Type 1 diabetes is different to its more common counterpart, type 2 diabetes
Whilst the major symptoms of diabetes are similar for type 1 and type 2, it is worth knowing the specific symptoms of type 1 diabetes as well as more general diabetes symptoms
- Also see: Type 1 diabetes
- The 4Ts – symptoms of type 1 diabetes
- Emergency diabetes symptoms
- How long does it take to develop type 1 symptoms?
- Can a blood glucose meter help to diagnose type 1 diabetes?
- Understanding Adult-Onset Type 1 Diabetes
- Clarifying LADA (Type 1 Diabetes in Adults)
- Type 1 diabetes as common in adults as children, but many adults misdiagnosed
- Prevention of complications
- What is DAFNE?
The 4Ts – symptoms of type 1 diabetes
Some of the most noticeable and most common symptoms of type 1 diabetes are:
- Excessive thirst
- Unusually high levels of urination
- Feeling tired all the time
- Loss of muscular bulk and unexplained weight loss
The main symptoms of type 1 diabetes are often referred to as the 4Ts of type 1 diabetes
Other symptoms which may accompany the above symptoms are:
- Itchiness around the penis or vagina
- Blurring of vision (caused by dryness of the eyes)
- Unexpected cramping
- Skin infections
Emergency diabetes symptoms
Seek urgent medical attention if diabetes symptoms combine with any of the following:
- A serious loss of appetite
- Nausea and vomiting
- A temperature
- Pains in the stomach
- A fruity, chemical smell on the breath (most often likened to pear drops or nail varnish)
The symptoms above could be a sign of diabetic ketoacidosis (DKA), a dangerous condition that can be life threatening if medical treatment is not provided immediately.
Around 1 in 4 people diagnosed with type 1 diabetes are suffering with ketoacidosis at the time of diagnosis. Recognising the 4 main symptoms of type 1 diabetes can help to get a diagnosis before ketoacidosis sets in.
- Read more on ketoacidosis
How long does it take to develop type 1 symptoms?
The symptoms of type 1 diabetes in children and young adults tend to develop quickly over a few weeks or few days.
Type 1 diabetes is a dangerous condition if it is left untreated for too long. It is therefore important to seek a diagnosis from your doctor if you or your child is showing the symptoms of type 1 diabetes.
Type 1 diabetes can develop at any age. Adults may develop a specific form of type 1 diabetes known as LADA (latent autoimmune diabetes of adulthood)
LADA tends to develop more slowly than type 1 diabetes in children and young adults and people with LADA may sometimes be misdiagnosed as having type 2 diabetes.
Download a FREE symptoms chart for your phone, desktop or as a printout.
Can a blood glucose meter help to diagnose type 1 diabetes?
A blood glucose meter may be helpful in indicating whether you or a family member may have diabetes.
It is not essential to have a blood glucose meter but it may be considered useful in a family with a history of type 1 diabetes or autoimmune conditions.
A blood glucose result, taken over 2 hours after eating, of over 7.8 mmol/l could indicate a presence of diabetes.
If high results are being recorded 2 hours after eating for consecutive meals, contact your GP who will be able to carry out a diagnosis
It is important that devices used to draw blood from fingers are not shared to prevent the risk of blood borne illnesses.
- See our guide on how to do a home blood glucose test
Understanding Adult-Onset Type 1 Diabetes
When then 34-year-old Rebecca Gill was pregnant with her second child in 2004, high blood sugar levels led to a diagnosis of gestational diabetes, an often-temporary form of diabetes that can occur in pregnant women.
After Gill’s son was born, her blood sugar levels returned to normal, and her doctors assumed that the diabetes was gone. But another blood test given several weeks after she gave birth showed that her diabetes problems had returned. She was referred to an endocrinologist who ran tests and eventually diagnosed her with latent autoimmune diabetes in adults, or LADA.
“Thankfully, I was one of the lucky ones whose endocrinologist had experience with LADA,” says Gill, an internet marketing consultant in Commerce, Mich.
