Dr Catherine Peters (CP), Dr Nadia Schoenmakers (NS), Joe Straw (JS), Julia Priestley - BTF (JP)At our February ‘Meet the Thyroid Experts’ webinar, we heard from both thyroid specialists and a patient. Paediatric endocrinologist Dr Catherine Peters from London’s Great Ormond Street Hospital explained to the children and parents in the audience about the different thyroid conditions that occur in children. She was joined by BTF trustee, Joe Straw, who talked about growing up with congenital hypothyroidism. The highly informative session was expertly chaired by Dr Nadia Schoenmakers.

These are some of our attendees’ questions answered by our experts.

Key: Dr Catherine Peters (CP), Dr Nadia Schoenmakers (NS), Joe Straw (JS), Julia Priestley - BTF (JP)

What causes an autoimmune disorder in children especially Hashimoto’s?

We do not know the answer to this question. The antibodies are part of the body’s normal process to fight infections, viruses and bacteria. They recognise and have a memory of viruses and bacteria they have seen before. That helps them to multiply really quickly if they come along again. Sometimes they can mistake a little bit of the thyroid as being foreign. It’s basically a case of mistaken identity and the body develops antibodies to the thyroid. This can also happen with different bits of the body with other autoimmune conditions. There are probably certain triggers that might be viruses or infections that cause the mistaken identity. These might come on top of a genetic predisposition. That is something we know very little about and there is an awful lot of research going on in that area. One of the other typical autoimmune diseases where there is an inordinate amount of research going on is type 1 diabetes. I would say ‘watch this space’ as we are learning more all the time. (CP)

What’s making my thyroid fight itself and are there any specific treatments for the autoimmune part of Hashimoto’s?

There are drugs and medicines you could give to dampen down the immune response but that would be really very drastic, and they all have very nasty side effects. So generally, for autoimmune conditions, you’re better off treating the actual condition than trying to fight the immune response. In some immune problems you cannot really get rid of antibodies themselves. Other ones, like Graves’ disease, may just burn out by themselves in a lot of people. Some forms of Hashimoto’s and autoimmune hypothyroidism also burn themselves out. So, there is not much point in treating the actual immune response itself. (CP)

Can you talk about the likely outcomes in children with congenital hypothyroidism and whether they can be prevented with treatment, please? For example, is there any link between congenital hypothyroidism and ADHD? Also is a delay in speech due to congenital hypothyroidism?

The good news is that most children don’t have any of these negative outcomes and the outcomes to all of these conditions are good. Joe is a brilliant example of what you can expect. However, there are some children who do have symptoms outside what would normally be expected. I do see speech and language delay in children with congenital hypothyroidism; particularly those with a lower T4 when diagnosed. However, this resolves itself in the majority of children and no longer causes any difficulties. I don’t see that in acquired hypothyroidism. What we think happens is that there is a little bit of a delay in the development of the pathways in the part of the brain that’s dependent on the thyroxine of the baby. The other thing that happens in some children with more severe forms of congenital hypothyroidism is a form of processing difficulty in terms of being able to process instructions. Sometimes that, in conjunction with speech and language difficulties, does get labelled as autism and then it all resolves itself. So there is definitely a group of children with congenital hypothyroidism who are suspected of having autism for a certain period but then it goes away. Then there are a few children that do have autism-like features associated with congenital hypothyroidism, but it is very uncommon. In these cases, I would use the diagnosis of congenital hypothyroidism to get the resources to support your children’s needs. (CP)

A question for Joe: Is there a part of you that thinks if you did not have a thyroid condition you would have been a premier league footballer or world champion boxer, or did it make no difference?

It made no difference. There are a lot more factors involved when it comes to being a professional sportsperson. I chose to stop boxing at the time I was in the Yorkshire squad. I used to enjoy it and I never expected to put on a pair of gloves. I just started to do it for fitness and exercise. It was the same with football. I have always done sports for the enjoyment of it. Having a thyroid condition, when it was under control, never stopped me from performing to my absolute best, whether that was on a football pitch or in a boxing ring.

My child still has symptoms even though their TSH level is within the normal range. Should that be expected? Will the symptoms such as fatigue, and headaches and memory problems get better?

