Thyroid Goitre treatment: Hi Today the Endo I saw... - Thyroid UK

Thyroid UK

141,188 members166,427 posts

Thyroid Goitre treatment

Rachelvc profile image
31 Replies

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

Written by
Rachelvc profile image
Rachelvc
To view profiles and participate in discussions please or .
Read more about...
31 Replies
Heloise profile image
Heloise

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.

stopthethyroidmadness.com/t...

Rachelvc profile image
Rachelvc in reply toHeloise

Thank you I will read through.

Clutter profile image
Clutter

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.

_______________________________________________________________________________

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.

Rachelvc profile image
Rachelvc in reply toClutter

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.

Clutter profile image
Clutter in reply toRachelvc

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.

Rachelvc profile image
Rachelvc in reply toClutter

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

Rachelvc profile image
Rachelvc in reply toClutter

Thank you. Reduction of this goitre would be fine for me as no sign of anything nastier at this stage.

Heloise profile image
Heloise

Rachel, surgeons are ALWAYS set on surgery.

Rachelvc profile image
Rachelvc in reply toHeloise

I understand they are paid so much more so it is not surprising.

2ndtimeround profile image
2ndtimeround

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.

Rebec profile image
Rebec

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 profile image
Rachelvc in reply toRebec

Thank you the warning. I had that happen with one of my ovaries!

helvella profile image
helvellaAdministrator

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.

Rachelvc profile image
Rachelvc in reply tohelvella

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.

helvella profile image
helvellaAdministrator in reply toRachelvc

Best of luck finding one. And, please, do post back with the story of your search and, I hope, successful treatment.

in reply toRachelvc

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?

Rachelvc profile image
Rachelvc

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 ?

Rachelvc profile image
Rachelvc

Yes very worrying

Marou profile image
Marou

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...

bridge1 profile image
bridge1 in reply toMarou

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?

Rachelvc profile image
Rachelvc in reply toMarou

I have found they are now doing it in Southampton but it is prohibitively priced. I was quoted £8000.

Marou profile image
Marou

Why does he want to remove your whole thyroid? Do you have benign nodules?

Rachelvc profile image
Rachelvc in reply toMarou

Yes I have 2 that are 3 cm in size. Do you think I would be able to have ablation?

Marou profile image
Marou

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.

Laurel2017 profile image
Laurel2017 in reply toMarou

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?

bridge1 profile image
bridge1

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,

Rachelvc profile image
Rachelvc in reply tobridge1

Dear Bridge1 Today I am off to UCHL for RFA. As you can see I have been waiting for a longtime to find this treatment on NHS. This saves the NHS 5 days of a hospital bed as well as loadsa money. I will let you know how it goes.

bridge1 profile image
bridge1

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.

Rachelvc profile image
Rachelvc in reply tobridge1

All went very well. Third day after treatment and initial swelling from treatment I now have a slim neck! Delighted to recommend the UCHL.

bridge1 profile image
bridge1

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

Rachelvc profile image
Rachelvc in reply tobridge1

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

Not what you're looking for?

You may also like...

T3 - Heart - adrenals / thyroid goitre

I was diagnosed about 10 years ago with underactive thyroid. Went on T4 and felt ill. Had really...
Numberone1 profile image

RFA treatment for toxic multinodular goitre

I am starting this post afresh as advised by @[1040457] the dialogue regarding RFA...
Celticfiddler profile image

Updates on Goitre Surgery…

Just to provide further update on my Thyroid Surgery, I am currently waiting on a date for surgery...
Void1234 profile image

Multinodular goitre/thyroid antibodies

Hi, this is my first post and I'm in need of help/advice. Judging by what I have read, I believe...
Surejosie profile image

Goitre getting bigger

around 2 weeks ago I noticed a lump in my neck, I'v been feeling some pressure on my windpipe for a...
caz85 profile image

Moderation team

See all
helvella profile image
helvellaAdministrator
Buddy195 profile image
Buddy195Administrator
RedApple profile image
RedAppleAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.