Hi first time posting and trying to understand even some of the basics - have been juggling between private and NHS consultants. In July this year I was diagnosed with multi nodule goitre (left lobe measured 8.51cm x 4.70cm x 5.13cm and right lobe 6.71cm x 4.37cm x 4.37cm - well defined sponge form). More recently (October 2022) left lobe had increased 9.01cm x 5cm x 5.15cm and the right lobe was the same. Advised these to be benign. My ENT doctor has said I have the largest goitre he has seen. I have been urged to have surgery with total removal of my thyroid. I don’t want surgery and have been research RFA treatment. Any advice for direction would be greatly appreciated.
Advice re RFA treatment : Hi first time posting... - Thyroid UK
Advice re RFA treatment
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Levi1959
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PurpleNailsAdministrator
Lots of people have reported hospital specialists denying it is a potential option and refuse referrals saying for example “there is no funding stream for it” I do know of Patients who have battle for referral after providing the information.
I’m told 2 Biopsies 3 months apart are required (local hospital may be able to complete). Then the procedure appointment - then likely need additional follow up. So you would need means to travel several times.
Thyroid nodule/s 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 but if there’s a high chance of reoccurrence - with multiple nodular conditions doctors often suggest it’s not best solution.
Nice guidance
NHS Hospital, patient leaflets Royal Berkshire
royalberkshire.nhs.uk/patie...
UCLH also have a patient leafletuclh.nhs.uk/patients-and-vi...
Research articles.
ncbi.nlm.nih.gov/pmc/articl...
pubmed.ncbi.nlm.nih.gov/195...
British thyroid foundation information on less invasive treatments.
btf-thyroid.org/less-invasi...
Past posts
Sharing my Radiofrequency ablation (RFA) for benign nodule experience at UCLH
healthunlocked.com/thyroidu...
Round 2 Radiofrequency ablation (RFA)
healthunlocked.com/thyroidu...
Discussion on RFA
healthunlocked.com/thyroidu...
Private clinics
This clinic states it’s the only private clinic performing the procedure.
onewelbeck.com/endocrinolog...
However, there’s another clinic referencing it too. London & Essex (the clinic may even be part of same group of have an connection)
phoenixhospitalgroup.com/ou...
There were further links to other private clinics, but the information deviated from RFA on thyroid nodules, referring to RFA to treat other issues or other forms of treatment.
I’ve no personal experience of dealing with either clinic or any private clinic.
Thank you so much for this information it is greatly appreciated. I will research these links straight away
Hi many thanks again for your previous message - I am hoping to get RFA treatment from Phoenix Hospital Group which was in your message. I have obtained my blood test info from October 2022 and wondered if this tells me anything ? your thoughts would be greatly appreciated TSH. 0.05
T4. 12.1
T3. -
Creatinine. 79
Urea. 5.6
Chloride. 102
Potassium. 4.9
Sodium. 139
GFR. >60
Can you add lab ranges for each test. Ranges vary between labs so very important to interpret results exactly.
Were you previously hyperthyroid? I can see TSH is low, but TSH can be unreliable. Free T4 & Free T3 levels tell you where your thyroid function is at. By most levels FT4 is low. Testing FT3 important.
Test privately if necessary. Do you currently take any antithyroid such as carbimazole? or any replacement?
Creatinine, Urea, Chloride, Potassium, Sodium, GFR aren’t usually part of thyroid testing. Were any other tests completed?
Here’s a list of companies offering different options, some packages include thyroid function, key nutrients and thyroid Antibodies (Medichecks advanced thyroid) Others a basic function only. (Monitor my health) Some also have discount codes available.
thyroiduk.org/help-and-supp...
You order test online - the kits arrives via post - sample can be taken by finger prick (extra fee for private venous draw). Post back and results available online usually quite quickly.
Need to be careful to avoid weekend and postal strike delays.
Thyroid test should be taken just before 09.00 & the replacement dose should be delayed until after draw.
