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INSIDE HEALTH

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Programme 3.

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TX:Ìý 07.10.14Ìý 2100-2130

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PRESENTER:Ìý MARK PORTER

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PRODUCER:Ìý ERIKA WRIGHT

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Porter

Coming up in today’s programme:Ìý Immunity – could a problem with your immune system be making you more susceptible to coughs and other troublesome infections or are you just unlucky? I will learning more about a simple blood test that can tell the difference.

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Thyroid problems and pregnancy – why careful control is important, and what mothers and doctors should be doing about it.

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And painkillers – I will be looking at the real story behind recent headlines suggesting that codeine based drugs pose a significant threat to the nation’s health. And, as is so often the case, the truth is quite different.

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Clip

It’s not a problem of people going in and buying a little codeine, the problem is an over-prescription of powerful opioids and those powerful opioids can lead to dependence and addiction quite quickly.

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Porter

More on that later.Ìý But first another subject that is generating plenty of headlines – Ebola. In the news again this week following the first case resulting from spread within Europe. But what’s caught our eye here at Inside Health are the predictions of just how big this could get – up to one a half million cases by early next year.Ìý But why have the estimates risen so rapidly – from just 20,000 cases a month or so ago, to well over a million today?

Dr Jimmy Whitworth is Head of Population Health at the Wellcome Trust.

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Whitworth

What has happened is that we’ve had more information come in from WHO and we’ve been able to see much more clearly what the trajectory of the epidemic is likely to be.Ìý A few weeks ago this looked as though we were getting relatively small numbers of cases week by week, fairly stable.Ìý Recently we’ve been worried to see that there seems to be a doubling time of the numbers occurring every two to four weeks.Ìý Which means that we’re in an exponential phase of the epidemic and that’s why we’re beginning to get predictions of these huge numbers.

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Porter

What sort of margin of error do you think there is looking at a prediction like that 1.5 million, I mean what’s the sort of lowest it might be on that model and the highest it could be?

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Whitworth

I think the lowest depends on how quickly we can get effective control measures into the countries concerned here.Ìý At the moment the models that we’re using are simply looking at what happens if the situation stays as it is.Ìý What we’re seeing is that roughly speaking for every one person infected that person has infected one and a half other people.Ìý So we’re having an epidemic that is steadily growing.Ìý We need to reach a situation where our control measures can bring that effective reproduction number below one and in that case we can turn this epidemic around.Ìý But at the moment we simply don’t have the scale of resources needed to be able to do that.

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Porter

So that prediction of one and a half million is based on things remaining the same as they are now, if we do more what you’re saying is we could bring that figure right down you would hope?

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Whitworth

Indeed, yes, if we do more we can bring this down.Ìý But we need to have effective control.Ìý If we have just a bit more control we will slow that rise but we still will reach one and a half million but it will be later in 2015.

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Porter

What about the chances of the virus coming to individual countries?Ìý I’ve seen some figures predicting the odds of it arriving in France, in Spain – it’s already in Spain – but the odds of it arriving here in the UK – what do you think of those?

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Whitworth

I think those are much speculative, those models and those mapping scenarios that are produced there.Ìý I think it is pretty much inevitable that we will see occasional cases occurring outside of West Africa and we will see occasional transmission events occurring from people outside West Africa.Ìý But the control measures will be sufficiently good in those countries that they’ll be able to prevent any sort of epidemic, I can be confident of that.

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Porter

So while we might expect possibly to see a case here in the UK you wouldn’t expect the virus to become embedded here in the UK and be spreading from person to person?

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Whitworth

Not at all.Ìý I think there’s two reasons for that.Ìý One, we have much better surveillance systems than are available in West Africa and secondly, what is crucial is to act very early when you see a case.Ìý This has been the big problem in West Africa, that this epidemic has been going on now for almost a year and we still don’t have effective control measures in place.

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Porter

Dr Jimmy Whitworth, thank you very much.

