An Alternative to Thyroidectomy & RAI

[kateeliza]

Hi. For anyone that has been recommended a Partial or Total Thyroidectomy for nodules on their thyroid or RAI PLEASE ask your endocrinologist about Laser Ablation. This is a low cost and minimally invasive procedure carried out in Italy and a couple of places in France. It means you can keep your thyroid! My thyroid is functioning normally but because I have a multi nodular goitre including one 4cm nodule which is causing problems swallowing I was only offered total removal or RAI. Neithers an option especially after reading about lots of peoples harrowing experiences dealing with the aftermath of life without a thyroid.

If your thyroids healthy then please talk to your endo about this and ask them why they don't offer it to us in the UK!

I'm in contact with Daria at Modilite who's putting me in contact with surgeons at a couple of hospitals. I have an appointment with Mr Robert Carpenter at St Barts on the 3rd Dec and will ask home about the Laser Ablation then.

If they can't remove the nodule completely then they'll shrink it. Anythings better than total removal.

After months of research i'm so pleased I found this and I wanted to share it with anyone who's in a similar situation.

Links here

A video: youtube.com/watch?v=09mM7bk...(Not working as expected?)

The company that make the machine: modilite.info/

elesta-echolaser.com/wp-con...

A thorough explanantion of the procedure: inkling.com/read/randolph-s...

[Churchie]

Hi there.

I am due to have a hemilobectomy tomorrow and very worried about losing half my thyroid. However I did look into other procedures and as I understand it ablation is only suitable if they know it isn't cancer and they only way they know if it isn't cancerous is once it is removed. Is that your understanding other.

I found out there was a gene test you could have done if America that could give you better odds but in the end trying to get that and then going abroad to have the ablation defeated me.

However I am in quite considerable pain in the back of my neck and between my shoulder blades, that has got considerable worse in the last month although the most worrying aspect is that the surgeon said this is not connected.

I don't feel confident enough to go abroad for treatment so I was interested in you saying you were seeing a doctor in barts. Is that private?

[Fruitandnutcase in reply to Churchie]

Good luck with the op. If it's any consolation I had a friend who had the same thing a couple of years ago (little lump on his thyroid- turned out to be non malignant) and he is fine. He lost his voice for a while but saw a speech therapist and was given exercises which he did and now his voice is back to normal and to my constant amazement he is not needing thyroxine. My sister in law had a total thyroidectomy because her 'cyst' was malignant, that was about 40 years ago. She takes thyroxine now but has led a really active life ever since.

So, although it's a horrible thought try not to worry too much

[milupa in reply to Churchie]

Churchie - apologies for butting in here but something you wrote really caught my attention. I have a 'shrunken' thyroid with nodules, as discovered during an ultrasound check. The doc said that because of the small size this could not cause the choking feeling (and sometimes being unable to swollow, so embarrassing). Over the last months the pains in the neck and between the shoulder blades have become so much worse, no amount of stretching, heat, massage, osteopathy manipulation make a difference. Have you come across any information that would confirm a thyroid connection to this pain? I would appreciate if you shared anything you know/suspect.

If your pains lessen after the procedure -- that would be a kind of confirmation?

Good luck for tomorrow!

[Churchie in reply to milupa]

Hi milupa.

I'm at a bit of a loss too as both the endo and surgeon said there would be no connection between large thyroid nodule and pain at base of neck/top of spine & shoulder blades. It's just I find it hard to accept the coincidence of this. As I need the op I going forward on this and hoping this helps some of the pain and then have to deal with it if if doesn't help. Will let you know (or nudge me) if it helps thought will probably be some time before all is healed to know.

[milupa in reply to Churchie]

Thank you, Churchie, for taking the time to reply a day before your op! I do hope that the pains will disappear after surgery! Keep us updated on everything.

Again, good luck for tomorrow!

[Spareribs in reply to Churchie]

All the best for tomorrow Churchie ... J x

(take food, water, painkillers & humour with you!)

It's probably a "co-incidence" but when I had my (dodgy) nodule removed..

doc said everyone's walking around with a nodule, including his mum - no biggy..

ultrasound - plum sized, lots - scan lost...