LADA, also known as type 1.5 diabetes or double diabetes, is a form of diabetes in which an adult’s immune system destroys beta cells in the pancreas, cells that produce insulin. Insulin is a hormone that converts the body’s blood sugar to energy. Without enough insulin, blood sugar levels can become too high, resulting in nerve damage, blindness, and other problems if untreated.
LADA is similar to type 1 diabetes in that both forms are caused by the immune system mistakenly attacking beta cells. However, most diabetics with LADA are diagnosed after age 30, while the most common form of type 1 diabetes usually develops in children or adolescents.
LADA: A Different Diabetes
Because LADA appears in adulthood, it may be initially mistaken for type 2 diabetes, but it is different. People who have LADA are often initially misdiagnosed with type 2 diabetes, says Priscilla Hollander, MD, PhD, an endocrinologist at Baylor University Medical Center in Dallas.
“Many people with LADA present symptoms a little like type 2s,” Dr. Hollander explains. “Their sugar may start to pick up a little bit. They may be thought of as an early type 2 or a thinner type 2.”
But there are specific differences. For one, LADA tends to have a faster progression than type 2 diabetes, in which high blood sugar problems can take months or even years to develop. Most people with type 2 diabetes are also overweight, while people with LADA are often at a healthy weight. Another distinction is that the drugs typically used for type 2 diabetes patients, such as metformin, will eventually stop working for LADA patients as their immune systems destroy more insulin-producing cells.
One of the tests used to diagnose LADA measures the amount of c-peptides in the blood. C-peptides are byproducts of insulin production, so low levels can indicate that your body is not producing much insulin on its own. Another blood test often given to LADA patients looks for the presence of insulin-destroying antibodies.
Many people diagnosed with LADA can manage their diabetes without insulin injections for a certain period of time because their pancreas is still producing some insulin. They may be given oral sulfonylurea drugs, which encourage the pancreas to produce more. But within several years, most LADA patients will need insulin injections. Some will need several per day, while others can mange with just one.
Some LADA diabetics, like Gill, use an insulin pump, a small, device that automatically delivers insulin doses through the abdomen on a pre-programmed schedule. Gill switched to the pump after accidentally injecting too much insulin, necessitating a trip to the emergency room.
“Some people struggle with where to put it or what to do with the cord, but it keeps you healthier and enables you to function better,” Gill says.
Gill has launched a Facebook group for people with LADA where more than 100 members share stories, trade advice, and provide support for each other. “We’re all experiencing the same thing,” Gill says. “People come on there and they’re scared and anxious. We let them know that this is manageable.”
Clarifying LADA (Type 1 Diabetes in Adults)
When I met fellow D-writer Catherine Price for coffee recently, I immediately gushed about everything we had in common: two brunette journalist-types living in the SF Bay Area, both diagnosed a few years ago with LADA (or so I thought). Catherine gave me a sideways look, and then began grilling me about the formal definition of LADA. I had to admit, it’s pretty fuzzy. Today, I gratefully present you with the results of her investigation into this mysterious acronym:
A Guest Post by Catherine Price, of ASweetLife
Having had Type 1 diabetes for nearly ten years now, I can handle most diabetic terms and acronyms thrown my way. Hemoglobin A1c? Got it. Carb ratios? Insulin sensitivity? No problem. But one term has continued to confuse me: LADA.
Short for Latent Autoimmune Diabetes in Adults, it’s also known as Slow-Onset Type 1 Diabetes, Type 1.5 Diabetes or, occasionally, Late-Onset Autoimmune Diabetes of Adulthood. Four names for the same thing? That’s never a good sign.
Until recently, the most common definition I’d heard for LADA was that it was a Type 1-like form of diabetes diagnosed in adulthood. But I didn’t understand the details. Does being diagnosed with Type 1 diabetes as an adult automatically mean you have LADA? Is there a difference between LADA and the classical definition of Type 1?
To answer these questions, I spoke with Marie Nierras, the program officer of the genetics programs at Juvenile Diabetes Research Foundation. She cut right to the chase. “There is a lot of confusion about LADA,” she told me, “but Type 1 diabetes and LADA are not the same thing.”
