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Lois - Interview 52

Age at interview: 14
Age at diagnosis: 13
Brief Outline: Lois was invited to take part in a double-blind randomised controlled trial soon after diagnosis. She is pleased to be taking part to help others and enjoys some of the tests. She says everyone at the hospital have been really friendly and helpful.
Background: Lois is 14 years of age, White British and lives at home with her parents and siblings. She attends at local school and was diagnosed with an overactive thyroid (Grave's disease) one year ago, when she was 13.

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Lois aged 14 was diagnosed with an overactive thyroid known as Grave’s disease one year ago when she was 13. Soon after diagnosis Lois was invited by a research nurse to take part in a double blind randomised clinical trial. The nurse gave Lois information and explained to her about the trial. The nurse also gave Lois’s parents information too. Lois can’t remember exactly what was in the information however she says it was easy to read and understand and explained clearly about the trial and what was involved.

The main reason for agreeing to take part was to help other people and to give the doctors a better understanding of the condition. She understands that the purpose of the trial is to find out which is the best medication to take' thyroxine on its own or thyroxine and carbimazole together. She says that she was randomly allocated to the group that is taking the two tables' thyroxine and carbimazole.

Before going on the trial, Lois had to have some tests to ensure she was eligible and met the criteria to enter the trial that involved blood tests, a bone scan, and an iodine test. Lois was pleased she was eligible to take part.

Lois will be in the trial until she is 18; 252 weeks. She attends the specialist hospital on a monthly basis at the moment, although this may change as the trial progresses. When she attends her monthly appointment she also has blood tests, her height and weight checked, and her blood pressure taken to ensure that everything is okay. The appointments are after school so she doesn’t miss too many lessons.

Lois is enjoying being part of the study and is pleased to be helping medical knowledge and other people that may be diagnosed with her condition in the future.
 

 

Taking part in a trial made no difference to Lois, she was taking medication anyway. She is...

Taking part in a trial made no difference to Lois, she was taking medication anyway. She is...

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So do you want to tell me about what the purpose of the trial is?
 
The purpose of the trial really was like there’s two medications thyroxine and carbimazole and it was like which, because there was like two medications for it but they weren’t sure which one was the better one and they wanted to find out which one would be like the better one really.
 
And if you think back to trying to remember how they might have explained that to you in the information or how it was explained to you?
 
Yes, they said that I, basically it said a lottery draw to decide which one, which medication you’re, you can have and I am like thyroxine and carbimazole.

Do you think it’s important that young people do take part in clinical trials?
 
Yes because you’ve got to understand that one day it could help like your children if they get it or it could help like a member of your family and stuff.
 
So it’s good to take part. And if you, in terms of your experience, I mean how has your experience been?
 
Liked it, it’s been like really good, I’ve never had no problems at all with it.

 

 

Discussing it with family and friends helped Lois make a decision to take part in a trial. She...

Discussing it with family and friends helped Lois make a decision to take part in a trial. She...

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Did you have to make the decision there and then or did you go away?
 
No we had like as long as you like and stuff and like it was my decision it wasn’t like my mum’s or dad’s it was like my own decision.
 
Right, was that, did you like that?
 
I liked that idea.
 
Did you, did that make, did you think that was important that you have a say?
 
Yes you have got to say because it’s you that it’s happening to really.
 
Yes that’s right. And did you discuss it with your mum?
 
Yes we discussed it and she was like are you sure you want to take part and I was like yes.
 
Okay and was that when you came home and looked at all the information yes?
 
Yes we read it through and stuff and everything.
 
Yes, and did you discuss it with any of your friends?
 
Yes and like family members too and stuff and they said yes it sounds good to do.
 
And did that help you make the decision?
 
Yes because it made it like it made me like want to do it like a little bit more really because it would help people as well like I know it would do.

 

 

There can be a lot of tests before you are eligible to start a trial, but knowing you can make a...

There can be a lot of tests before you are eligible to start a trial, but knowing you can make a...

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Mum' Okay yes you had the bone scan and the die in your blood and everything.
 
Oh was that to see if you were eligible and?
 
Mum' For the trial she had to have can you remember all that?
 
Lois' Yes.
 
Mum' And you had to have the die to see how, whether it was definitely that condition and the bone scan.
 
Oh was that eligibility or?
 
Mum' Yes it was just very simply she had the, when, on the Monday we went to see the doctor didn’t we and he did all these tests on her and things like that but just to clarify it definitely was that condition. We went down to, he came in the room didn’t he and she had die put in her blood to see how much iodine I think it was, to see how much it evaporated and they couldn’t believe how quickly her thyroid soaked it up.
 
Oh right you need to tell me about that?
 
Mum' And then you had the, the bone scan didn’t you, to see whether your bones had grown and you’ve got to have that done every twelve months for the trial, do you remember?
 
Lois' Yes.
 
Mum' Is it all coming back now?
 
Lois' Yes, it’s like...
 
Yes the whole process like you know thinking the whole story. So before you went into, when you agreed to take part they had to do some tests to see if you were eligible as well?
 
Lois' I had a bone scan where just they x-rayed my hand to check it was okay and like I was growing properly and stuff. Then I had ink put in my hand and a thing called a gamma scan and like when you have the die in, it like shows up on like the x-ray your thyroid and they couldn’t believe how quickly it came up and he was like quite amazed.
 
Really, so that was after they put the die in your hand?
 
Lois' Yes and you had to wait like half an hour afterwards and then you went into this thing and you had to lie down on a bed and then this like, big like circle thing came with over like your neck.
 