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Now confusion about over-the-counter painkillers. A new report from the American Academy of Neurology put the cat among the pigeons last week when it suggested that opioid based drugs kill more young and middle aged people in America than guns or car accidents. But the message became somewhat muddled here in the UK when some media substituted the weaker codeine for morphine in their coverage, and suggested the problem was with over-the-counter painkillers, rather than the stronger types prescribed by doctors like me.

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Professor Gary Franklin of Washington University was one of the authors of the report and has been concerned about the use of morphine type drugs for non-cancer pain ever since rules regarding their prescription were relaxed in the nineties.

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Franklin

The laws became much more permissive about using opioids for chronic non-cancer pain in the late 1990s.Ìý Our laws in Washington changed in 1999.Ìý And by 2001 I was starting to have cases of injured workers in Washington sent to me who had come into the system with a low back sprain and were dead three years later from an unintentional overdose of opioids.Ìý So this was a shocking event, I reported 32 cases like that in a journal in 2005.Ìý So that was the first peer reviewed report of unintentional poisoning deaths from powerful opioids that had been prescribed by doctors.

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Porter

It’s interesting Gary because the coverage here in the UK certainly, I can’t vouch for the rest of Europe, but the coverage here in the UK suggests that this is a codeine based problem and that it’s the general public who are self-medicating with these painkillers.

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Franklin

It’s not that at all.Ìý The problem is in over-prescription of powerful opioids and those powerful opioids can lead to dependence and addiction quite quickly.Ìý It’s not a problem of people going in and buying a little codeine, I’m not saying that you couldn’t take too much codeine or that the right person who might be a rapid metaboliser, a kid for example, might not get into a problem with codeine if they’re particularly sensitive.Ìý So I’m not saying that codeine is zero risk but most of the patients are dying from these very powerful drugs.

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Porter

But it’s interesting that that message seems to have got lost in the coverage here in that people aren’t questioning the prescription use of opioids, they’re questioning Joe Blogs, the public, using painkillers themselves and that’s completely wrong is what you’re saying.

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Franklin

This is part of the problem, even here it’s – people don’t like to point to their medical leaders as part of the problem, right?Ìý We trust our doctors.Ìý But in fact almost every death occurs because somebody took the painkillers the way the doctor prescribed it, it really is a supply and over-prescription problem, it is not principally a patient drug abuse problem.

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Porter

But these opioids that are causing the vast bulk of the problem are much stronger than the sort of codeine contained painkillers that you’d be able to buy yourself here in the UK over-the-counter?

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Franklin

Way stronger.

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Porter

Gary Franklin. And he wasn’t the only one surprised by how the report’s conclusions were portrayed here in the UK. Professor Andrew Moore is from the Pain Research Unit at Oxford University and he spoke to us from the noisy World Congress on Pain in Buenos Aires.Ìý

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Moore

Well I was a bit puzzled to be honest because I saw something talking about over-the-counter codeine as being the problem and it’s not about over-the-counter codeine at all, this is about prescribed strong opioids in the United States for people with completely different medical conditions, this is not people with an occasional headache, these are people with really severe long term pain problems.

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Porter

What drugs are we actually talking about?

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Moore

Well those will be medicines actually like – things like morphine, fentanyl, buprenorphine, oxycodone, which are prescribed for a variety of pain conditions and some of them are entirely appropriate like cancer pain and so on, but the area of concern at the moment is the area of chronic non-cancer pain, things like low back pain or osteoarthritis or fibromyalgia.Ìý In England, for example, in 2013 we prescribed 22 million prescriptions, amounting to just under £300 million.Ìý Now if all of the people who were taking those medicines were getting great pain relief and were functioning normally then I’d say fantastic, money well spent.Ìý The problem, and it’s a major problem this, is that there is no evidence at all that these drugs give pain relief in the long term.Ìý These drugs are no better than placebo and in some cases are significantly worse than placebo.

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Porter

So what should we be using in people with long term non-cancer pain?