Here, to get us started, is how JDRF’s Adults With Type 1 toolkit defines LADA:
“Type 1 diabetes diagnosed in adults over 30 may be Latent Autoimmune Diabetes in Adults (LADA), sometimes known as Type 1.5 Diabetes. LADA is often misdiagnosed as type 2 diabetes because of age; however people with LADA do not have insulin resistance like those with type 2. LADA is characterized by age, a lack of family history of type 2 diabetes, a gradual increase in insulin requirements, positive antibodies, and decreasing ability to make insulin as indicated by a low C-peptide.”
And here’s some further detail from the National Institutes of Health:
“Most people with LADA still produce their own insulin when first diagnosed, like those with type 2 diabetes. In the early stages of the disease, people with LADA do not require insulin injections. Instead, they control their blood glucose levels with meal planning, physical activity, and oral diabetes medications. However, several years after diagnosis, people with LADA must take insulin to control blood glucose levels. As LADA progresses, the beta cells of the pancreas may no longer make insulin because the body’s immune system has attacked and destroyed them, as in type 1 diabetes.”
Many people assume that the first line of the JDRF definition — i.e. an older age at diagnosis — is LADA’s most important characteristic. But it turns out that’s not true. According to Nierras, the key difference between Type 1 diabetes and LADA is not the age of the person when they’re diagnosed, but the gradual way the disease progresses. Whereas people with classical Type 1 diabetes tend to be completely insulin-dependent within twelve months after diagnosis (usually less), people with LADA can often survive without artificial insulin for years.
As Nierras explains, “It’s as though they have Type 1 diabetes, but something slows down the disease so they can stay off of insulin much longer than the classically definable Type 1.”
With that said, age does play a part: for reasons not entirely understood, the older you are when you’re diagnosed with autoimmune diabetes (i.e. Type 1), the longer it usually takes for your immune system to kill off all your insulin-producing cells. A five-year-old with autoimmune diabetes typically becomes insulin-dependent more quickly than a 45-year old — a phenomenon researchers are struggling to understand. But it’s possible, says Nierras, for that same 45-year-old to present with a classic, fast-developing case of Type 1, or for a younger person to present with signs of LADA. According to Nierras, our tendency to emphasize age comes from arbitrary lines drawn by clinical trials — since most trials for Type 1 diabetes only accept people under 30 years old, new cases of Type 1 in people over 30 often are tossed into a generic LADA “junk drawer,” even though age itself is not the defining characteristic of the disease.
All of this might sound like semantics if you already know you have insulin-dependent diabetes. But for people whose diabetes is not quite so clear-cut, LADA is associated with a big, under-acknowledged problem: thanks to the ambiguity of its symptoms, it’s often misdiagnosed as Type 2 diabetes.
Imagine you’re a doctor and a patient comes in, 40 years old, not obese but also not lean, with high blood sugar but no signs of diabetic ketoacidosis (a warning sign for Type 1). What’s more, the patient responds well to meal planning and diabetes pills (both of which, according to Diabetes Monitor, are sometimes effective in early stages of LADA). If you aren’t aware of this weird hybrid — I like to think of LADA as the Prius of diabetes — wouldn’t you think she had Type 2?
Unfortunately, this example is not purely hypothetical; according to the National Institutes of Health, up to 10 percent of people who have been diagnosed with Type 2 diabetes may actually have LADA. This can lead to months, if not years, of incorrect treatment — which puts people at risk of going into diabetic ketoacidosis and developing long-term complications (not to mention spending a long period of time feeling inexplicably rotten).
So what’s the bottom line? If you’ve been diagnosed with Type 2 diabetes and your ability to control your blood sugar with oral medications and lifestyle changes has decreased over time, you might want to be tested for LADA — especially if you are normal weight and don’t have any relatives with Type 2 diabetes. (Tests for LADA are the same as for Type 1 — a blood test to see if any autoantibodies are present, and a measure of C-peptide levels to determine how much insulin you are producing.) The bad news of LADA is that if you have it, you will eventually need to take artificial insulin. But there’s positive news as well: once you’ve been diagnosed correctly and start the right treatment, you can get back on the road to good health.
