One in Six Billion

Series 2 episode 8. Simon Goode and Angus Jones. Diagnosing Type 1 diabetes is difficult in older adults

Andrew Hattersley and Maggie Shepherd Season 2 Episode 8

Simon Goode was diagnosed with Type 2 diabetes aged 28.  He explains how it took 6 months of feeling unwell before it was realised he had Type 1 diabetes instead. Exeter Professor, Angus Jones, has done research showing that mistakes in the diagnosis Type of 1 diabetes are common in the older adult and offers solutions to help doctors get the diagnosis right. 

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This is One in Six Billion, a podcast about diabetes and genes with me, Maggie Shepherd, and me, Andrew Hattesley. For me, it was the fact that actually I'd been misdiagnosed and I'd been treated for a condition that I didn't have.

 

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Welcome back to the One in Six Billion podcast. Today we're carrying on with our series about type 1 diabetes and we're very grateful to Simon for joining us today to talk about the difficulties in making the diagnosis in type 1 diabetes, especially as an adult. We're also welcoming Professor Angus Jones, who is going to talk about his research in trying to improve the diagnosis of type 1 diabetes.

 

in older adults. So welcome both delighted to have you with us today. I wonder if we could start Simon by you introducing yourself to our listeners. Yeah, of course. Hello, my name is Simon Goode. I live in West Somerset with my wife and two young children and I'm a data and reporting manager in the telecoms industry, which is far more exciting than it sounds. Great, welcome Simon. It would be great if you could just start your story of how you

 

got diabetes from the beginning. So in 2021, before halfway through, so you know, the summer, I started to, I started to feel like things weren't right. And it did start with something just as that I couldn't put my finger on what was really feeling wrong, but I just knew I didn't feel right. Not to a point at this point where I needed to go and see a GP or anything. But then fatigue started to kick in.

 

That was the first real sign for me. I was struggling to get up in the morning, particularly with one young child at the time. I was struggling to get up and, you know, do things in the night with him. And that fatigue got to a point where it started to impact, yes, my home life, yes, my role as a father, but also my work. I found that I was less on point. I was less on the ball. Things were slipping and that was not like me at all. So I decided to...

 

to pick up the phone and get a GP appointment. I was able to go and speak to my GP. They also at that point in time couldn't say definitively something was wrong. They ran lots of tests, blood tests, et cetera. And what returned was high blood sugar. I have a younger sister who is fairly significantly younger than me. She's now 16. She was diagnosed at the age of two. So I actually was quite familiar with type one diabetes and what...

 

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type 1 diabetes entailed. So at that point I'd kind of made an assumption. I was like, OK, I must have type 1 diabetes. The genetic side of things has got me and that's it. But actually I was told that I had type 2 diabetes and I was set on a course of medication from there. So can you tell us what age you were at this point, Simon? Absolutely. So I was 28.

 

Right, and so you were being told by your family doctor and the practice that this was type 2 diabetes. So how did they go about thinking you should treat that? So they started me on a course of metformin, which is an oral tablet that I was taking. But alongside taking metformin, there was also a lot of advice and guidance around lifestyle changes. So, you know, how to eat better, how to eat healthier, exercises that could be done.

 

things that I could do personally to try and reduce the blood sugars. So I began to take the metformin and over the course of let's say eight to 12 weeks initially, I wasn't feeling any impact. And if anything actually, I was starting to feel worse. The fatigue was starting to set in. I noticed changes in my eyesight, which wasn't normal for me at that point.

 

What changes did you notice Simon? So driving the car I would potentially struggle to read signs at the side of the road or I would struggle to see a number play in front of me. Did you have other symptoms that were more than just the tiredness at this time? Yes, so nausea was becoming quite common, feeling nauseous, particularly after sort of meal times I'd start to feel quite unwell.

 

I was actually feeling less and less hungry. I just didn't have the same level of appetite that I'd had previously. And I, you know, I was somebody with quite a big appetite at that point in time. Thirst increased. I needed to drink more, but never really felt like I wasn't thirsty, which results in needing to go to the toilet more often. In the night, getting up in the night when you're also feeling fatigued and tired to have to go to the toilet because you've had to increase your fluid intake.

