Large multi modular goiter: I have a large multi... - Thyroid UK

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Large multi modular goiter

Snoopy23 profile image
8 Replies

I have a large multi nodules goitre and need to have my thyroid removed is the recommendation of my surgeon. I'm aware it's a complex operation as vocal chords are close by and my windpipe is being compressed. I did some research on my surgeon to see how many thyroid operations he had performed but he is not listed in the British Association of Endocrine & Thyroid Surgeons. This gives data of names of surgeons in the UK and the number of thyroid operations they perform each year. Has anyone come across this or why a surgeon may not appera on the list? Thanks. I'm keen to have someone who has performed a lot of operations.

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Nanaedake profile image
Nanaedake

You are right to choose a surgeon who has done a lot of thyroid surgery for the best possible outcome. You could contact the surgeon by letter and ask if he is registered with them or with another professional body for thyroid operations just to clarify. Or you could contact the hospital Director of Operations to check. I understand that quite a lot who do thyroid surgery are general surgeons, especially in regional, small hospitals.

I presume you're asking about NHS? I don't know whether someone who operates entirely in the private sector has a different registration system?

Snoopy23 profile image
Snoopy23 in reply to Nanaedake

Hi Nanaedake, thanks for your reply. Yes I am talking about NHS, he is an ENT specialist at a large hospital and I thought he'd be on the list. I was a little surprised he wasn't listed for whatever reason. Just wondered if anyone else had come across this before? Ideally I want someone who has performed many of these ops already.

Clutter profile image
Clutter

Snoopy23,

If your surgeon doesn't specialise in thyroid or endocrine surgery he may not be a member of BAETS or it may be that he hasn't performed sufficient number of thyroidectomies to qualify for membership.

Snoopy23 profile image
Snoopy23 in reply to Clutter

Hi Clutter thanks for responding, that's his specialism ENT. I note in the list there were surgeons listed who had only performed a few thyroid ops so I don't think it is based on number of operations performed to become a member.

Clutter profile image
Clutter in reply to Snoopy23

Snoopy23,

ENT isn't an endocrine/thyroid speciality.

Snoopy23 profile image
Snoopy23 in reply to Clutter

I'll need to find out then how many complete thyroid removal operations he has performed to date. As I want some one experienced in that field. Thanks.

If you look up the hospital online there should be a section devoted to all the consultants and surgeons working there. There certainly is for each of the hospitals I have attended over the years.

My aggressive multi nodular goitre which, like yours, was making its very best attempt at trying to kill me, was operated on by a general surgeon. On seeing the problem inside my neck he consulted by telephone to a more experienced surgeon at another hospital who advised him not to proceed. In the EIGHT months it took to have another op at the second hospital my condition deteriorated so much that the surgeon, a thyroid specialist, admitted to me it had been the most difficult thyroid op he had undertaken in 18 years. I had a perfect recovery with no complications whatsoever, except for the inevitable situation of being put onto levothyroxine monotherapy which is totally unsuitable for anybody without a thyroid gland.

You really should have a conversation with your surgeon, whichever one you end up with, as to what medication you should be on following surgery. He is obliged to tell you about all of them, levothyroxine, liothyronine and NDT according to the instructions of the GMC under which he is working. You also need to consider whether you should undertake Radioactive Iodidne treatment for ablation of the residual tissues that the surgeon will be unable to remove for fear of causing damage elsewhere. I had RAI treatment and have since learnt that I may have been able to have enjoyed more years of good health when these remnants had reinvented themselves into a fully operational thyroid gland. At the time I had great fear of them coming back in a reinvigorated form to cause me even more distress than had the simple MND.

According to my experiences, you need not fear if you go NHS, you have more to fear going private. Would a private doctor have abandoned my op in midstream and lost income even though he felt himself insufficiently experienced enough to continue? Even so, you may be better off knowing how many fully SUCCESSFUL operations your proposed surgeon had ever done!

Snoopy23 profile image
Snoopy23

Hi Panda, thanks for your reply, your post is very informative. I am going NHS without a doubt too many risks as you point out by going private. I need to ask the question about the number of successful ops that he has done to give me some idea and hopefully peace of mind. My concern is the wait time my surgeon said it could be a year on NHS but a matter of weeks if I went private (am not going down that route though) I am hoping it will be sooner rather than later as it is affecting my sleep as the goiter presses on my windpipe. Mine is large on both sides and down into the breast bone so the sooner it is out to better. Though my surgeon told me not to worry that I've had this for a very long time. I'm concerned about the medication once I have no thyroid at all as I'm having a total removal. I've heard a lot of scary stories especially about weight gain!! I'm already on HRT and not sure how thyroid meds will work alongside HRT that is a worry for me too. Thanks.

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