Hi Today the Endo I saw tried to persuade me into surgery to remove the whole of my thyroid. I have seen the newest treatments called laser ablation and RFA. HAS ANYONE out there any information on these treatments in the UK?
I mentioned these to him and he hadn't even heard of them and didn't want to even discuss this alternative treatment. He seemed set on surgery but I have no signs of cancer in any of the tests I have had. Please help if you can someone. Rx
Rachel, please read the links on this page. This website provides a lot of information because Mary Shomon went through a very difficult journey regarding her thyroid that many of us still deal with. There is a lot of good advice about this surgery.
Rachelvc, I've not heard of either. If they were available in UK I would be very wary of undergoing a new type of procedure unless the practitioner had performed a couple of hundred successful operations.
Cancer is not the only reason for thyroidectomy. If the goitre is growing into the sternum, or likely to impact the vocal chords or trachea, thyroidectomy may be necessary. If you are not convinced thyroidectomy is right for you do ask for a second opinion.
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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Ultra sound Laser Ablation is being performed in Italy California & USA. & I think France but still researching. U tube has a video of this very quick out patient treatment. Also RFA treatment.
Rachelvc, just been reading up and although thyroid nodules have been treated with LA and RFA I didn't see that it had been used to remove goitres. RFA doesn't remove thyroid nodules but shrinks them over months/years. RFA appears to reduce the size faster than LA, with the additional benefit there's no stench of burning flesh which happens with LA.
this is Ultrasound guided Thermobeam. As it is internal I doubt there would be any smells. Even so it is only brief and like a Sunday Roast! Lol
Rachel, surgeons are ALWAYS set on surgery.
If you decide to have the surgery please don't worry I had a full tt to remove an enlarged goitre 20 plus years ago, yes there is a long recovery period but I have never looked back. My thyroid was so hyper that the surgery was my only option. I am really lucky in that my scar is virtually unnoticeable and it has been opened twice as I had further nodules removed nearly 3 years ago and they reopened the original scar.
Good luck with whatever you decide.
As soneone else mentioned it already, a surgeon will always recommend surgery and if you go ahead, try to get someone who had many successful ones as parathyroid glands might, by mistake, br removed at the same time.
Rachelvc ,
There are quite a few papers about various forms of laser ablation (and the list might include some that are completely irrelevant):
ncbi.nlm.nih.gov/pubmed?ter...
Similarly for Radiofrequency ablation:
ncbi.nlm.nih.gov/pubmed?ter...
A quick glance suggests these techniques are more likely to be used on nodules, and other smaller volumes rather than whole or half thyroids.
Thank you that was very useful. It seems there is a lot of new treatments but none available on NHS. I do hope that changes soon as it would also be a lot cheaper as no hospital stay is required.
I am still searching for a UK based practicitianer.
Best of luck finding one. And, please, do post back with the story of your search and, I hope, successful treatment.
Why does it not surprise any of us that a thyroid specialist in the UK has not even heard of important and well established innovations in his own field?
Hi Thank you for your message. I only recently heard of it myself on the Internet. Ther obese and Ultra sound guided laser ablation in Italy, USA and California. I have asked my Endo to find out more as he was ignorant of these treatments. There is also RFA Radio Frequency Ablation.
I have just had Ultra sound guided aspiration of some cysts in my Thyroid so really think they should move forward to doing ablation as its so quick.
Anyway I have decided to hang on to my thyroid until new treatments unless they find something nasty.
Please tell me what NDT is ?
Yes very worrying
I contacted the American Hospital in Paris as they have one of these machines and was immediately offered an appointment. I'm going to ask my GP if the NHS will pay for me to have the treatment abroad if there's no-one in the UK who can help. This procedure is approved by NICE: nice.org.uk/guidance/ipg562...
Hi Marou, rachelvc how did you both get on? I m also looking at alternative treatments and have found somewhere in Austria that does RFA as an outpatient treatment .
Could you let me know if you've found any more info?
Why does he want to remove your whole thyroid? Do you have benign nodules?
I think it may be suggested that you wait. Mine was 5.3cm and I have smaller ones on the other side of the thyroid. Only the large one was deemed suitable for RFA. I had the procedure done in Italy on 18th January - it took a morning - and it has already shrunk quite a lot. Still waiting for the invoice to get some reimbursement from the NHS.
Hi Marou: I'm new to this forum. I have a 4cm thyroid and feel like it's become more obvious in the last month (both in sensation and look). I began to see an Endo. last year on Harley Street who did a biopsy etc. and it is benign, I'm not hyper or hypo., I seem to have a genetic propensity to nodules (my mother has lots). Having seen the Endo. again in March, he had outlined some options, one of them being RFA. We've been monitoring it. I may consider this treatment this year but wanted to know how you feel about the RFA 5 months on? Also, was the treatment painful?
Hi Rachel - I went to Harley Street to get a second opinion on my 3 cm cyst and 2 other nodules, as my local surgeon wanted removal. Had consultation, and ultrasound, reassurance that was not cancerous. They do RFA there, but recommended that there was no need for surgery ( by the surgeon!! ) and to leave it unless it was uncomfortable. Despite the cost I was so relieved to not need surgery, which was all the NHS wanted. if you want more details let me know. Oh and they are doing RFA at Southampton as well,
Hi Rachelvc I hope this went smoothly earlier this week, and that you are recovering well.
Love to hear more about it when you have the time.
Hi Rachel, I am looking for RFA now, as my throat is feeling constricted/ painful. Did you get referred to UCHL directly from your doctor, or from the ENT department at your local hospital? Any advice would be great -
Thanks! Bridget
Hello Bridget....I was getting no where with my Endo so broke off and asked / told my GP to refer me to UCHL. Best thing I ever did. Endo was asked but kept denying any knowledge of RFA. He was trying to scare me with cancer threats etc. He wanted to perform surgery. They obviously get paid a fortune for that. The restrictions to my oesophagus and airways are clear now. So much more energy with this extra oxygen. It was 2 hours door to door and well worth it. Go for it. Rx
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