 

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Yeah, those were the key things. So I'm also interested, Simon, how did you react to that diagnosis of diabetes and the diagnosis of type 2 and the fact that you felt you weren't really feeling any better on the metformin medication? I think, if anything, Maggie, it almost enhanced the thoughts in my head that actually maybe this isn't type 2 diabetes and this is type 1.

 

So I did return to the GP after around three months. I explained my concerns. We talked a little bit more about my family ties and type one diabetes, but the result of that second review appointment with them was that we were going to up the metformin. This was, we were approaching Christmas of 2021 at this point and they were going to double the dose of metformin that I was taking in an effort to reduce

 

the blood sugars. And it really did impact that sort of festive period and my ability to partake in it to its fullest. So at this point, it's progressed where the impacts on me personally are getting stronger and stronger. And I'm deciding that I'm really quite unhappy with this and something needs to be done about it. Was it impacting on your work as well?

 

Absolutely. Absolutely. You know, I think I've mentioned previously and my ability to focus, it's quite a detail oriented role that I'm in, but also with quite a bit of management responsibility. So I'm responsible for others and to have lapses in both the detail oriented data side of what I do and the people management side of what I do was quite frustrating.

 

And at this point, had you been asked to blood glucose monitor at all? I wonder how you were finding out how your diabetes was going? Only through blood tests at the GP at this point. I hadn't been provided with a glucose monitor or any other technology to monitor my blood glucose. I was relatively frequently attending the GP practice for blood tests with a nurse. I'm talking to my mother.

 

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quite frequently. She'd been the primary carer for my sister from the age of two. And she was also quite unhappy with the way things were going because things weren't necessarily rapidly getting worse. But over time, you could really feel the difference. And my mother doesn't live locally. So I would see her and then not see her first, say, eight weeks. And then I would see her again and she'd think, wow, you you're looking quite poorly. You're looking quite gaunt, pale. You're losing weight.

 

And she decided to do a little bit of research into things that were happening locally and found that Angus, who is on the podcast with us today, was running a study in conjunction with Exeter University around the misdiagnosis of adults. So I sent Angus an email, a very long email, multiple paragraphs talking about my symptoms, my experience so far in terms of type two diagnosis and the fact that I had a

 

close family history of type 1 diabetes. Angus responded to me by lunchtime to say, yes, I am in, I'm running a clinic in Exeter tomorrow afternoon. Come and see me. Fantastic. So can you tell us what happened when you came to see Angus? I was full of trepidation. I was quite nervous in a sense because I think in the back of my mind, I knew what the result was going to be. I think the fact that

 

I had been through the type two diagnosis and taking the medication to no avail. I think I kind of knew what was coming. So first things first, I saw the wonderful nursing team. They took all my height, my weight, asked me numerous questions. And then I went in to see Angus and again, took Angus through.

 

what had happened, what my symptoms had been, what my symptoms still were, the general impact it was having on me and my role as a father and my career. And it was probably 20 to 30 minutes of discussion before they confirmed to me that they did believe I had type 1 diabetes. And although I knew it,

 

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that I felt that was going to be the outcome. I think somebody saying that to you, for me personally, knowing what that entails and what that shift in lifestyle was going to be for me, it hit me quite hard because I knew at that point in time that actually here comes the blood glucose monitoring, here comes the insulin dependency and the administering of insulin.

 

and all the other stuff that comes alongside with it, you know, the way in which you lead your life, the things you have to be thinking about. It's almost like a chess match at times where you're trying to play the game a couple of steps ahead. And I knew that was coming for me. I knew that was what it was going to be for me now. In a sense felt lucky in hindsight that it was not the culture shock for me, that it probably is for the majority of people that are diagnosed later in life. So there is your silver lining there.

 

in that I knew what to expect and I had people around me also, including my wife, that knew what a life alongside type 1 diabetes would entail. Fast forward about 90 minutes and I'd spoken to a wonderful diabetes nurse. I had a bag full of equipment and I was ready to go home and embark on this new journey. That's my experience of diagnosis, really.