Postscript: Researchers are very interested in the connection between Type 1 diabetes and LADA, but there are only a few clinical trials in progress. Hopefully that will soon change — and in the meantime, you can find one exception here.
Additional information about LADA:
Wow, thank you Catherine. Now I’m confused as ever, though. Guess I really am a classic Type 1 diagnosed super-late — or somewhere in that LADA “junk drawer” you mentioned (?)
Strict control of blood sugar appears to be key. Researchers observed a 44 percent reduction in overall risk of death for every 10 percent reduction in a patient’s hemoglobin A1c, a test used to determine a person’s average blood sugar levels over the prior three months, Dagogo-Jack said.
The Scottish study looked at the life expectancy of nearly 25,000 people with type 1 diabetes in Scotland between 2008 and 2010. All were 20 or older. There were just over 1,000 deaths in this group.
The researchers compared the people with type 1 diabetes to people without the chronic disease. Researchers used a large national registry to find and analyze these patients.
The investigators found that men with type 1 diabetes had an average life expectancy of about 66 years, compared with 77 years among men without it. Women with type 1 diabetes had an average life expectancy of about 68 years, compared with 81 years for those without the disease, the study found.
Heart disease accounted for the most lost life expectancy among type 1 diabetics, affecting 36 percent of men and 31 percent of women. Diabetes damages the heart and blood vessels in many ways, mainly by promoting high blood pressure and hardening of the arteries, Colhoun said.
However, those younger than 50 appeared to die most often from diabetes management complications.
In men, about 29 percent of life expectancy lost for people under 50 was due to diabetes management-related complications like diabetic coma or ketoacidosis, a condition in which the body suffers from high levels of poisonous acids called ketones. These ketones are created when the body burns fat for energy, because low insulin levels are preventing the conversion of blood sugar into fuel. In women under 50, that number was 22 percent, according to the study.
Intensive treatment of their diabetes might have extended these lives, Dagogo-Jack suggested.
In his study, more than 1,400 people with type 1 diabetes were randomly assigned to either receive intensive management of their diabetes or normal therapy. People who got intensive therapy kept near-constant tabs on their blood sugar levels, and made quick adjustments to their insulin therapy to keep their blood sugar as close to normal as safely possible, the study reported.
Type 1 diabetes can reduce life expectancy if onset occurs when the patient is young, claims a study recently published in The Lancet.
Obese people are at significantly greater risk of health conditions such as heart disease and diabetes
In India, diabetes numbers are surging. Concerningly, rates are increasing among India’s young population. It was recently revealed that around 97,000 children in India suffer from type 1 diabetes. In Delhi alone around 32 children per every 1,000 are affected by the disease.
The Lancet study presented results which indicate that life-expectancy for individuals with early-onset type 1 diabetes is, on average, sixteen years shorter than people without the disease. Compared to people diagnosed later in life, an early-onset individual was found to have a reduction in life expectancy of around ten years.
The study, conducted in Sweden, used observational investigations that followed over 27,000 individuals with type 1 diabetic individuals and more than 135,000 individuals in a matched control group for an average of ten years.
The findings of the study suggest that individuals diagnosed before the age of ten have a thirty-times greater risk of serious cardiovascular outcomes like heart attack. This was found to be lower than people diagnosed between ages 26 and thirty whose risk levels are around six times higher.
Additionally, early-onset sufferers are four times as likely to die from any cause, with seven times the risk of dying from cardiovascular disease compared to their diabetes-free counterparts. Again, this difference was found to be less prominent in people with late onset diabetics with a three-fold risk of dying from any cause compared to their peers without diabetes.
The authors stress the requirement to use cardioprotective measures such as statins and blood pressure lowering drugs as soon as possible in this high-risk population.
In India the early intervention and therapies to address the diabetes is vital. Evidence suggests that the Indian population is at a higher risk than that of most other countries due to a genetic predisposition to diabetes.