Supplements containing biotin needs to be left off 3 days before test longer if high dose. Biotin can interfere with test.
We don’t get a lot of people posting about RFA. Any details of the process & investigation so far will be of great help to others.
Does Phoenix group scan thyroid to assess, compete FNA or rely on previous a samples.
Hi PurpleNails and once again thank you for kindly taking time out to reply. I apologise for being 'thick' on this but I am only just starting to understanding even the basics. Here are the ranges I hope they make sense and what you were looking for;
TSH. 0.05 0.27 - 4.20
T4. 12.1. 12-22
T3. - (pmol/L)
Creatinine. 79. 59-104
Urea. 5.6. 2.5-7.8
Chloride. 102. 95-108
Potassium. 4.9. 3.3-5.3
Sodium. 139. 133-146
GFR. >60. 60-150
CT Scan results; goitre 10x10 cms
Left lobe: 13.5cm in craniocaudal dimension. 8.9cm in AP dimension and 6.3cm in transverse dimension.
Right lobe: 11.7cm in craniocaudal dimension. 5.9cm in AP dimension. 5.6cm in transverse dimension.
Re RFA I am hoping to hear back today if Dr Morley will take me on for treatment - my fear is that because of the size of my goitre he may not although I have stressed that I am not looking for it to be eradicated or even anything like some the reduction percentages I have seen cited online but that I want/hope to avoid the need for surgery and that it can be contained/managed for the rest of my life and for me to be comfortable. Despite all concerns from the 2 private and 1 NHS specialists I have met with here in Northern Ireland I to date have not suffered any real discomfort whatsoever. However, if I eat glutton or sugar my neck does swell considerably which in turn creates pressure and I can feel discomfort occasionally - went a bit mad over Christmas and that scared me quickly in reverting to eating glutton free etc.
I wondered also if having COVID may have started / contributed to symptoms - I am unvaccinated - COVID first in Jan 2020 (pretty bad for 5 days) and then again in May 2022 (failed test but felt fine). Guess that will be an 'unknown' but have seen quite a few references to this online.
I got some real comfort and better understanding of RFA through this video I watched youtube.com/watch?v=b6oQKCE... and this is the UK Dr at Phoenix Hospital Group
I hope this all makes some sense and hopefully the link will be useful to anyone exploring the possibility as an option of RFA.
Thank you once again
PS. Ordering test you suggested today
Thank you for video it is very good. I’ve read about RFA procedure but never seen video of it performed or the scan image of it, very interesting.
Your thyroid result are abnormal in that the pituitary hormone (TSH) which signals the thyroid is low. The TSH (thyroid stimulating hormone) reduces when thyroid hormones are high in an attempt to reduce the thyroid producing more.
You expected to see low TSH & high FT4 (& FT3 if tested) but your FT4 is only just in range - so very low. Knowing your FT3 would help as FT3 is the stronger active thyroid hormone . If equally low you likely have hypothyroid symptoms.
You don’t say if you take any form of treatment but if you have previously been hyper the TSH is unreliable and your treatment needs adjustment to raise FT4.
If you never been on any treatment low TSH & FT4 needs further investigation.
Multi nodule goitres (and solitary nodules) can occur without autoimmune but often both nodules & autoimmune occur together so you should have thyroid antibodies tested if not already done so.
Many with thyroid autoimmune report issues with gluten. Viruses including covid have often been reported to trigger thyroid issues.
Info about antibodies
TPOab (Thyroid Peroxidase antibodies)
TGab (Thyroglobulin antibodies) - These signify autoimmune - both under active & they also appear with hyper. These are often included in more in-depth / complete thyroid options.
Thyroid-Stimulating Immunoglobulin (TSI) TSH receptor antibodies (TRAb)
Positive TSI or TRab are evidence of Graves hyper These test tend to be more expensive / specialists tests.