'better out than in' - GP said 'a bit of a timebomb' - that got me worried...

FNA - cancer risk - whip it out.... surgeons do tend to have Thyroid ops under belts...

(no alternative offered)

Result (after 8 LONG weeks) it was a benign follicular adenoma - phew! the usual...

AND (relevant) frozen shoulder went - immediately, as did swallowing problem I didn't realise I had...

paid between shoulder blades (attributed to TOS nerve problems) later went with Vit D supplementation... permanent knife in back feeling....

However 2 stone weight gain in 2 months - then diagnosed CFS - yet 'still better out than in'.. one less worry to think about... and the cause of being 'tired & wired'... now just tired! J

[Spareribs in reply to Spareribs]

N.B. I'd do it again for peace of mind, despite going hypo

[Churchie in reply to Spareribs]

Thanks spare rib. That's cheered me up to think shoulder pain might go. That and the neck pain is worse than sore throat and ear ache that they said probably was connected.

[Spareribs in reply to Churchie]

you mentioned Osteopath - the only one who understood my stuff.. a lovely,lovely person... wish I'd found her before the major crap set in...

too complicated for Osteo surgeon - "let's start with your wrists and work up" - shudder!.... I had 2 sets of neuro tests & 2 sets of physio instead- I did ask for one as vascular surgeon was, well more than scarey... come to think of it, its been a long road, I do tend t forget.. maybe for my own good! I'm harping on now.. apologies...

don't forget to take food - like soup - I was offered toast at 3am - TOAST! too hard for a poorly throat! besides I hate toast - not being ungrateful but gawd after a throat op? C'mon....

[milupa in reply to Churchie]

Hi Churchie - just wondering how your procedure went!

I hope you are recovering well, with lots of me-time and caring people looking after you!

[Churchie in reply to milupa]

Thank you for asking. Feel better than I expected but extremely tired. Nhs in very good shape if my experience is typical. Princess Alexandra hosp excellent and have to say surprised me.

My 17 year old son is acting as chief nurse and not doing too bad a job in fact I think he is enjoying the tables being turned and telling me what to do.

Neck still swollen so too early to say whether pains have eased off. Just worried at the mo whether the hypo will get worse as up to now been relatively symptom free. Will up date you on neck and shoulder pain when can assess. X

[kateeliza in reply to Churchie]

The doctor who carried out the ultrasound was adamant that it wasn't cancer even though she didn't carry out an FNA (Fine Needle Aspiration). According to the endo I saw she's one of the best and specialises in neck scans. From what I know a scan, FNA and a biopsy can be used to disgnose cancer. Have you had these done?

A doctor in Sete, France got back to me about the ablation treatment and says I'm a suitable candidate but I will need an FNA to confirm that my nodule is benign.

I'm not in any pain. I just have choking and breathing problems as the nodule is 4cm and compresses my trachea. They offered Total Thyroidectomy as i have smaller nodules on the other side.

The doctors I'm seeing are at St Bartholomews Hospital and I'm being treated there via the NHS. I would never go private unless it was the only way I could keep my thyroid.

The doctor who carried out the inital scan told me to do all I can to keep my thyroid. I'm really sorry you're not in a position to do that.

Why aren't they investigating the cause of pain first? If the thyroids not causing choking problems why are they removing it? Is it cancer?

[Churchie in reply to kateeliza]

I agree that you and everyone should do everything they can do to keep their thyroid. It is simply not a case that you can have it out trouble free and the just easily take medication forever.

I didn't think that an ultra sound scan was sufficient though and if a scan identifies a funny looking nodule you then need an FNA or core biopsy to get a clearer picture of the cytology. These biopsies are then given a grade between 1 and 5 for the chances of cancer. Only THY2 is suitable for ablation

In my case the FNA was THY3a and then the core biopsy was THY3f, which means that I have a 30% of it being a carcinoma. In the end I was persuaded that 30% was quite a high risk to run when even if it was benign it was starting to cause me problems.