The average age of onset of in India occurs between 25 and 34, nearly two decades before the age of onset in western nations. This indicates a considerable role for the genetic risk factor present in the Indian population. The genes involved have been proposed as mediators for insulin release. Any alterations in these genes could therefore play a large part in increasing the risk of developing diabetes.
Type 1 diabetes has been shown in studies to be increasing in prevalence by three to five percent per year in India. The results of the new study highlight the need for proper management of the disease through early intervention and appropriate lifestyle changes. Spreading awareness of the disease must also be a priority in order to address these rising numbers.
Heart risks were also particularly high for women, with those diagnosed before age 10 facing a 60-fold higher risk of heart disease and 90-times increased risk of heart attack than matched controls.
Men with young-onset diabetes have a 17 times greater risk of developing heart disease and 15 times higher risk of having a heart attack in early adulthood compared with those in the general population.
Prof Sattar added: “People with early-onset diabetes should more often be considered for cardioprotective drugs such as statins and blood pressure lowering medication when they reach 30 to 40 years of age.
“Currently, only around 10 per cent – 20 per cent of individuals with Type 1 diabetes are taking statins by the age of 40.”
Dr Araz Rawshani, from the University of Gothenburg, who co-led the research, said: “Age at disease onset appears to be an important determinant of survival as well as cardiovascular outcomes in early adulthood, warranting consideration of earlier treatment with cardioprotective drugs.”
Diabetes: Four common symptoms
Diabetes is a lifelong condition that causes a person’s blood sugar level to become too high.
There are two main types – type 1, when the body’s immune system attacks and destroys the insulin producing cells, and type 2, when the body does not produce enough insulin, or the body’s cells don’t react to insulin.
Type 2 is more common that type 1, with 90 per cent of all diabetics in the UK having type 2.
Going to the toilet a lot more than usual, especially at night, is a common sign of diabetes.
Urinating frequently is also a sign of other medical issues, such as prostate problems, so be sure to visit your GP to have diabetes confirmed.
Excessive thirst, otherwise known as polydipsia, is a classic sign of diabetes.
It is linked to frequent urination. As excess glucose builds up in the blood, the kidneys are forced to work extra hard to filter and absorb the excess sugar, and if they can’t keep up, the excess sugar is excreted in to urine, taking along fluids from body tissue.
This triggers more urination, which may leave diabetics dehydrated.
High levels of blood sugar can cause the lens inside the eye to swell, which can result in blurred eyesight.
Very low blood sugar levels can also cause blurred vision.
If you aren’t trying to lose weight, and you notice a loss of muscle bulk or the numbers on the scales drop, this could be a sign of diabetes.
This happens because insufficient insulin prevents the body from getting glucose from the blood to the cells to use as energy.
The body will then start burning fat and muscle for energy, causing weight loss.
Type 1 diabetes as common in adults as children, but many adults misdiagnosed
Research by the University of Exeter Medical School using UK Biobank found that adults are as likely to develop type 1 diabetes as children, with more than 40 per cent of type 1 diabetes cases occurring after the age of 30.
But many of those with type 1 diabetes after the age of 30 are thought to have type 2 diabetes at first, and not initially treated with insulin to control blood sugar levels. Previous published research by the University of Exeter Medical school found that, on average, it took a year for those with type 1 diabetes who had been misdiagnosed with type 2 to be put on insulin.
Among the adults with type 1 diabetes to have been misdiagnosed is Theresa May, the Prime Minister, who was initially told by doctors she had type 2 diabetes and given tablets which did not control her blood sugar.
Distinguishing between type 1 or type 2 diabetes matters as it affects the treatment needed. In type 1 diabetes immune cells destroy the body’s insulin producing beta cells and people need to be injected insulin to control blood sugar levels. With Type 2 diabetes there is still insulin produced so it can be treated initially with diet and tablet therapy.
Type 1 diabetes has been typically viewed as a disease of childhood and adolescence as it accounts for more than 85 per cent of diabetes in under 20s.
But type 1 cases are harder to recognise and correctly diagnose in adults because far more people develop type 2 diabetes in later life. Type 2 accounts for 96% of diabetes cases between the ages of 31 and 60, the research shows.