Hi just a quick update - The Dr I was hoping to consult with is no longer doing RFA - I'm trying to get further insight as to the reasons why (safety / funding etc.) however I am reading increasingly that (especially in the US) the insurance companies are resisting as less beneficial financially. FYI I have found through a former patient who has quite an extensive website / youtube Dr Thyroid someone of interest who I am reaching out to in Italy youtube.com/watch?v=MaIeaIo... his website is interest and includes his rates and robertovalcavi.com/en/
Hello I have just joined and am also searching for either NHS or private RFA treatment for my thyroid gland. I'm so very disappointed to see that Doctor in UK private clinic is a dead end. Keep posting if you get anywhere as will I .
I just returned from Italy for first session of RFA - the doctor is truly amazing. Absolutely painless procedure - looks like a mosquito bite where the needle was inserted and worst pain on both procedure and pre-op biopsy was taking the plasters off afterwards !!!
Performed ablation on left lobe (measured 13.5 cm) and isthmus. Right lobe is 11.7 cm and will be for second ablation.
I have experienced zero pain since procedure (17th February) and already noticeable reduction in swelling and significant improvement in mobility of neck and easing of tightness experienced.
Cheap flight via Ryanair or Easyjet over there and found a great B&B close to Dr Valcavi private clinic. I have to say that I am the world's biggest coward re needles / pain and have never been in hospital (I'm 63 years old) - I have absolutely no worries whatsoever about the second procedure (probably in about 12 months time) ..... Dr was very gentle and explains everything ensuring he doesn't move on until you completely understand - and I still have my thyroid and not facing pharmaceuticals for the rest of my life ....... hope this is helpful
Glad you come back with an update.
Thank you, we don’t hear enough about experiences with this procedure.
Sounds all very positive, I hope the next visit goes as well.
so pleased for you and a very useful post for me in my current anxious state
Hi, doctors here, both private and NHS, have refused to treat my benign goitre with RFA as my goitre is multinodular. Thanks for posting the information. I will seek an alternative to surgery as I have lung disease as well
Hi Sandy555 firstly so sorry for slow reply I'm only just seeing your message. I had to go to Italy for treatment on my multi-nodular goitre - my main issue was that RFA was never offered as an alternative by any of the 3 private or NHS specialists I met - if it was their opinion not to go that route that would be their prerogative but they should have offered it - in my view. Good luck in the journey.
Hi I am looking into RFA can I ask what information you had to send to get the ball rolling. Also if you don't mind me asking, the cost of the procedure? Good to hear it went well for you 😊 Tia
Hi Miranda4243 again sorry for my late reply only just seeing your message. I wanted to stay away from thyroid removal along with lifetime of meds - RFA was never mentioned to me but I found it online - initially I tried a UK private specialist but he later moved away into another field (and I think more financially lucrative area). Much of the resistance to offering RFA I have since learnt is that the insurance companies don't earn so much because the procedure is considerably cheaper than existing offerings (this is especially relevant in USA). I have now had my first procedure and will have second in October or November - this is because my goitre was the largest my doctor had ever seen - and he's done 1800 RFA procedures !!! So depending on size etc yo may only need one procedure. Cost was about €4500. There are cheap flights to Bologna / Milan and cheap B&B close to the clinic. I cannot speak highly enough about the doctor and his team - I am the worlds biggest coward (injections / pain) and at 63 years old have never had a hospital procedure - the worst I experienced was a tiny mosquito bite size 'scar' and the plaster hurt more than anything when I removed it !!!
Hi, I am also looking for RFA treatment.I am 40 and have 6cm nodule.I have been given option for surgery from NHS but I want to consider RFA.Please help me where I can get this done in UK.
collect as much information as possible & ask endocrinologist for referral to Berkshire or UCLH, these 2 NHS hospital list the procedure (some info above)
You might have to find a way to push for it, expect doctors to try and brush it off or say they don’t have procedure in place to a referral……have the information ready.