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Moore

Well the answer is [indistinct word] for the most part, it depends upon the individual patient, anti-inflammatory drugs, things like ibuprofen, diclofenac and the like.Ìý And maybe some combinations.Ìý But in a sense the issue here with the opioids goes beyond the fact that they don’t work.Ìý I mean when in America and here people started talking about opioids as being a possible therapy in chronic non-cancer pain we were talking about doses of roughly equivalent to 40 milligrams of oral morphine a day, people are being prescribed up to a thousand milligrams of oral morphine a day and very often it’s well above one or two hundred milligrams and these sorts of doses cause problems.Ìý We’re way behind the United States, thank goodness, but we are looking at a huge tidal wave of problems coming our way.

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Porter

Andrew Moore and there is a link to the report that prompted all this coverage on the Radio 4 website – just click on I for Inside Health.

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Now, what do these symptoms suggest to you? Because they have certainly foxed a few doctors.

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Drabwell

My name is Josie Drabwell.Ìý When I was a little girl I had a lot of boils when I went to school and they were awful.Ìý I started to have lots of kidney infections and then I started to have strange things like coughs and colds that lasted eight to nine weeks, while other people only had them for about a week.Ìý And I went to the doctor and I was given antibiotics and then went back again after three months saying my cough hasn’t cleared up and they’d give me more antibiotics.Ìý And then I started to have severe diarrhoea, day and night, so that meant 20, 30 times.Ìý So I went to a gastroenterologist and had a lot of examinations, unpleasant ones and again they said no there was nothing wrong with me, they saw some mucus and maybe some slight infection and they’d give me a course of antibiotics.Ìý And then I started to – at the same time – have skin problems.Ìý Sort of open wounds round my neck and my eyes and in the hollows of my arms.Ìý So I was sent to an allergist who said – ah you have eczema.Ìý And then they said I had polyps in my nose and that was the cause of all my sinus problems and the catarrh etc.Ìý So I had an operation on my nose and of course it didn’t make the slightest bit of difference.

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Porter

Hardly surprising, given that Josie’s symptoms were all down to a problem with her immune system – Josie has common variable immunodeficiency or CVID. She doesn’t produce enough antibodies – a vital part of the body’s defence system against foreign invaders – leaving her open to infection. Why some people develop CVID remains poorly understood but there is a strong genetic component and it can run in families.

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Whatever the underlying trigger Josie’s struggle to get the correct diagnosis is all too typical.

Dr Siobahn Burns is Clinical Lead for Immunology at the Royal Free Hospital in London.

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Burns

CVID is the most clinically problematic of the immune disorders in adults in the UK and probably worldwide.Ìý It’s a rare diagnosis but it’s one that is important primarily because it’s often missed.Ìý And in fact the time from a patient starting to have problems with infections to being given a diagnosis with something like CVID is somewhere in the order of five to 10 years.Ìý So we frequently see patients who present at some point in adulthood, it could be any time from teens right up to people in their 50s or 60s who may have been relatively well and then start to have a lot of infections.Ìý There are also patients who looking back, even through their childhood, probably had more infections than their brothers and sisters or their friends at school but the infections become more of a problem as they get older.Ìý Infections that we tend to see and commonly associate with antibody deficiency are problems of chest infections, recurrent episodes of sinusitis, ear, nose and throat infections.

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Porter

And they’re very common infections that we see in general practice.Ìý So these people have been to see their GP lots of times?

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Burns

Yes that’s right and most people coming to our clinic will have had multiple courses of antibiotics and it’s really only when somebody is having extremely regular antibiotics that may be the penny drops that there may be something else going on here.Ìý So you’re right, none of these infections by themselves are a hallmark of antibody deficiency, it’s the frequency that they occur.