A crucial clue to the possibility of adult-onset type 1 diabetes is the failure of tablets to control blood glucose. Adult-onset type 1 patients are also likely to be slim compared to type 2 patients who are often obese.
Exeter University’s diabetes research team concluded that, although much less common than type 2 diabetes in adulthood, it is crucial that type 1 is diagnosed and treated correctly as it can be life threatening. They found that one in nine of the adult onset type 1 diabetes were admitted to hospital with diabetic ketoacidosis, a potentially fatal condition that develops when type 1 patients are not given insulin.
The study, Frequency and Phenotype of type 1 diabetes in the first six decades of life: a cross-sectional, genetically stratified survival analysis from UK Biobank, published in the Lancet Diabetes & Endocrinology, is the first study to use a novel genetic analysis to identify type 1 diabetes in adults. This allows them to identify cases of type 1 diabetes not picked up by the patients’ doctors.
Dr Richard Oram, a senior lecturer at the University of Exeter and Consultant Physician, said, “Diabetes textbooks for doctors say that type 1 diabetes is a childhood illness. But our study shows that it is prevalent throughout life. The assumption among many doctors is that adults presenting with the symptoms of diabetes will have type 2 but this misconception can lead to misdiagnosis with potentially serious consequences. The Prime Minister is an example of someone who was misdiagnosed in this way at first. This study should raise awareness that type 1 diabetes occurs throughout adulthood and should be considered as a diagnosis.”
Professor Andrew Hattersley, Professor of Molecular Medicine at the University of Exeter and Consultant Diabetologist at the Royal Devon and Exeter NHS Foundation Trust, said, “Type 1 diabetes is often mistaken for type 2 in adults. The diagnosis of type 1 diabetes in middle and old age is very difficult because almost all patients with diabetes at this age have type 2. Failure to recognise that the diabetes is type 1 rather than type 2 and give appropriate insulin treatment can be dangerous. Type 1 diabetes should be considered for any patient who is rapidly failing to respond to increasing doses of tablets especially if they are slim.”
The study was funded by the Wellcome Trust and Diabetes UK.
Dr Emily Burns, Head of Research Communications at Diabetes UK said, “Type 1 diabetes is much more common than type 2 diabetes in children and young adults. With increasing age, type 2 diabetes becomes more common, making type 1 diabetes less easy to identify. While more research is needed to understand the realities of misdiagnosis, we’d ask healthcare professionals to have this insight in mind: don’t rule out type 1 diabetes after the age of 30.”
Case study: Helen Philbin
Misdiagnosis led to weight loss and vomiting for Helen
Helen Philbin knew something was amiss with her diagnosis of type 2 diabetes. Slim and active, she felt her lifestyle could not have triggered the condition. More worryingly, the metformin she was prescribed was only worsening her symptoms. She continued to lose weight and had regular bouts of vomiting.
It was only when she took part in the Start Right study, led by the University of Exeter, that she discovered that she actually had type 1 diabetes and had been on the wrong medication for a year. She switched to insulin injections and soon the vomiting stopped and her weight began to stabilise.
Helen, a dental hygienist from Torquay, said: “Having the wrong diagnosis was extremely frustrating. I just knew it wasn’t right. I’m an active person. I’m always running around with my two young kids and I walk the dog every day.”
Helen had just turned 40 when she visited her GP after experiencing extreme thirst. Although she was underweight, her blood test strongly indicated diabetes. She was diagnosed with type 2 and prescribed metformin, and sent on a course to learn about lifestyle factors including a low-sugar diet. “All the other people on the course were in their mid 60s and overweight,” said Helen. “I was 5’10” and 9.5 stone. I stood out like a sore thumb. When I raised it with nurses or my GP, I was told that type 1 diabetes is always diagnosed in childhood, so I had to be type 2. I felt like I was banging my head against a wall.”
Helen took the lifestyle advice seriously. She cut out carbs from her diet almost completely to get better blood sugar control — but she began vomiting up to four times a week. “It was horrible,” she said. “Even a single piece of toast would send my blood sugar levels through the roof, and I was losing even more weight.
