Transcript of Q&A session

AW - Alison Waghorn, Consultant Endocrine Surgeon, President of the BAETS and BTF Trustee

PM - Paul Madgwick, Thyroid surgery patient and BTF Trustee

JP - Julia Priestley, BTF CEO

Q. First of all, a question about size of a thyroid. Is surgery the best route for a larger nodule, for example a nodule that is 3.5 x 3.5 cm? Is surgery going to be the best option for that kind of size of nodule? JP

I think what we need to say is that nobody really wants to have their thyroid out even if it’s half a thyroid. Remember really what we want is our own thyroxine, our own thyroid hormones. So, you don’t want to have your thyroid out unless you absolutely need it. The size of a nodule, and size of thyroid isn’t an absolute. So, I wouldn’t say that you definitely have to have this out or definitely have to have that out.  It depends a lot on your neck and also on where it was. Paul was describing how it [his goitre] went down, what we call retrosternally. That’s more likely to put pressure on the gullet, pressure on the windpipe, if it’s going down into the chest itself. So I wouldn’t say there’s a definite thing.

There are some new options that are coming out but they haven’t really hit the UK. Some people are beginning to use what we call radiofrequency ablation. In Italy they have used laser treatment but I don’t think that will come into the UK.  Radiofrequency ablation, or some kind of ultrasonic machine, to try and decrease the nodule may be what’s used in the future. It would have been quite difficult on Paul’s goitre because there were multiple nodules and that’s a bit of a different thing. You have to make sure if you are going to do something like that, that you haven’t got an abnormal thyroid nodule. Also these treatments are not available in the UK right now for benign nodules in most centres but that may come in the next 5-10 years. But you don’t have to have surgery. If it’s not causing you any problems then why interfere, why take away a piece of thyroid that might be working for you. (AW)

We are beginning to hear more and more about alternatives to surgery for treatment of nodules. One report was about Dr Tim Yusuf, a radiologist in London, doing microwave ablation*. (JP)

Yes, you can use microwave, radiofrequency ablation, ultrasonic ablation.  (AW)

It is always worth discussing with your surgeon as to whether there are alternatives for you. It might be because of the nature or size of your nodule that actually you don’t have many choices but it’s always a good to discuss these with your surgeon just to make sure that you know all the facts and what options you have.  (JP)

The NHS doesn’t have an enormous number of people doing this at the moment. It’s not funded, so these treatments would be privately funded. (AW)

And it’s very dependent on where you are in the country isn’t it? (JP)

It is a bit at the moment. (AW)

Q. With Graves’ disease is there a chance that you can only have a partial thyroidectomy or with Graves’ disease is it inevitable that you will have a total thyroidectomy? 

So in the old days we used to do partials but the problem is you get recurrent Graves’ and it’s working out exactly how much to leave and then you’ve been trying to avoid radioiodine**, usually if you’re having a thyroidectomy for Graves’ disease, so it tends to be a near total or total thyroidectomy. Paul was talking about that if they felt there had been a problem on one side, i.e. the nerve wasn’t working very well then sometimes when you’re having an operation that’s meant to be a total thyroidectomy it will go to a hemithyroidectomy and then let the nerve recover and then go back another day to take the other side.

With Graves’ disease that is a systemic disease, that means it happens to whole body and that means it happens to the whole thyroid. I know I showed that picture, the one in middle, the Technetium scan, where the whole of the thyroid is abnormal. There are people who have overactive thyroid who just have one nodule that is overactive and then you can take part but for Graves’ disease if you are trying to avoid radioiodine, and also help your eyesight, then a near total or total, as much as we can do, is the best way to go. That is what we think at the moment because going back on one side is not an option really. Well, it is but it’s very high risk. (AW)

Q. A few questions about size of goitres. Is the size of the goitre linked to how complex the surgery is? And how often do you end up having to open up someone’s chest when there’s a retrosternal goitre? How rare is that? There’s a lady who said she had a very large one (the biggest her surgeon had seen). Is that a very unusual case? (JP)

No, I specialise in these really big ones. It depends a bit. Sometimes they are really big and they come out the neck even though there is a little bit down and then sometimes they will go down. It depends, it’s very difficult sometimes to absolutely judge. I will take one that I think might need a sternotomy1 or a mini sternotomy (that’s half). You just go halfway down the chest rather than the full one you see for some of the heart operations. I’ll take that to our Liverpool Heart and Chest Hospital but often even those that I take, where I think there is a high risk of a sternotomy, probably 50% of them I can still get up through the neck. It depends on the shape. If it goes down (hand gesture V) it’s easier to get out through the neck. If it goes down like (hand gesture ⌂), where you have a big bit underneath like an iceberg, then they are more difficult and you might need a sternotomy.

It will also depend on the nerve, if the nerve is being pushed and pulled we might do a sternotomy to try and prevent it from getting really pushed and pulled so there’s multiple things that might need a sternotomy. But it is actually quite rare in the UK to have a sternotomy for thyroid. Occasionally thyroids are right down in the chest, that’s a bit unusual. It’s not common. (AW)

Q. There’s a question here about mast2 cells which I am not familiar with. Is there a connection between mast cells and thyroid issues or is there any thinking about the sources of goitres and hypothyroidism and why it occurs in the first place? (JP)

I personally don’t know anything about thyroid and mast cells so I don’t think I can answer that specific question. I’m not an endocrinologist.  Autoimmune conditions: there are some theories that they may start off with something like a viral illness that somehow drives the body to make these proteins, these antibodies against the thyroid but we don’t absolutely know what triggers it and often some people are more predisposed to getting an autoimmune condition than others. I can’t answer that question I would have to go away and look that up. (AW)