Let us know how you get on.
Hi ThyroidGuest I am not aware of anywhere now where RFA is available - I had to go to Italy but if you can afford it (and not expensive especially given the alternatives) it is a great option. My objective was not to have my thyroid removed and maintain good quality of life for the rest of my life without need for meds.
hi there I have been referred to Royal Berkshire for RFA but still awaiting confirmation that I am actually on a list. My nodule is 5cm got a lot bigger. I’m on a low 5 mg dose of carbimazole since 2019. I was told by Royal Berkshire that they are taking out of area referrals though a private consultant had been informed they had closed the clinic ! All very frustrating. I’ll update if I get more clarity .
Frustrating you been told different things. Hope the referral is confirmed soon. Did your specialist agree to refer you?
Hello there and thank you for your attention to all these posts. I am so impressed with this website and the administrators. Yes it was strange as I saw a Dr privately as my endo would only consider removal and he said that he had had an email from Royal Berkshire the WEEK BEFORE to say it was not operating a clinic Then my husband beavered away on the internet following all leads to RFA and got a reply to say they were. I then asked the private Dr to refer me which his sec says he has done. I will be chasing this up next week. I had a scan done privately which was not very detailed to be honest and then as my appt for an NHS scan had come through I did that and felt it was more detailed so I have sent this to Dr to send on to Royal Berkshire. I await direct contact from RBH thank s once again
Hi Celticfiddle,
Not sure if you heard anything back from RBH. I called them this morning, but they said they are on hold for RFA, doesn't seem I can ask my GP refer me to there.
Also contacted UCLH before, they're not doing it as well. Very frustrating at moment.
Thanks
Hi Bakertian how annoying and worrying for us both. I rang them about three weeks back to find out if my referral was received and eventually a lovely admin lady on radiology dept found my referral from the private consultant that I had seen. She couldn't give me a time frame for treatment and suggested I wait a few weeks to get a communication even to say I was on a list !! . They also have a private route at RBH and I was advised it would cost about £5000 .
Hi Bakertian just to update you. I have had a screening appointment at Royal Berkshire for RFA and hope to get procedure done in October. So the service is there on NHS not just privately.
That’s good news. Thanks for the update. Good to know they do carry out the procedure. If private doctors can make referral, wonder why NHS doctors won’t?
Hello PurpleNails
I agree completely upside down and back to front. My GP felt it was outside of her remit . When I see her next I will definitely stress to her that she is able to refer at GP level.
I think that may be the same specialist I tried to go through, (Phoenix Hospital Group Private Clinic). This dr was based at University College Hospital London - I'm sure I was told they were linked to Royal Berkshire also but unfortunately they no longer undertakes RFA.
Thank you for your reply . I had email confirmation from sec to the clinic that it is taking referrals out of area, I asked her to double check due to the confusion and she said YES my GP could refer me , My GP didn't feel she was authorised to refer me. So far I have no mention of Dr which I had read from your earlier attempts to do it in the UK has stopped his clinic. The web can be very frustrating and not up to date
I found this link rfamd.com/ really useful and they linked me to the specialist I used for my own RFA procedure also this youtube youtube.com/@DoctorThyroid/... has lots of good content - hope you don't think I'm being too 'busy' just I know how difficult it can be even trying to explore 'outside of the box' options
not at all i feel supported by your interest and at the back of my mind Italy beckons. My main reason for pursuing RFA was that I felt I had been on med for 4 years my nHS endo wanted to take my gland out and following a stressful episode the palpitations that I had been having for some time were over riding my day. All this has calmed somewhat but I can't handle any stress at all and feel fragile and rather pathetic !
