Transcript of the BTF ‘thyroid disease and wellbeing’ webinar Q&A session

This is a summary transcript of the patient question and answer session from our ‘Meet the Experts’ webinar on thyroid disease and wellbeing held on 24 January 2024.

Our panel were:

Dr Carla Moran, speaker

Dr Moran is a consultant endocrinologist at Beacon Hospital & St Vincent’s University Hospital, Dublin, as well as an Associate Professor at University College, Dublin. She is also a member of the European Thyroid Association’s Executive Committee and has a particular research interest in rare thyroid disorders. Dr Moran is a medical advisor to the BTF.

Dr Sue Jackson, speaker

Dr Jackson is a chartered psychologist with an extensive research portfolio covering a variety of endocrine disorders and health service improvement studies. She is an Associate Lecturer at the University of Plymouth and also works in private practice. Dr Jackson is a regular contributor to BTF events and resources, including our ‘Looking After Your Psychological Wellbeing’ booklet.

Greta Lyons, Chair

Greta Lyons is our BTF Chair of Trustees and a Specialist Thyroid Research Nurse at Addenbrooke’s Hospital, Cambridge

Key: CM – Dr Carla Moran, GL – Greta Lyons, SJ – Dr Sue Jackson

We have received some questions from patients who have had a total thyroidectomy. Some people have commented they feel there is not much support generally around thyroidectomy, especially afterwards. Can you comment on this please?

I think sometimes part of the problem is that the decision to have a total thyroidectomy might be made relatively quickly. For some people who have it for Graves’ disease, they might have done some reading about it and be sick of having multiple episodes of Graves’ disease. So they are very happy to have a thyroidectomy. For them, it may be all very straightforward and life goes on.

I think there are certainly people who may not be aware that this might potentially be a treatment that is going to be offered to them. Maybe they have not had enough time to think about it or to talk to their clinician about it. So I think it is really helpful for someone to have an initial consultation talking about thyroidectomy. I usually give them some written information. There is some very good information available from the BTF but also from the British Association of Endocrine and Thyroid Surgeons (BAETS). You can go on their website and find information. I think people should take a little bit of time to read that and have a think about it.

I often say to people ‘I think this is a good option for you but I am very happy for you to come back and ask all the same questions again. You can bring someone with you and we can talk about it all again.’ It can be a really big decision for somebody and I think they need to be happy that it is right for them. I think this is the case for anything we do in medicine. I do not think it is right to say ‘Well, this is what you need to have; end of story’ because it really should be a decision that you make with the patient.

So, I think having a couple of visits, trying to get a bit of information for yourself from reputable sources, and then having some support from the nurses after you leave the ward about how to manage your wound and having a number to call if you have question often really helps relieve the anxiety. (CM)

Linked to that we have a question about whether people need to supplement with other vitamins, such as selenium. (GL)

I do not tend to tell people with thyroid disease that they need to take vitamins. Many people wish to take multivitamins; however, this is absolutely fine. If people are not feeling quite right, I tend to suggest that people think about taking vitamin D over winter. We are very deficient in vitamin D so I tell people may to take 800 to 1000 International Units daily. And, for us, winter is October to March. So, I do say to take vitamin D but not really anything else. (CM)

Linking in with that, Sue, quite a few people have been talking about how to get themselves heard in consultations. You have given us lots of tips about how to look after ourselves and not trying to overwhelm ourselves by just doing little bits at a time. I just wondered whether you have any advice for people who just do not feel that they are being heard at the moment, apart from things like improved training for clinicians? (GL)

Yes, we do need to have improved training for clinicians. In fact, I have spent the last three days reading a PhD thesis that documents the problems a particular patient population has because they are not listened to. For these patients, the process of diagnosis takes a very, very long time as all of the common things have to be ruled out first because this is how medicine is generally practised.

At one level this makes sense because it is more likely to be a more commonly occurring illness but it means that you end up with people going back and back and starting to feel like a nuisance. They then wonder if they need to talk to someone else. I was reading something by a doctor the other day about why he is glad to be leaving medicine because these days people self-diagnose and then visit their doctor to try and get them to agree with them. And some doctors find that difficult.