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Symes

My name’s Andrew Symes.Ìý I’m the clinical nurse specialist for immunology, I work at the Royal Free Hospital in Hampstead.Ìý I hear the same story over and over again from a lot of our patients that get referred to us.Ìý So they might go to their GP, they’ve got a productive chest, they take a course of antibiotics and their symptoms might improve very briefly but after a week or two they find the same problems coming back. ÌýTypically they’ll go back to their GP if it hasn’t worked, the GP doesn’t quite understand why, they might give them some more antibiotics and then you see the same sort of recurring cycle.Ìý And after maybe six months of this they might think okay we need to refer them to someone else, so they’ll go to a chest specialist who went find anything structurally wrong necessarily with their chest at that point.

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Porter

So they might be looking for asthma or smoking related disease or other problems like that?

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Symes

All of the usual fairly common conditions that can affect the chest or could give rise to recurrent infections.

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Burns

They may have been referred to a chest physician because the infections are most commonly in the chest, however, patients with immune deficiency can have problems with diarrhoea, so they do end up in gastroenterology clinics and they can have problems with their lymph nodes and sometimes they get mistaken for patients that might have a more serious condition like a lymphoma, so they’ll get referred to a haematologist.

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Porter

So these patients before the get to see you have been on a pretty long journey many of them?

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Burns

Yes I think that many people before they come to our clinic will have been seen by multiple other specialists in other hospitals.

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Porter

What happens if the diagnosis isn’t picked up?

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Burns

So if the diagnosis isn’t picked up then people have a long period of ill health, where they’re getting lots of antibiotics, that can lead to permanent damage in terms of scarring in the lungs in particular and we call that bronchiectasis and that is essentially if you imagine your lung is like a sponge with tiny holes, if you get repeated infections it’s like punching bigger holes into that sponge with a pencil.Ìý And that’s probably the single biggest problem in the adults that we see and that’s irreversible.

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Drabwell

I was finally diagnosed in my early 40s.Ìý I went down with the most severe form of pneumonia, out of the blue and I was on intravenous antibiotics for 10 days.Ìý And within four days I was back in hospital again with another pneumonia.Ìý And it was a friend of mine and he said do you know what I think there’s something wrong with your immune system, you ought to ask for a specialist blood test.Ìý And so I went, when the specialist came back who was a haematologist, and when he came I said maybe I ought to have this particular test.Ìý And he said – mmm that sounds a good idea.Ìý So within two days I had a diagnosis that I actually had a primary immune deficiency because I had no antibodies at all.

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Burns

Your immune system is essentially made up of your white blood cells and within that term white blood cells, that’s a broad term, there are multiple different types of white blood cells and lymphocytes are one major group and those are divided into T-lymphocytes and B-lymphocytes and the B cells make proteins that they release into the bloodstream called antibodies.Ìý And those proteins are extremely important for protecting us against infection because those proteins recognise bugs and they can latch on to bugs and they help our body to actually clear those bugs.

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Porter

And what’s the specific problem in people who’ve got this CVID?

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Burns

So what happens is that at some point they stop producing good antibodies, so they stop having these proteins.Ìý And when we measure these antibody levels or immunoglobulins, we call them, in the blood we will find the levels are low.Ìý And because they don’t produce these special antibacterial proteins then they get more infections.

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Porter

I can imagine consultations in general practice where the patient themselves may raise a question about their immune system and the GP will just do the full blood count, which of course might look normal in patients like this.

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Burns

Yeah, the vast majority of patients who come to our clinic have got completely normal full blood counts.

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Porter

So their white cells – there are enough of them and they all look normal?

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Burns

On the basis of a full blood count, yes.Ìý You have to drill down to much more specialist tests in a specialist centre to be able to work out whether every single type of white cell is actually there.

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Porter

But this immunoglobulin test is routinely available in GPs’ surgeries, we could do it at the same time as a full blood count.

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Burns

Yes absolutely and it’s cheap.Ìý It’s very robust, it’s easy to interpret the data that comes back to the GP, it’s not a complicated test.Ìý And that will diagnose antibody deficiency for the majority of patients.