Totally appreciate your position - I think I noted previously I'm the worlds #1 self confessed coward for anything relating to hospital, needles or pain generally !!! I cannot overstate how great Dr was specifically in this regard and I felt nothing during or after the procedure - 3 months on and I feel so much better aside of the obvious reduction of goitre, better breathing, greater mobility etc. Given the size of my goitre I will go back to Italy in October for second procedure to deal with the other side. I would recommend you email Dr at the clinic (link below) for their opinion - they wouldn't charge for initial communications - and what harm could it do ? The website is also really useful robertovalcavi.com/ I'm not pushing clinic but just speaking from my own personal experience - my main objective was from the outset to keep my thyroid and maintain good quality of life without needing to take pharmaceuticals for the rest of my life - despite the size of my goitre this, so far so good, has been achieved through RFA so, in my opinion for what it is worth, I don't understand why doctors / specialists would not offer it as at least an option for consideration .
Thank you so much for your comment and time replying to me. I was wondering how you felt now that you have had this done. I have no idea how much of my chronic health problems and weird symptoms are down to being hyperthyroid or not. I initially was hypo thyroid and have Hashimotos then I went Hyper and have Graves and prior to both had adrenal issues . I am interested when you mention your breathing is easier Once again great to get your reply .
Mindful that my goitre was huge so needing two procedures so full benefits have not yet truly kicked in but in terms of quality of life I don't need to see a doctor to know the massive improvement - breathing is pretty much back to normal and I'm confident after the second procedure that will be fully restored - I was shocked to find out that I had this thing for 30-40 years which starts to make sense when you rethink many of the issues you may experience - for example for the longest time I have had a weakness for itching - lived in Caribbean for some years and had lots of mosquito bites which I scratched and scratched as well as certain areas (back of my left knee for some reason) but since RFA absolutely nothing !!! My vision has improved significantly also - I no longer need glasses. I'm not saying RFA is a miracle or solves all ailments but again from my own experiences these are the things that I have noticed. And if some of those things are all in my head then I don't have a problem with that either. As I said my priorities were to keep my thyroid and enjoy med free quality of life and for that alone I am 1000% satisfied with RFA.
Thank you for so much information on this doctor in Italy. I do hope you are doing well now. Did you pay separately for the 2 visits or one price for both? And how much each time or for both please? Can my GP refer me or do I need a private endocrinologist? I have a NHS endocrinologist, but he says there is nothing in the U.K. Thank you.
I suspect they would be separately paid for treatments. As it couldn’t be predicted if subsequent treatment would definitely be necessary - only suspected. An additional visit would have to be arranged and that might not have been planned in. I could be wrong, I hope Levi come back with advice & an update.
The overseas clinic discussed has a website which is included in above information, I know Levi has said previously said queries can be made directly to the clinic. You would be fact finding not committing yourself to attending for treatment.
I heard many say doctors / GPs initially said no option of this treatment. What they mean is = no set procedure is in place. Keep asking & pushing for them to make enquires & make a referral. So don’t give up.
If you start your own post with your history & current results members can offer advice specifically to you. (& properly welcome you). It might also be there are options or other ways to help you which we can’t tell you about & you’ve not thought to check. So a post seeing if others have advice regarding your situation is always a good idea.
Yes you are right I should start my own post, thank you. Would be good to find out if the drs doing RFA in the U.K. are as thorough as the ones elsewhere with cleanliness and pain relief etc.
Hi I didn't need a referral in fact my NHS and UK private specialists experience were completely void of any insight into RFA and only focused exclusively on urgent thyroid removal. There was a pre-op charge of €380 for blood work and consultation and this took place 3 days pior to the procedure. Total cost for my RFA including pre-op was €6,180 and I paid deposit on booking of €1,850. When I go back for my second procedure it will be less (€5000) and not necessary for 6-24 months after the first procedure. You can pay with credit card after the procedure or bank transfer. They monitor you for about an hour afterwards and then I drove back to the hotel with no adverse effects - I did sleep well that night !! I returned to UK 2 days later. Cannot recommend RFA and Dr Valcavi highly enough and as I have noted before I am the worlds biggest coward for pain and anything medical and this entire experience was a joy and painless, I feel great now with none of my prior conditions remaining. I had meds to take for 4 weeks (Inderal, Lansoprazolo & Metilprednisolone - I was also given painkillers but never needed them) I have recently had a CT Scan on NHS and it shows a 60+% reduction in the lobe I had RFA on. There is zero scarring. Dr Valcavi is confident after my next procedure I will have a minimum 80% overall reduction which has by far exceeded my hope/expectation and of course I still have my thyroid !!! For reference Dr Valcavi has done over 1500 RFA procedures and I had one of the largest goitres he had seen. I hope this helps.