Hoping that your FNA gets graded ok. If you do go for the ablation please keep everyone posted as I think it will interest a lot of people here.

[kateeliza in reply to Churchie]

None of the NHS doctors mentioned an FNA. The doctor in France offering the ablation procedure mentioned an FNA but didn't say anything about it needing to be a certain type of nodule. This is the first I've heard of it. You've brought the rain to my parade! Ha ha! I will of course let the forum know if things move ahead. I'm trying to shrink the nodule as well with dietary changes and exercise plus supplements.

[Marou in reply to kateeliza]

Could you please give me the name of the doctor you saw at St Barts? I've been trying to find a surgeon who performs laser ablation (RFA) in the UK but with no luck. Thanks.

[kateeliza in reply to Marou]

They wouldn't perform it at St Barts. They wouldn't even consider it as a treatment. They weren't very supporting or willing to listen. All they could offer me was partial removal and then they said theres always a risk that they'll just take it all out. My mum had hers taken out 40 years ago and has been miserable ever since. I wouldn't go through what she went through but thats just my experience. I was in talks with a surgeon in France and Italy. I can forward you the emails if you DM me your email address.

[shaws]

I think it is very wise to try to have the above procedure if you have no option but RAI etc. It is a good link and information as the consequences of RAI or thyroidectomy (except where cancerous) can be a huge struggle.

[Churchie in reply to shaws]

I have emailed them and it is only suitable if you have had 2 THY2 cytologies within the last 6 months

[kateeliza in reply to Churchie]

I don't know what 2 THY2 cytologies is? Can you elaborate?

[Spareribs in reply to kateeliza]

ganfyd.org/index.php?title=...

from benign to cancerous

[kateeliza in reply to Spareribs]

Thanks for the info. I emailed them my ultrasound results and they didn't mention anything about requiring 2 THY2 cytologies within the last six months.

[kateeliza in reply to shaws]

Thanks Shaws. This is why I posted it as there may be other people like me with healthy thyroids who are only offered aggressive treatments in the UK.

[Marou]

I have just been recommended by thyroid surgeon at the RFH to have half my thyroid removed due to an unmalignant nodule (Thy2). I'd be most interested to hear how you got on with laser ablation and if you'd suggest going to consult Mr Carpenter at Barts. Thanks.

[kateeliza in reply to Marou]

Hi I didn't have the laser ablation as the nodule needs to be a specific type, Class THY 2, SIAPEC classification. If yours is the right kind then you should see if its a possibility. The NHS can fund the treatment abroad. From what I've researched I'd avoid having any of your thyroid removed unless it's completely necessary. But thats my opinion. I still have my nodule and its being monitored via scans once a year. If it was the right type I'd have ablation.

[Marou in reply to kateeliza]

Thanks. Have you any idea who abroad does this? I've been in contact with the makers of the machine in Italy, and various doctors are going to go there to be trained. But I don't really want to be a guinea pig! You mentioned a doctor in Sete, France. Who was that, please?

[kateeliza in reply to Marou]

DM me your email and i'll send my correspondence.

[Marou]

I've had RFA (Radio Frequency Ablation) on a large benign thyroid nodule - 5.6cm - in Trieste, Italy. The NHS are paying for the procedure up to £2400. I had it done at a state run hospital as private would have been more complicated for reimbursement. I was in and out in a few hours, having completed more hours bureaucracy the previous day. Back home and feeling absolutely fine. An ultrasound in a month, plus blood tests, then a check-up in Trieste in 6 months for another US and maybe blood tests. Really pleased.

[Clutter in reply to Marou]

Marou,

Well done, the red tape in getting NHS to fund it must have been immense.

Is the intention that the RFA ablates just the nodule or the entire thyroid gland?

[Leener71 in reply to Marou]

I would be very very intereted to know where you had the treatment in triest and who to get in touch with.

Eileen

[Marou]

Just the nodule. The doctor said that I should notice results in a few weeks.

[kateeliza]

That's amazing news! Congratulations and you got it sorted so quickly. I heard too many no's so gave up. This has inspired me to pursue this course of treatment again with the NHS. Did they cover your travel and accommodation?