 

And that really meant you'd gone fairly rapidly from being somebody who at least the doctors thought had type 2 diabetes, where the treatment was diet and tablets, to a different doctor who thought that the actualist was type 1 diabetes and therefore the treatment was insulin, replacing the insulin that you weren't making and matching that to your diet, to your exercise. And suddenly a complete

 

shift of emphasis, particularly on the amount that you needed to do in that situation. Correct. I think I woke up that morning as a type 2 diabetic on a regime of oral medication in the form of metformin and diet and exercise. And I went to bed that evening after administering my long acting insulin, because that was the new normal for me.

 

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it was really that rapid. But I felt infinitely more at peace with that as a diagnosis than I did previously. For me, it was the fact that actually I'd been misdiagnosed and I'd been treated for a condition that I didn't have over a period of six months where I'd already had to make some quite significant lifestyle changes in response to a type 2 diabetes diagnosis.

 

I now had to do that again. I had to reset and I had to be prepared to make those changes again. As a family, we're quite active, we're quite outdoorsy, we like to go for long walks. We can't just go for a long walk anymore. know, have we got all of these things that we need? Have I got treatments for low blood sugars? Have I got my insulin? Have I got a quick on take of carbohydrates that I can have if my blood sugar starts to drop?

 

Has my phone got enough battery to be able to continuously monitor my glucose and make sure I'm okay? These are all things that don't just impact me. My wife's been an absolute hero through all of this and she's the one that carries most of it in her handbag. So I'm very, very lucky. But yeah, the impact on those around me was also quite significant. And you mentioned when you got this new correct diagnosis of type 1 diabetes that it hit you quite hard.

 

So I'm interested in hearing a little bit more about that, but also how soon you started to feel different in terms of the symptoms once you started on insulin. In terms of feeling the difference, it was incredibly rapid. was 24 hours, I felt a bit better. 48 hours, I felt a bit better. After a week, physically, I was the person that I used to be that I hadn't been for

 

nine months. I hadn't been that person for such a long time and all of a sudden I was again. My focus had returned, my get up and go, my drive, my motivation, all those things were just back and that felt wonderful. That really did feel wonderful and I think that rapid improvement in my physical

 

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and cognitive strengths and abilities.

 

really helped me with the mental side of being diagnosed with a lifelong condition that requires quite intensive treatment. That's not to say it didn't exist. The mental health impacts did very much exist. And I would say for a couple of months post diagnosis,

 

of type 1 diabetes, I actively avoided alone time. I didn't really want to be on my own with my thoughts to sort of think about it. What I wanted to do was just get on with it. But after that couple of months went past and I did find myself in a quiet room or on a train on my own with my thoughts, I started to realize how much of an impact this was.

 

I've got to inject this incident into my body five times a day. I've got to check my blood glucose. I've got to watch what I eat. I really fancy that chocolate ice cream when I'm strolling along the beach, but I can't just go and pick it up. I've got to go through a process before I can eat that chocolate ice cream on the beach. And as somebody who has suffered with mental health in the past, I would say it was bordering on depression at times.

 

the overwhelming feeling of having to manage this and it not being temporary. Every health problem I've ever had in my life up to this point was temporary. It was fixable. This was not temporary, but it was manageable. And I came from a position whereby I'd watch somebody go through it. I'd watch my baby sister at two years old

 

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and start this regime of treatment and deal with it like an absolute champion. So I had a great role model really close to me that I've always been able to call on for advice. Like I say, she's now 16. I'm in my thirties. So there is an age gap, but we're able to support each other. And that's wonderful. And additionally to that, there are online support groups. There's one on Facebook for

 

men with type 1 diabetes that I've joined and they have lots of fantastic conversations. They talk about resources, they talk about their experiences. There is a lot of support out there and you don't have to look too far to find it. That's brilliant, Simon. Thank you very much for taking us through that journey that you went on with the diagnosis not being made correctly. I think we'll switch over now to Angus and