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Porter

How do you treat these people?

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Burns

Mainly with immunoglobulin treatment.Ìý So we can actually replace the proteins that they’re missing by an infusion and that can mean coming into hospital or it can actually even be something that’s done at home.Ìý And the infusion is a bit like having a blood transfusion, except that the liquid that’s going in is these proteins and it can replace the antibodies relatively effectively in individuals who lack them.

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Porter

And how often would they have to receive that sort of therapy?

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Burns

So if they have the infusion given through a vein in a hospital it’s once every three to four weeks.Ìý It’s possible now to give these treatments under the skin at home as an infusion and then people who come to our clinic will do the infusions themselves about once a week.

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Porter

And what’s the long term outlook for these people, once they’re picked up and treated?

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Burns

So I think in terms of infections the long term outlook is good, so once we make a diagnosis and we start antibody therapy many people find a dramatic reduction in their infection frequency, they feel much better, so their quality of life is much better.Ìý There are some complications associated with these antibody deficiencies that relate to dysregulation of the immune system, so not only do they lack parts of their immune system but actually parts of the immune system get a bit out of order.Ìý And some of those complications which are mainly inflammation either in the lungs or the gut can be quite difficult to manage even with optimal therapy nowadays.

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Drabwell

I started my treatment and would you believe it within three months I was a different person – I could walk, I wasn’t coughing anymore, I had no infections, my diarrhoea stopped – I was a different person.Ìý And I sometimes I can get really upset by the fact that those specialists never talk to each other – the lung specialist didn’t talk to the ear, nose and throat, didn’t speak to the gastroenterologist.Ìý Now if they perhaps had communicated about my symptoms they might have come up with the idea that there was something else wrong with me.Ìý But I’m now, touch wood, never ill.

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Porter

Josie Drabwell. And Inside Health’s Dr Margaret McCartney is in our Glasgow studio.Ìý Margaret, Josie’s point about specialists talking to each other is probably more poignant today than it has ever been.

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McCartney

It is and in NHS England I think there’s an enormous problem with this, really since the Social and Healthcare Act, which has meant that because money follows the patient people have to get a new referral from their GP every time a specialist wants to refer to another specialist, even in the same hospital, even down the corridor.Ìý So rather than having joined up care where one specialist can speak to another specialist about the patient the specialist has to write to the GP, the GP then has to write to the other specialist to ask for their opinion.Ìý So not only does it slow things up it actually means that the patient is not the centre anymore, which just seems absolutely crazy because you really want to have proper patient centred care where the patient’s at the heart and everyone else is working around about them, rather than sending people back and forward, back and forward and no one’s quite sure who’s taking responsibility.

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Porter

But part of it must be the profession’s fault as well, I mean we’re so specialised now, you can have people who concentrate on – I’m a foot and ankle doctor, I do the hand.

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McCartney

I think it’s been a real double edged sword, as people have become more specialised it’s probably helped people who fit in to that specialism.Ìý But it’s probably not helped other people whose problems are spread across several areas.

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Porter

Thank you very much Margaret.Ìý And there’s some useful links on CVID on the Inside Health page of the Radio 4 website.

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Now on to another study that piqued our interest here at Inside Health.Ìý New research suggesting that pregnant women with low thyroid hormone levels were more likely to have children that were poor at maths.Ìý The implication being that lower levels of the hormone could stunt intellectual development.

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The researchers followed nearly 1200 young children until they were five and those born to mothers with low thyroid levels during pregnancy were twice as likely to fare badly in simple arithmetic tests.

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The thyroid hormone thyroxine and adequate levels of dietary iodine needed to manufacture itÌý are essential for normal brain development, particularly during the first few months of pregnancy.Ìý So how concerned should pregnant women be by the findings of this new study?

Miles Levy is a consultant endocrinologist at Leicester Royal Infirmary.