The TSH tends to take a longer time to change. It is more of a constant hormone and the free T4 can be more variable. The best thing is to remember to take it at the same time every day and try not to miss any doses. However, if you do have a few days where you miss a dose, people can be quite sensitive to that. So when they start taking it again after a couple of days they can feel quite agitated from taking it. (CP)

Yes, there have been times I’ve been away for the weekend and forgotten to take it. When this happens, I will feel a little bit sluggish maybe three days afterwards. I do notice the symptoms, though they’re not serious. I certainly slow down a bit and might struggle to concentrate or have a headache and maybe even a bit of constipation here and there. (JS)

Another thing I was going to say was: it’s not always necessarily due to people not taking their thyroxine. People have different points where they need their thyroxine concentrations and their TSH concentrations to be. So, a normal TSH level for a child might be less than 6, but somebody might feel better when their TSH sits at 2.0. Somebody else might feel a bit better if it sits at 3.0. Particularly in congenital hypothyroidism patients, children might find their free T4 need to be a little above the normal range in order to get the TSH into range. For people with congenital hypothyroidism, I would suggest that you’re working to get the TSH consistently into the normal range. For the young person who has hypothyroidism, it might mean that the free T4 needs to be very slightly above the normal range. This is because there is just a slightly different set point and you may feel better that way. So it’s better to have the TSH in range and free T4 a little bit high than having the free T4 in range and the TSH a little bit high. (CP)

Joe, do you have any tips to persuade teenagers to take their medication regularly?

For me, it was always important to take it. I would maybe just emphasise that to a certain extent you’re putting your enjoyment of life at risk. For example, you might not be able to do the things your friends are doing as you won’t have as much energy. Or you may be feeling unwell as your thyroid level is not quite as it should be. But if you do take it you will be fine. So, if you want to be like your friends, then take it! (JS)

My son was diagnosed with central hypothyroidism at 15, I am concerned whether there could be long lasting effects. Is there anything I can do to help him with his fatigue and brain fog?

Central hypothyroidism doesn’t get picked up by the blood spot screening programme. It is much less common than primary hypothyroidism. People with central hypothyroidism have an intact thyroid factory but their pituitary control centre might not be working as optimally as it is could. The thing about pituitary problems is they can evolve over time, so you can develop pituitary hormone deficiencies in succession over time. So, it may be that your son has not had severe hypothyroidism all his life. I don’t know his story. If he is feeling unwell he needs to get the other pituitary hormones checked too. So you need to speak to his specialist to find out whether the other pituitary hormones might be impacting upon why he’s not feeling quite as good as he should be. (CP)

Joe, is there any specific guidance that can be given to teachers about children in their class with a diagnosis?

I do not think there is any specific guidance, but I am sure a specialist would be happy to write a letter about what it could mean for a child with a thyroid disorder at school. The BTF might also have resources to help explain it to your child’s school. (JS)

We have lots of resources that we often give out to families to take into school or share with schools. So, if you would like to get in touch or have a good look at our website, we can send you something. We have lots of information for teenagers as well which can be useful. (JP)

Do you have any tips for getting babies to take thyroxine?

Some babies just don’t like the medicine so I guess it depends on whether you’re using crushed tablets or whether you’re using a solution. For the crushed tablets, usually mix with a little bit of water and give it that way. The solution is very thick and gloopy so some children find it quite difficult to swallow. We tend to say don’t give it with meals. Make it up in an ounce or 30ml of milk, not the whole bottle. Let your baby take the 30ml first. Settle your baby, wait 20 minutes and then give the rest of the feed because often babies take it if there’s a little bit of milk mixed in with it. If you do the same thing every day it doesn’t matter because the thyroid function tests are going to get adjusted on the same practice. So, as long as you’re doing the same thing and you’re always mixing it with a little bit of milk it won’t matter. (CP)

My child is in their early teens and has been diagnosed with hypothyroidism. Do they need to be under an endocrinologist or can their condition be managed by their GP?

I think if a young person is essentially an adult i.e. has gone through puberty and has finished growing and is generally otherwise well, then the GPs can manage that very well. This is because the thyroid function tests (TFTs) don’t usually need a great deal of change and generally can be measured once a year. If the child is still growing or there are any other issues and the TFTs are unstable then I think a referral is appropriate. You don’t necessarily need to go to an endocrinologist. You can be referred to your local hospital paediatrician. They are good at managing growth, understanding if there are other complications and how they might relate to one another. So, I think most children should see a paediatrician if they’re growing and need regular thyroxine. Once they are past that stage, GPs are really good at managing adult hypothyroidism.

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