 

talk to him about why is there a difficulty with diagnosis and what are the issues. So could you introduce yourself to our listeners Angus? Thank you for having me on the podcast. I'm Angus Jones. I'm a diabetes specialist doctor and research working in Exeter. So Angus, this is an area where you've been doing a lot of research. So maybe if we start at the beginning, how common is it that there are problems in either misdiagnosing people who've got type 1 diabetes as type 2 or

 

type 2 as type 1? So what we see is that particularly in adults and particularly once you get to around age 30 or over, obviously some are a little bit younger than that, it can get very difficult to diagnose type 1 diabetes and we see a lot of issues around diagnosis really in both directions. People who have type 1 diabetes and are diagnosed as type 2 and people who have type 2 diabetes and in fact are diagnosed as type 1. So we see several thousand people every year across the UK

 

will be developing type 1 diabetes as an adult and will be diagnosed and treated as type 2. And that's about, after about age 30, that's about 40 % of everyone developing type 1 diabetes. And the other way around, around 30 or 35 ,000 people in the UK are diagnosed and treated as type 1 diabetes, but actually they don't have that condition, have other types of diabetes. And in adults that will mostly be type 2 diabetes. So I think...

 

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Many of our listeners will think, surely type 1 and type 2 diabetes are completely different and need different treatments. And why are doctors and nurses making mistakes when it comes to diagnosis? What's the problem? The very simple answer is it's often very, very difficult. I mean, we often have this idea in our heads that type 1 diabetes occurs in children and doesn't really happen in adults, and that type 2 diabetes occurs in older adults who are usually overweight.

 

But that's not actually true. There's huge overlap. So we know in fact the majority of type 1 diabetes develops in people who are adults. And then type 2 diabetes is increasingly occurring in young people. We're now seeing it in children as we see increases in obesity rates. So there's overlap in the age. And if we look at body weight, well, we know at least a third of people are overweight. So that will be a third of people with type 1 diabetes. So again, it doesn't perfectly differentiate. But plenty of people with type 2 diabetes are thin. About 7 % of people with type 2 diabetes are thin.

 

These characteristics just don't perfectly discriminate at all. It's the same with all the other features. We think of a severe presentation or a condition called ketoacidosis being really suggestive of type 1, but actually a lot of people with those symptoms will have type 2 diabetes, particularly in adults. So for doctors, it's really, difficult. There isn't a single feature you can just go, yes, that's type 1 diabetes, and yes, that's type 2. And many people have this mix of features that can point in different directions, and that makes it really, difficult. And often, on the features alone, even the most expert.

 

person who's read all the papers and knows all the data just won't know. Why are the problems particularly in adults of making a diagnosis, whilst in children there seems to be far less problems with misdiagnosis? The basic issue is how common the different types of diabetes are. So the vast majority, at least 95 % of children developing diabetes have type 1 diabetes. So if you've got any features of type 1 diabetes you're likely to have that condition. In adults it's a completely different situation.

 

the vast majority of people developing diabetes have type 2 diabetes. Ultimately, if you're working as a GP and if you diagnosed everyone presenting over 30 as type 2 diabetes, you would be right, the vast majority of the time, not because type 1 is any less common in that age group, it's because type 2 is incredibly common. So for people like Simon, how can we help clinicians make sure they've got the right diagnosis from the start? So there's a few different

 

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parts to this. One is just an awareness that type 1 diabetes and classical severe type 1 diabetes where you stop making insulin and need insulin to survive really does occur right throughout life. And the other issue also with type 1 diabetes in older adults is that there's this common understanding with doctors which isn't right that if you have type 1 diabetes you would need insulin absolutely immediately. And we know that isn't true because before insulin was invented people would often live for some years.

 

The very simple message is, and we did a lot of research relating to this, is people that are diagnosed as type 2 diabetes, but if they progress rapidly in a way we don't expect, that is actually the strongest marker of type 1 diabetes in older adults. And the very simplest message for doctors, I try to get out when I'm talking about this and teaching and writing articles, is actually two parts to it. One, if you're not sure, or people have symptoms or features that might suggest type 1 diabetes,

 

we need to carefully monitor for rapid progression. Because also if someone's well and the glucose levels are okay and responding, that's okay, we can watch them. But as long as we don't send them off to come back in a year when they might get very sick if they do have type 1 diabetes. And if people do progress very quickly, that is an incredibly powerful predictor that they've actually got type 1 diabetes. We see even across everyone in that situation, it goes to interesting within three years, we've shown that really 40 % of them appear to have type 1 diabetes. So even if it...