I think we have an inherent tension within our health service. On one hand, we are told we have to take responsibility for our health. On the other hand, we have a situation where we have to have multiple consultations and tests. One of the things I have found helpful, and that I do with a lot of my clients who have chronic health conditions, is encouraging them to keep a condition diary and to record symptoms. When you go and see a doctor they can read faster than you can talk and so if you have information that that they can flick through and can ask you questions about, you can cover a lot more in that consultation. You can provide them with information about what is happening to you holistically, they can access it a lot quicker and come to conclusions quicker. It just speeds the whole thing up. So, yes, I advocate for patient diaries. (SJ)

I would also advocate taking someone with you if you can because sometimes two heads are better than one. And sometimes you are so busy zoning out on a particular answer to a question that you forget to concentrate on the rest of the consultation. (GL)

Yes, it does happen. If you are prone to brain fog, it is a really good idea to take someone with you. And if you are very stressed about something, this can affect your short-term memory and someone can tell you something and it will go in one ear and come straight out of the other. (SJ)

Absolutely. Something like trying to find a car parking space for the appointment and running a couple of minutes late can absolutely throw you. (GL)

We have had a question from someone unsure whether they should take their thyroxine before or after a blood test and whether the timing would make any difference? (GL)

Whether you take your thyroxine or not before your blood tests, it will not make any difference, or a marginal difference if anything, to your TSH and T4. So it does not really matter whether you take it before your blood test or not. (CM)

Another of our participants has said she has a child taking thyroxine but she does not feel like she is getting any better. Others have asked if they do not feel quite well, or their TSH is in range but they do not feel quite on the ball how do they communicate that?(GL)

Concerning the child who is struggling on thyroxine, that’s tough to hear. I’m sure it is tough to see as a parent as well. Hopefully, it is early days and maybe the child just is not quite on the right dose yet. The key thing for the moment is to try and take it correctly so it is worth stating because many patients will not have heard this: It is important to take thyroxine early in the morning on an empty stomach just with water. You should not have any tea, coffee or food for at least half an hour. Some studies have shown there can be some interference with absorption for up to an hour but in practical terms, I find that is really difficult to do. So if you cannot leave up to an hour, that is ok. Try to leave at least half an hour though and usually that works absolutely fine. Try to avoid any supplements containing iron, or any iron-only supplements, for at least four hours and also avoid anything with calcium for a similar time. So, if you are taking any multivitamins, try to take them either with your lunch or dinner as they should, ideally, be taken with food.

If someone still feels unwell despite their TSH looking good: This is something that we unfortunately do encounter among a subset of people who are on thyroxine for hypothyroidism. In these cases, I would suggest visiting your GP. As Sue has said, it is a great idea to write down your symptoms and to think about how long they have been going on. And maybe think to yourself what are the worst symptoms because they are the kind of things that we, as clinicians, think about. So, It is really helpful if you have that ready for us.

We are trained to take good history and examination and we would send off some additional blood tests to look for common causes of your additional symptoms. This will vary from person to person. If we do not find an explanation then that is when we are really talking about things that we can do in our lifestyle to try and optimise our wellbeing, such as the things that we have been focussing on in this webinar. (CM)

How can patients, who are not as mobile as they would like to be, support their wellbeing, in respect of trying to look after themselves and keep healthy? (GL)

I think it is particularly challenging if you are young and the biographical disruption happens so early in your life as it can feel like your whole life has been thrown off course. It is good to find someone who you can talk to about that if necessary.

It can also be traumatic for older people and they can also need support and someone to talk to. I think we underestimate sometimes the power and benefits of talking to other people. Now that can be friends and family, although sometimes they do not understand which can increase the sense of isolation. Some GPs can refer you to counselling and some hospitals have good clinical psychology departments and you can also get good counselling and support through them as well.

Don’t forget there are also a lot of charities, like the BTF, that also offer lots of help and support to people. I think one of the things that makes it worse is feeling that you are on your own and that it is only you. Having meaningful connections with other people and having somewhere you can talk about it is really important. So, sharing it, asking for help and getting advice and working on those bits, little by little, are all important. (SJ)

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