That’s what the BTF medical query answer service is for. If the person who asked that question would like to get in touch after the event, I’m sure we can find somebody who can help. (JP)

Q. There are people asking about the follow up from surgery. People worried about all the stories they hear about the NHS services being so stretched. Worried about the follow up care they’re going to get after their surgery. Should they be given a named contact after they have been discharged home in case they have issues in the following days and weeks? Should they be given a contact of who they can get in touch with back in the hospital if they have any worries? (JP)

Ideally yes, it depends on the unit. We have a lovely endocrine surgical nurse who we give contact numbers for. We give ward contact numbers and the surgeons are available through the ward if needed. Ideally yes, but not all units are fortunate enough to have associated nursing staff to support us on that. But some kind of instructions as to what to do if it really did swell up quickly or you think you’ve got an infection. Definitely, either go to your GP or go to the A&E department. That’s what you should do, especially if it suddenly blows up on the day of or a day after the operation. I would go to the A&E department because then there’ll be people there to help you.

With regard to follow up, Paul’s follow up was six weeks. A lot of people will have their thyroid function tested at six weeks and then we might either put the dose up or down. We calculate it according to your weight but it isn’t always quite how it’s all metabolised. So then we look at the thyroid function test and we can increase the levothyroxine or decrease it and try and help you get the best dose for you as an individual. Most people follow up at six weeks. Personally, because I have a suture to remove, I see people at two weeks because I remove the suture myself and look at the scar to make sure it’s OK but we’ll always do the six weeks follow up. If you have a suture that dissolves it will probably be six weeks and then it depends on where your follow up is. Some people will have endocrinology follow up and others will have surgical follow up. It depends a little bit on what happens in your local area. I think Paul, you said, it’s once a year you have thyroid function tests. Is that correct? (AW)

That’s what the surgeon has asked for. He asked for four months after I was fully discharged and then annually after that. That’s what he’s asked the GP to do. (PM)

So we’re just trying to make sure that you’re on the right dose and that it’s all relatively stable and that you feel OK with it. Not everybody feels absolutely fantastic on levothyroxine. It’s not a perfect solution. Because I’ve got my own thyroid (even though I might need surgery in the future) mine will make my own thyroxine when I need a bit of extra whereas if you’re on levothyroxine you don’t make any extra when you need extra and some days you might have a bit too much and some days you won’t have enough because you get the same dose every day. Some days you might feel tired and some people might feel like they have loads of energy. That’s why I’m saying you don’t want your thyroid out unless it’s needed but if you’re getting breathing or swallowing problems you are going to have to consider having part of it or all of it out. For most people, I would say 85% of people, levothyroxine is a really good way of dealing with it. (AW)

We do hear from people who are have ongoing problems with levothyroxine. I suppose the advice would be go back to your doctor and discuss it because often there are tweaks that can be made to the dose, aren’t there? (JP)

There are. We are not meant to have any kind of dose which suppresses the TSH, which is the  hormone that come from the pituitary that drives the thyroid, but you can tweak it around so that it’s still within the normal range. You don’t just have to go up or down in 25 mcg doses. You can do alternate days, you can do a certain number for 5 days a week and 2 days a week, you can tweak it a bit I agree. (AW)

Q. People asking about waiting times as well . We certainly hear from people who have got very, very long waiting times to get on a pathway for treatment. For goitre perhaps waiting up to a year for surgery. What options have they got? I know that waiting times vary in different parts of the country. If your own wait is going to be 42 weeks can you ask to be referred to another part of the country where there’s a much shorter waiting time? (JP)

You are always allowed a second opinion. The problem is that’s usually done by the GP, it can be done by the surgeon. Usually if someone asks me for a second opinion it’s because I think that they would benefit from hearing something from somebody else because they’re not sure or whatever. So they can look around. The problem is that I didn’t have a long waiting list but suddenly I had a whole load of operations that came my way and then now I’ve got a long waiting list. I do think there is a bit work to be done on waiting lists around the country and that’s a bit of the work I want to do as President of the British Association of Endocrine Surgeons. A lot of it is access to theatres. There aren’t enough theatre operating lists. Most surgeons are happy to clear their waiting lists. They’d be delighted, they like operating. There aren’t the operating theatres and staff available to clear these waiting lists. There is a bit of backlog, still from Covid I would say, in many areas because benign thyroid cases did get put on the backburner. That has been a problem. You can ask to be referred elsewhere but you’ll probably just overload another area. It’s not always quite what it seems in the other hospitals. (AW)

Q. There’s a question here about papillary thyroid cancer. Somebody had their thyroid removed in January 2020 because they had a diagnosis of papillary thyroid cancer and they’re just wondering what follow up they should expect. Presumably they’ve been discharged but what kind of follow up there’s going to be regarding an ultrasound on their thyroid in the future? (JP)

That will be very personalised. We normally stratify people to low risk, medium risk and high risk. It will depend on your operation, the type of cancer and whether you’ve had radioiodine. So you will be stratified and there will be a variation on your follow up. Some people will get discharged. Some people, if they’ve still got some thyroid might have an ultrasound follow up. Some people won’t have anything. It’s very much stratified according to the risk that is initiated.

There is a trial at the moment where we are only taking half the thyroid out for papillary thyroid cancer (the HoT trial ***) to see but you may not get any ultrasound. If the thyroglobulin, which is the blood test that we do, is very low and you’re in a low risk category you might not get any ultrasound follow up at all.  (AW)

It would be a good idea for this person to speak to their own team just to get reassurance about what the care is because it is a personalised thing. (JP)

It’s very difficult to say what anyone would do specifically. (AW) 

Useful links

A guide to commonly used thyroid terms

*Microwave ablation  

**Radioiodine treatment 

***Hemi or total Thyroidectomy (HoT) trial