 

Simon's case, had lots of other features, but even without those other features, that rapid progression should really trigger a question, is this type 1 diabetes? And the next step in that situation where there's features of type 1 diabetes or rapid progression, regardless of whether we suspect it or not, is to get a test because we shouldn't be diagnosing type 1 diabetes nowadays purely on features alone, really in adults. It's too difficult and there's too many...

 

errors, so we need tests and the tests we do in that situation of diagnosis is a test called ILOT antibodies and these are antibodies against the cells that make insulin that are seen in type 1 diabetes. So there's certainly been a move recently with recent guidelines to really where type 1 diabetes is suspected to measure these tests to confirm the condition. So you're trying to find an autoimmune disease which is the main difference, the main difference is that in

 

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Type 1 diabetes, the autoimmune system is destroying the beta cells, as you say, over a period of time, so it may not be immediate. therefore, what you're looking for is the particular marker that's found in the blood, the autoantibodies, that goes with the autoimmune process and indicates type 1 diabetes at a time, presumably, when the body is still making some insulin. So the antibodies allow you to pick it up before all the beta cells.

 

destroyed, so if we had Simon at diagnosis, if that blood test had been done, it would have suggested by being positive that there was an autoimmune process and therefore what happened, which was that his body produces less and less insulin, was going to going to happen and he was going to need insulin from the beginning. That's absolutely right. So the reason the treatment is very different of type 1 and type 2 diabetes is

 

primarily because people with type 1 diabetes stop making their own insulin or at go down to very, very low levels. And that's why they need insulin treatment to survive and become very sick and unwell without insulin treatment, but it also affects a lot of other parts of the management. So if you stop making insulin, you have very, high variability in blood glucose. And that's why people need very complicated insulin regimes with lots of injections or pumps, why low blood glucose is very common and why in fact other treatments don't seem to work in.

 

outside insulin in type 1 diabetes. when we're making a diagnosis of type 1, we're essentially saying, is this person who's going to rapidly lose their insulin secretion? But the problem is that diagnosis, we can't just measure insulin secretion because actually people with type 1 diabetes often make a lot of insulin right at the beginning and it's no overlaps with type 2. So right at diagnosis, the most useful tests are these antibodies to look for evidence of an autoimmune process. But if you go down the line,

 

actually whether or not there's an autoimmune process is less important because what matters to treatment is that has someone lost their insulin and that's a different test that we use called C -Peptide in that situation. So do you want to explain to us about what C -Peptide is and why that's a good test for whether people on insulin are making their own insulin? We do have tests that can measure insulin directly but the problem with measuring insulin

 

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in someone who's having insulin injections is our tests can't tell the difference between insulin we've made in our own bodies and insulin we've injected. Instead we use a test called C -Peptide. So when the body stores insulin in the beta cells in the pancreas, it has the insulin model folded up with a molecule called C -Peptide which helps keep the insulin in its storage form. And when you make insulin, when your body secretes it out into the bloodstream, you chop it up and you release this molecule called C -Peptide or connecting peptide.

 

And that passes straight through the liver into the blood where we can measure it. Because we make one molecular C -peptide for every one molecule of insulin, we can just measure C -peptide in the blood because we know that that's come from our own pancreas. You don't get C -peptide in the insulin that you inject. So when Simon contacted you, you would have done pancreatic antibodies? So in that situation right at beginning, it's the antibody tests. We did measure and they were all positive in Simon's case and confirmed type 1 diabetes. So antibody tests are not perfect. So you can get...

 

positive results in people who don't have type 1 diabetes, like most of the tests we use, sometimes they can be wrong, and you can get negative results in people who do have type 1 diabetes. But in that situation, in Simon's case, you have features of type 1 diabetes, then usually even one single positive test would confirm the condition. And in fact, in Simon's case, he had three positive tests. So Angus, you've been talking about the research you've done, which is all about diagnosing people.

