim of a project to consider how well the procedure is working and whether it is safe enough to be used more widely in the NHS in the future.
hi I think the other one was Brighton or Bournemouth I can’t quite remember but I know uclh just said to me last month they’ve paused doing it for now as I think they are focusing so much on general nhs waiting list backlog as they have so many targets to reach in other areas for ent that doesn’t include this type of procedure which I said to them was really unfortunate as it’s really helped me. I only had my follow up a year to the date of treatment and I’ve had a 56% volume reduction so from 5.1cm craniocaudally to 3.3cm cc and as it’s not symptomatic anymore so won’t need a second treatment just yet anyway. They no longer have their coordinator as she left to move back up north so I think that’s also been issues in staffing and those skilled to do it. My contact info for future queries is now
Uclh.referrals.imaging.secretaries@nhs.net
If that’s useful so you can ask in future if they have restarted them in a few months?
Hi I accessed the rfa treatment finally had it yesterday sore today but it went well they said - may need a second treatment as it’s so large but will see in 6 mths
I have a 5cm hyper nodule. Procedure is not done locally to me and would be difficult to travel unfortunately, especially as it would likely take several visits for assessment, the procedure & follow up.
I had a FNA (thy 2) but that was several years ago now.
Hi my latest measure US Scan was 5.48 cm and I sought out the treatment myself finding this post was one of them. I asked my ent surgeon to refer me and that they had to do a second FNA to make that referral. Both of which were thy2. I am 3 hours on train away from london so def not local. I had one day trip last week for consultation they did a 3 rd biopsy and US and discussed procedure i then returned for another day trip and had treatment yesterday. I am lucky enough to be able to fund my travel to ensure I got this treatment. They will do a follow up US in 6 months and perhaps may need a second treatment due to it being so big
Hi Clarabell, I had two treatments so I think you'll maybe need another, like me. The second one was remnants of tissue, as most was fried at the first session.
I did also have 2 US appointments, a telephone appointment with the thyroid consultant, 2 bloods appointments (one was done locally so ask if they can send to GP to dave you travelling if this is required).
Glad you are feeling ok, soreness should settle down quite quickly. Then you can enjoy having a semi normal neck again!
Thank you for that, yeah it’s no worse today so hoping it’s going in the right direction just every yawn cough or swallow reminds me of it but just snoozing it off haha feels like I’ve been a bit strangled as right above the clavicle and against my windpipe but tolerable ! Can’t wait for swelling to go down and start seeing results !!
Thank you for that information. How many sessions did you require to remove/shrink your nodule? And was any of it retrosternal to be causing compression symptoms?
Also were you out of area for UCL or a local patient?
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