Yes, was that like a big x-ray machine was it? A scanner?
 
Lois' It was just like a little stem it wasn’t like going into the big like ones it was just like.
 
The MRI?
 
Lois' Yes like the MRI, it was just like a little one that just came over.
 
Oh right, what was it like doing that?
 
Lois' It was quite fun actually.
 
Was it?
 
Lois' Yes, it was funny having something like there and stuff. Yes and there was like tiny babies in there having it done. Yes and like one baby got rushed in, it was like we got like put behind a bit in the doctors and the nurse said like, but I didn’t mind because it was like a little tiny baby.
 
Oh so you didn’t mind waiting a bit longer for your turn?
 
Lois' No because it was really tiny.
 
And did you have any other tests done, before you started the trial?
 
Lois' No I don’t think so; I just had the bone and the gamma scan.
 
So that was just an x-ray on your hands?
 
 

The blood tests enabled the doctors to keep a close eye on Lois and make any changes to the dose...

The blood tests enabled the doctors to keep a close eye on Lois and make any changes to the dose...

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Lois' I like the people that did the blood, were dead nice and stuff and you got like a little, like, you got like antiseptic and it wouldn’t hurt at all or anything.
 
Right, so was it like, did you mind, how did they take the blood was it in like a tube or?
 
Lois' Yes.
 
A pin prick?
 
Lois' It was like a pin prick and then they’d take it out my finger and stuff because like they had to stop taking it out my arm because they thought my veins were going to collapse because they were taking that much blood out of me. So they said which one, you can have like your hand like your finger if you want and I said yes and it’s a lot better because it doesn’t hurt at all.
 
Oh right so you had a choice then?
 
Lois' Yes.
 
Oh right so they just took some blood from your finger in the end because you may, because you?
 
Lois' Yes they were getting like worried and stuff and like every time they like tried to get blood out, we’re going to have to be careful because your veins collapsing.
 
Oh right and is that part of the condition or, do you think or?
 
Lois' No I think it like it can happen sometimes if you take like loads and loads of blood out like at one time, you have to be careful of like your veins collapsing.
 
Mum' No what we have to do is every time we go for a specific visit it’s set out in weeks so the trial dictates more or less where we go but if say something, when [Lois] has her bloods done we get a phone call that night from the consultant.
 
Oh right so he tells you straight away?
 
Mum' Yes he phones us personally and discusses it with us which I’m very, you know, I’m very impressed with and things.
 
It’s like he phones at like half past eight at night.
 
Did he?
 
Lois' Yes.
 
Mum' One night he phoned at 10 ‘o’clock wasn’t it on a Friday night.
 
So what do they tell you when you’re being, when you’ve had your blood test?
 
Lois' He tells me like the results of the blood tests and were they okay and stuff like that. And like, like I think one occasion he went, so he got me a hospital appointment and then he changed my medication.
 
Has he changed it has he, did he say why did he changed it?
 
Lois' Well I ‘vet been feeling under the weather and so I think he got, so he said right we’ll go for a blood test and he lowered my medication then.
 
Right, but you’re still on the same on but the just changed the dosage did they?
 
Lois' Yes they just...
 
That’s interesting.
 
Mum' Then they upped it didn’t they?
 
Lois' Yes and then like they upped it again and...
 
Mum' The trial dictates really so, but if something like say when we go on Thursday for, because we’re due on Thursday for [Lois’s] blood that goes down as an extra visit on the trial. And all her results are done because they do your bloods, your weight and your blood pressure and your pulse all the time.
 
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At the beginning of the trial Lois had to miss quite a lot of school because there were lots of...

At the beginning of the trial Lois had to miss quite a lot of school because there were lots of...

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So how many times did you have to go for two weeks is it like over six months or?
 
Lois' Its till, I got diagnosed in November and I think it’s till the February or March like what they said you can come monthly now.
 
Okay so like four or five months you go fortnightly?
 
Lois' Yes.
 
And then it’s monthly and how long have you been doing monthly?
 
Lois' I think about three months.
 
Three months yes. Okay then you’ll, gradually you’ll change and it will be three months?
 
Lois' Yes they said they’re going to like start and like I’ll go like to the specialist then the local specialist and keep flicking, that’s what they’re trying to do now.
 
Okay so because the specialist hospital is that further away than the local?
 
Lois' Like the local one’s like ten minutes away and the specialist one’s like half an hour away.
 
Oh right. So how demanding is that of your time.
 
Lois' They can be sometimes because like I’ll have to miss school quite a bit because like the appointments are like, but now we’re starting to get appointments like 4 ‘o’ clock so going like straight after school.
 
So is that better?
 
Lois' Yes that’s better because that way you don’t get to miss out on like lessons and stuff.
 
Do they give you a choice of appointments where you able to change the time at all?
 
Mum' Yes they, at first they didn’t, but when you go to book your next one there is a choice that they say because the paediatrician or consultant was aware that we did miss quite a bit of time so he makes it for after school now, he said to make sure that, you know.
 
That’s what I was wondering because fortnightly it’s quite demanding isn’t it?
 
Mum' Yes it was from the parent point of view as well it was quite difficult wasn’t it?
 
Lois' Because you have to like go in like twos because the car park quite bad at the specialist hospital. So one of you has to go in with me while my mum parks the car.
 
Yes I mean parking is a bit horrendous isn’t it? Did that make, was all that, did you mind all that toing and throwing at the time?
 
Lois' No not really because I knew they were like helping me, so I wasn’t really bothered.
 
Did you get any travel expenses do you know?
 
Lois' No.

 

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