 

close to diagnosis. And I know you've done a lot of work on C -peptide and how to measure it and how to make it easy for doctors to measure. And I think there was a clinic in Scotland who decided, having heard you speak, to check their whole clinic, even though some of those people have been diagnosed for many decades. I wondered what the results of that was when they tested a whole clinic. One of our colleagues in Edinburgh actually started a project and they measured every single person in there.

 

their clinic. They found about 8 % of people at least were misclassified and many of those people diagnosed as type 1 who sometimes been on insulin for decades could go on and could successfully stop insulin treatments. That had a huge impact and actually led them to testing and everyone diagnosed with type 1 diabetes across Scotland and that and other research has really helped international guidelines and guidelines in England start moving away from the past where a diagnosis was always for most people only ever been based on clinical

 

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features without any testing to really move me towards saying, actually, need, particularly with your diagnosis and adult, we need other evidence. We need evidence that really is type 1 diabetes. Maybe just to finish up with, I think there is a famous politician who has gone public of having errors despite seeing the very best doctors in the country, presumably. Yes, and this story just illustrates just how hard it can be. So we had our own Prime Minister, Theresa May.

 

She lives with type 1 diabetes and she's been very open about that and very active in that area and helping charities and publicising her experience. And actually when she developed diabetes, she was initially thought, again, to have type 2 diabetes, a very similar to Simon who was treated with metformin and presumably dietary advice and told to go off and lose weight. And again, she's described this story, you're talking to the Charity Diabetes UK and their communications, you progress very, very quickly and actually.

 

very much like Simon was found to have mistype 1 diabetes. So it happens in all corners of society. It's often very challenging. isn't, when we misdiagnosis, isn't necessarily an issue of badly trained doctors or people not doing it, it's very difficult. It's often really difficult. And one of the problems is, say, to move from May's age when she was diagnosed with diabetes in her 50s, you probably would be right about 98 % of the time just diagnosing everyone as type 2 diabetes. So you can see what challenges.

 

doctors can be up against, the important thing is keeping that open mind and reconsidering if there are features or if there is progression. I don't think particularly in older adults people come into a clinic and will say immediately you've definitely got type 1 diabetes, but the important thing is recognising the uncertainty and monitoring and doing the tests and going from there. Brilliant, thank you very much Angus and I think that's a great message to go away with is that we can't be certain and therefore we need

 

to remain humble as doctors and to keep thinking, have I got this right? And be prepared to test the C -peptide for people on insulin to see if that's giving an answer that hasn't been expected. So I wonder if we'd like to bring Simon back in at this point to see if you've got any questions or discussion that you'd like to ask Angus, having heard that. Angus, what advice would you give to a patient that is perhaps

 

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uncertain in the diagnosis that they've received or is not improving. They've started perhaps a metformin regime and their condition is not improving. What advice would you give them? I think that's a very, very good question. Ultimately, the first point has to be going back to the healthcare provider and just raising that question. If you are progressing quickly, could this be type 1 diabetes? Could this be something else?

 

The key thing is if you're progressing and you're poorly controlled, because to be honest, if your glucose levels are high and not responding to treatment, you need action and you need increased treatment regardless of the diagnosis. So it's getting back to the doctors, raising the issue about treatment and raising the issue of actually could it be type one and why you think that might be or why it might be different type of diabetes. I think Angus will probably want to tell people about one calculator that he's put on the internet.

 

Yes, that's a very good point. So one of the problems of making the diagnosis of type 1 and type 2 diabetes is that lots of different features contribute a little bit. There isn't one single feature, and you yes, that's type 1 diabetes. So we're putting together things that might go in different directions. You might be quite young suggesting type 1, but you might have a high body weight and mild symptoms and maybe other things that could suggest type 2 diabetes.

 

In that situation, making a clinical diagnosis is very, difficult because you've got things pointing in different directions. So what we increasingly do in medicine these days is we use maths or simple computer programs that take lots of information together to give a most accurate prediction or most accurate diagnosis. And that's what we've done to try and improve things with diagnosis of type 1 diabetes in adults is essentially develop calculators that take simple features and combine them to give how likely type 1.