“I’m so pleased I was invited to take part in the trial and I got the right diagnosis. It’s such a relief and it’s made such a difference. I’m fine now. I haven’t had a single episode of vomiting since switching to insulin, and I’m now gaining weight. My year on the wrong treatment was awful. I hope this research ensures more people can get the right treatment more swiftly.”
This insulin regimen tends to be referred to as multiple dose insulin (MDI) therapy. The use of continuous subcutaneous insulin infusion (CSII or pump) therapy is increasing, particularly in infants and young children where it has become almost routine. In adults, CSII therapy is not first line, and is reserved for people with specific complicating features such as disabling recurrent hypoglycaemia, hypoglycaemia unawareness, and clinical scenarios where MDI therapy is not achieving glycaemic targets.
In late onset type 1 diabetes, assuming the individual is otherwise cognitively and physically well, the management is no different. With the less abrupt onset there is often a prolonged ‘honeymoon’ phase after diagnosis when endogenous insulin production still provides a significant contribution to glycaemic control. In our unit we use this period to focus on prandial insulin adjustment and carbohydrate counting skills with the endogenous insulin providing the background cover. Injected background insulin is then introduced as soon as we notice a rise in fasting blood glucose outside the target range. This helps to embed early skills in carbohydrate counting and prandial insulin dose adjustment.
In elderly patients with cognitive impairment or physical disability that prevents them from selfmanaging effectively, the management regimen has to be simplified, and this is often associated with overall glycaemic control that is less tight. Twice daily mixed insulin can be given, usually in fixed doses, and the mainstay of glycaemic control then becomes dietary regulation and restriction that can adversely affect quality of life. Research into the artificial pancreas, an insulin pump, which infuses insulin at a constantly varying rate in response to feedback from a subcutaneous continuous glucose monitor, is proceeding rapidly, but we are not there yet.
Prevention of complications
Complications of type 1 diabetes fall into two categories. These are firstly acute complications of insulin deficiency and insulin replacement; namely diabetic ketoacidosis (DKA) and severe hypoglycaemia (SH). The second category is endorgan complications that develop due to glucosemediated vascular damage, most notably in the eyes, kidneys, general circulation and extremities. Endovascular deterioration in type 1 diabetes also contributes to increased incidence of cardiovascular and cerebrovascular events. The mainstay of management is empowering and training people with type 1 diabetes to self-manage their condition optimally to minimise their risk of developing any of these complications. The barrier to optimal management is the mismatch between the freedom and spontaneity of a non-diabetic lifestyle compared with a life dominated by decisions on whether to eat more, eat less or change the insulin dose. Out-patient training courses are available; the gold standard recommended by NICE is DAFNE training (dose adjustment for normal eating), and people should have access to this training from 6-12 months after diagnosis.1
What is DAFNE?
DAFNE training originates from a German insulin teaching and training programme devised by Professor Michael Berger and his wife Ingrid Mülhauser in the 1980s.2 DAFNE education has been available to patients in the UK since 2001 and is delivered by local diabetes teams who have been trained through the DAFNE NHS consortium. Courses are delivered in over 70 diabetes services across the UK; and in Australia, New Zealand and Kuwait. It involves a five-day training course for people with type 1 diabetes that can be delivered either Monday-Friday, or one day a week over five weeks.
There is a lot to learn, and anecdotal feedback suggests that older people prefer the five-week format with a slower pace of learning and chance to absorb and process new information before the next week’s lesson. There are eight people on each course and much of the benefit relates to participants learning from each other as well as from the educators. Although the NICE guidance recommends a DAFNE course within 6–12 months of diagnosis this depends on how rapidly beta cell failure is occurring, and may be better delayed in late onset type 1 diabetes until the patient is more fully dependent on exogenous insulin. Furthermore, there are legions of long-diagnosed adults with type 1 diabetes who gain tremendous benefit from a DAFNE course even if it was not available for them at the time of their diagnosis.