Hi, thank you so much for getting back to me. You have been really helpful. Sounds like the place to go! Sounds like you have made the right decision. So glad you are doing so well. Did you have to ask for a CT and was it easy to get? Would an ultrasound have not been clear enough? Just wondering why you had a CT as they are more invasive maybe.
The NHS specialist was so fixed on me having my thyroid removed he organised thee CT scan. Honestly I never wanted to follow that route (unless absolutely life saving) but thought it wouldn't hurt to continue their path so to have a second opinion - I didn't want to opt for the RFA just because it was what I wanted to hear (if that makes sense ?) so I think this gave me a clearer and more level mindset throughout. I am not a doctor or have any prior knowledge of anything medical - I did a lot of research online (not always the best I know) and ultimately really trusted in my own instinct - the information and rationale offered by the NHS specialist and two other UK private specialists I dealt with just didn't make any logical sense to me and only focused on the thyroid removal. As I have stated previously I don't have an issue with someone giving their opinion but not to offer the other alternatives was ethically poor in my view. The costs for the RFA treatment I went with in my view was cheap given the alternatives (and to be fair supported with me having lived in the USA for the last 18 years and their significantly higher medical costs). Regarding the CT scan it was my understanding that an ultrasound cannot provide the necessary insight into the density etc. of the goitre whereas the CT scan does and originally there were concerns that my goitre may had become sub-sternal encroaching into my chest so this additional info was useful prior to my procedure.
Thank you Levi for all this information.
Did you have to have any biopsies before the RFA? Or any scans you needed to send to Italy before making an appointment? I can write and ask all these questions at the clinic but thought I would just check with you as you would know!🙂
Only blood-work which I had done privately supported by copy of CT scan (if you're going this route obtaining your own CT scan via NHS can be lengthy and somewhat testing to say the least). If you are thinking of reaching out to Dr Valcavi I can say he's exceptionally helpful, patient and never once do you feel pressured or its about the money - he's website is quite useful and sets out fees. I would be happy to introduce you if it was of any help.
Thank you, good to hear you didn’t have to have a biopsy but maybe that was because you had had a CT scan? I’m now going to do lots of research on here and elsewhere and also contact Dr Valcavi. My nhs endocrinologist had suggested doing a up-take scan of my thyroid to see if I have just one nodule or many. But that won’t happen until after I’ve spoken to him again in February next year. I guess I could get a message to him and ask if I can have the up-take scan booked asap. Thank you offering to introduce me to Dr Valcavi, I’ll get back to you when I know more generally about everything!
Understood - check out Dr Valcavi's website to watch the procedure video working on multi nodule goitre (mine looked like the Milky Way !!!) . HealthUnlocked is such a blessing because you realise you're not alone - there are so many people going through this worrying process (I was terrified to be honest) and so many people there to offer advice or just talk abut their own experiences which all can help you make the right decision you make for yourself - if I can help with anything else don't hesitate to reach out and good luck
Uptake scans specifically show the function throughout the thyroid & and it’s usually requested if it’s suspected the nodule or nodules hyper function & you don’t have antibodies. Most nodules are cold ie do not function some autonomously function which is known a toxic, this would show high thyroid levels.
This is a great site for information on RFA and other non surgical procedures. It's on Facebookfacebook.com/groups/saveyou...
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