 

diabetes is. So we have an early version of that calculator on our website, the diabetes genes website at the moment. There are new improved calculators coming very shortly. to clarify there, the website is www .diabetesgenes .org and what should they search for on that? It's the type 1, type 2 calculator. But that is a very simple way of just giving a probability of type 1 diabetes. But ultimately what that allows us to do

 

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and we've tested lots of different studies now and shown it's really incredibly accurate. It's properly combine all the information to get an accurate diagnosis. If we think even with antibodies, it's not that you measure the test and they're absent, you haven't got type one and they're present or certainly if there's any one present that you have type one diabetes, the interpretation would be completely different depending on what your other features are. So even when you do a test like a digestive risk score or an antibody, you don't want to hang everything on that test. You really want to use that information.

 

and interpret in light of all the other features. And that's what these clinical calculators allow you to do. So that's the certainly a direction we think would be very helpful in the future. We're starting to test these calculators in clinical practice at the moment in primary care. Anything else, Simon, you wanted to add into the discussion? So my advice to anybody, whether it's diabetes type one, type two, or whether it's something else, is to ask the question. I think if it's in your head and

 

you have a medical professional that is listening to you ask the question because asking the question changed my life. It really did. Excellent. I think that's a great place to stop this episode. But thank you so much, Simon, for sharing your story and giving us those insights. And thank you, Angus, for the work that you're doing in helping ensure that our patients get the right diagnosis of diabetes type.

 

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It was lovely to have Simon along explaining what it was like to be diagnosed with diabetes and then initially to be thought by your doctor to have type 2 and then the battle in some ways to get it understood that he did indeed have type 1 diabetes. Yeah, absolutely. He gave a really clear description of how frustrating it was in terms of realising that things weren't getting better. He was still symptomatic on the tablets.

 

And it was only when his mum looked on the internet and found Angus that brought him to the point of getting the correct diagnosis. And it's interesting because, as he said, unlike most people with type 1 diabetes, he did have a family member with type 1 diabetes. had that direct experience and was talking to the doctors and asking the question, could this be type 1 diabetes? And I think one of the things

 

I would urge all doctors to be is humble and listen because often people's lived experiences is very valuable. Yeah, absolutely. Listening to the patient and their insights into their own condition as well and how they're feeling can be really valuable in helping provide a bit more information as to what might be going on. And it's also that ability to change over time because

 

It could well have been type 2 diabetes. Indeed, I went back to the calculator. If you put in his weight and height and age of diagnosis into the calculator, it came out saying there was a roughly 50 -50 chance that it could be type 1 or type 2. So it was reasonable to start like that. But as time goes on, and if it doesn't respond to diet, it doesn't respond to metformin, and the glucoses were rising up into the 20s, then that really is a question to say this person needs insulin.

 

have we got the diagnosis right? And then it was very interesting hearing Angus and his research about just how common it is to either get have type 1 diabetes and be misdiagnosed as type 2 or the other way around to have type 2 diabetes and be misdiagnosed as type 1. So I think some of the listeners might be quite surprised to hear how hard it is to get the correct diagnosis of diabetes.

 

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And the work that Angus has done has really helped highlight that you can't just think about one factor to get the correct diagnosis. There's actually lots of things you've got to take into consideration. Yes, we always like the simple answer. This thing has happened, therefore it must be type one or it must be type two. And that's really my take home message from what Angus has said is that there is nothing on its own except maybe being diagnosed under the age of 10.

 

which is strong enough on its own. And so therefore we must all realize that there is some doubt in that classification as type one or type two. Angus has done some lovely research really looking into the diagnostic tests. again, he underestimates quite how important he's been both nationally and globally in making C -peptide become widely used tests throughout Europe and the world.

 

also to really say how we should use antibodies and when we should use them. So he's really doing some fantastic work and I look forward to seeing what he's finding out next. We hope you enjoyed this episode and we look forward to you joining us next time.

 

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