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Levy

It’s been known for a long time that very severe iodine deficiency, which is now incredibly rare thankfully, and also severe thyroxine deficiency, which is now very easily treatable, it’s been known that previously that was associated with quite profound developmental problems.Ìý But this is really about more subtle deficiencies in thyroid hormone levels.Ìý So I think it’s an interesting study but I think it’s very difficult to make sweeping conclusions because only one particular area which was subtle defect in maths in children was found, which I think you can’t really across the board say any sweeping conclusions.

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Porter

The implication from the headlines of course was that if you’re not very good at maths that there is some sort of global impairment of a child’s development but what you’re saying is we don’t know that?

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Levy

Yeah I think that’s right.Ìý This adds to the jigsaw of evidence but I think it’s very difficult to make too many sweeping statements.Ìý These sorts of studies are fraught with epidemiological problems, in other words there may be confounding variables, such as the social factors, parental IQ, genetic factors, many things other than thyroxine and iodine, which might be making a false association.Ìý Severe iodine deficiency is very, very rare and it occurs now in landlocked countries that are well away from the sea, so iodine tends to come from the sea, so you get it in the food from things like fish, oily fish, also it’s present in dairy products.Ìý There probably is a surprisingly high amount of very mild iodine deficiency.Ìý There was a study in the US that showed as much as nearly half the population was subtly deficient in iodine.Ìý But severe deficiency is very, very rare.Ìý So that’s in terms of iodine.Ìý In terms of thyroid disease itself, having an underactive thyroid gland is actually relatively common, about 1-2% of the population will have an underactive thyroid gland.Ìý So if you’re someone that is on thyroxine the best thing to do is plan in advance, like all things in life, so if you are planning to become pregnant the best thing to do is go and see your GP, get a blood test and make sure you’re on enough thyroxine, so a typical dose would be something like 100 micrograms of thyroxine.Ìý And the important thing is once you know you’re pregnant and once you’ve had your scan often you’re already about 10 or 12 weeks and that could be too late.

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Porter

What about the implications for other women who may not know that they’re iodine deficient, they don’t have a diagnosed thyroid problem, should we go looking for trouble?

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Levy

Well this is a bit of a can of worms and in fact one of my colleagues from Cardiff, John Lazarus, did a very ambitious study really looking at 20,000 women to see whether screening thyroid disease in pregnancy made a difference. So he looked at a large number of women and they measured blood tests in the first trimester and those were the subtle deficiencies, they gave half of them thyroxine and the other half they were a little more lax with the treatment, it would have been standard care.Ìý But they found that there was absolutely no difference in IQ whilst the baby had reached three years of age, so their conclusion at that stage was, from their results, there was no advantage of screening pregnant women.Ìý However, and most pregnant women just to want to make sure they’ve got the wind going in the right direction and got everything optimised as possible, it makes perfect sense to me to make sure that you are iodine replete, in other words you’ve got plenty of iodine in the diet.Ìý So my suggestion to any pregnant woman is not to worry about this but make sure that your diet is adequate in fish, in dairy products such as yoghurt, milk, eggs, interestingly organic milk seems to have less iodine than non-organic milk, probably because the way - the agricultural or farming side of it.Ìý But just make sure that you’ve got an iodine sufficient diet and that should be plenty to make sure there are no problems during pregnancy.Ìý I would advise against taking high iodine content over-the-counter preparations, for example some people something called kelp, which is something that has a very high content of iodine from brown seaweed and too much of a good thing can cause problems, so very high doses of iodine can actually trigger an overactive or an underactive thyroid.Ìý So I think like all things in life be sensible but make sure that your diet is adequate in iodine, just as there are many other minerals it’s important to be adequate in before pregnancy.

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Porter

Dr Miles Levy. And if you have an existing thyroid problem you should speak to your doctor before trying for a baby so you can make sure your thyroxine levels are optimised.

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Just time to tell you about next week when I will discovering the origins of the term hypochondriac, and looking at the latest options for helping women struggling with symptoms of the menopause – is HRT really that bad?

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ENDS