Participants use two different types of insulin injected on average five times daily: background intermediate acting insulin twice daily on waking and retiring, and quick acting insulin before eating carbohydrate (figure 1). Meals or snacks that do not contain carbohydrate generally do not require any quick acting insulin to be injected. Eating food containing carbohydrate requires a dose calculation, which relates to the quantity of carbohydrate and the personal insulin to carbohydrate ratio. Several models of blood glucose meters now have ‘bolus calculators’ within them to assist with dose calculation. Participants can therefore eat freely and flexibly without diabetes related restriction, and can adjust their daily routine to incorporate irregular mealtimes and exercise whilst maintaining good glycaemic control.
The DAFNE course provides evidence-based training in the use of algorithms for insulin dose adjustment during sickness, exercise, coping with the effects of alcohol and eating out.3 Ongoing research has shown huge savings for the NHS4 in terms of reduced emergency treatment costs from DKA and SH for people who have completed DAFNE training.5 Reports of benefits for participants in terms of quality of life, reduced depression and anxiety scores, and reduced severe hypoglycaemia continue to be published.6
Regular audit of UK DAFNE graduates (people with type 1 diabetes who have completed a DAFNE course) is performed annually showing overall improvement in HbA1c at 12 months, reduced severe hypoglycaemia, restoration of hypoglycaemia unawareness and increased proportion of graduates with HbA1c under 58mmol/mol (presented at DAFNE Collaborative meeting June 2016, data available on request). There is no upper age limit for participants on DAFNE—just a requirement for an open mind, willingness to learn new skills, and ability to understand some simple arithmetic with the help of a calculator if necessary. We looked specifically at our national database in relation to age of participant and how long they had diabetes before undertaking DAFNE. We confirmed that there was no link between duration of diabetes and deriving benefits from DAFNE—the oldest participant was 74 and had type 1 diabetes for 55 years.7
These cartoons from the DAFNE education portfolio illustrate the patterns of insulin over 24 hours in a person without diabetes eating three meals (A) and in a person with diabetes injecting insulin using the DAFNE regimen (B) demonstrating the similarities.
Comments from participants on DAFNE courses are perhaps the most moving and convincing feedback. Here are just a few:
- “DAFNE has quite literally transformed my life —if only it had been available when I was first diagnosed”
- “DAFNE has given me my life back”
- “The course was hard work—I hadn’t been in a classroom for over 30 years—but it was honestly the most useful week I have ever spent in my life.”
Contact your hospital diabetes team to find out whether there is DAFNE course provision in your area. More patient testimonials at: www.dafne.uk.com
Dr Helen E Hopkinson, Consultant physician, Glasgow Chair, DAFNE UK Executive Board
Conflict of interest: I am paid 12 hours a month by Northumbria Healthcare Trust for work associated with chairing the Executive Board of DAFNE. This is an NHS consortium subject to NHS financial governance regulations and run on a not-for-profit model to support the delivery of DAFNE training to healthcare professionals and patients throughout the UK. Central DAFNE receives current sponsorship from Lilly and Abbott (and previously Novo Nordisk and Sanofi) to supplement some of the costs of educating healthcare professionals.
1. NICE Guideline NG17 Type 1 diabetes in adults. August 2015 https://www.nice.org.uk/guidance/NG17 (last accessed 31/08/16)
2. Mühlhauser I, Jorgens V, Berger M, et al. Bicentric evaluation of a teaching and treatment programme for type 1 (insulindependent) diabetic patients: improvement of metabolic control and other measures of diabetes care for up to 22 months. Diabetologia 1983; 25: 470–76
4. NICE. Quality and Productivity: Proven Case Study. Improving the quality of care for patients with type 1 diabetes: dose adjustment for normal eating (DAFNE) 2013. Available at http://www.evidence.nhs.uk/qipp (type ‘DAFNE’ into the search tool)
5. Elliott J, Jacques RM, Kruger J, et al. Substantial reductions in the number of diabetic ketoacidosis and severe hypoglycaemia episodes requiring emergency treatment lead to reduced costs after structured education in adults with Type 1 diabetes. Diabetic Medicine 2014; 31(7): 847–53. http://onlinelibrary. wiley.com/doi/10.1111/dme.12441/epdf (last accessed 30/08/16)
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