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FAQs about type 1 diabetes

The initial response to a diagnosis of type 1 diabetes is often extremely emotional. It is not uncommon to experience emotions such as shock, anger, denial, guilt, sadness, despair. This page is dedicated to answering frequently asked diabetes questions following diagnosis.  To find out more about type 1 diabetes research and JDRF activity check out our regularly updated research and news sections of this website. You can visit our type 1 diabetes glossary if you are unsure what something means. 



 

What are the different types of diabetes?

Type 1 (juvenile)

Type 1 diabetes can occur at any age, but is most commonly diagnosed from infancy to the late 30s.  With this type of diabetes, a person’s pancreas produces no insulin.  It occurs when the body’s own defense system (the immune system) attacks and destroys the insulin-producing cells in the pancreas. What causes the immune system to do this is not entirely known. People with type 1 diabetes must inject insulin several times every day.

Type 2 (adult-onset)

Type 2 diabetes usually affects those over 40. People with type 2 diabetes have a pancreas that either doesn’t make enough insulin or doesn’t make insulin that the body can use properly. Some people are treated with oral drugs or insulin, but many can control their diabetes by closely controlling their diet, exercising and self-monitoring their blood glucose.  

Gestational

Gestational diabetes usually only affects women during the pregnancy. This type of diabetes affects about two to five per cent of pregnant women. Women who have had gestational diabetes have a higher risk of eventually developing type 2 diabetes. 

What are the warning signs of type 1 diabetes?

Type 1 diabetes is when little or no insulin is produced by the pancreas because of an autominnune response that attacks the insulin producing beta cells. When insulin isn't present, your body can't convert sugar into energy. Resulting in your body trying to flush out the excess sugar and because sugar can't be used as energy, fat reserves are used instead. These create some or all of the symptoms below. Visit what is type 1 diabetes for more information.

Symptoms of type 1 diabetes

  • extreme thirst
  • frequent urination
  • tiredness
  • an increased appetite
  • unexpected and sudden weight loss
  • sudden vision changes
  • fruity odour on breath (ketotic breath)
  • heavy or laboured breathing
  • and stupor or unconsciousness

Some or all of these symptoms may occur suddenly over days or weeks.

If you, or someone you know is experiencing these symptoms you must go to your doctor immediately. If left untreated, type 1 diabetes may be fatal. 

Type 2 diabetes also has similar symptoms but they tend to develop slowly over the course of months and years. Therefore it is difficult  to detect type 2 in the early stages. 

Testing for type 1 diabetes

Testing for diabetes (type 1 or 2) is a simple blood test. A drop of blood is drawn from the finger tip and analysed by a blood glucose meter. For information on what these results mean have a look at our optimal blood glucose (sugar) range information.

A another blood test can be carried our to determine if your body is still producing insulin. This test looks for c-peptide, a protein that is created by the pancreas along with insulin. A lack of c-peptide is an indicator that not enough insulin is being produced. 

Have you or someone you know been recently diagnosed with type 1 diabetes? Order one of our free resource packs for children and adults

How is type 1 diabetes treated or managed?

Because the body of someone with type 1 diabetes doesn’t produce insulin, it has to be replaced by other means. At present, it is usually given by regular injections or by a continuous infusion system, such as from an insulin pump. A healthy diet and physical activity, promoting growth and normal weight, are seen as a crucial part of the treatment, in addition to insulin injections. Regular monitoring of blood-glucose levels is necessary so that insulin can be adjusted for food and activity levels. The aim of the treatment is to maintain blood glucose within the normal range of 4 to 7 mmol/L for as much of the time as possible. Basic information on how to control type 1 diabetes is normally given at the time of diagnosis.

An important element of type 1 diabetes management is to have regular check ups to establish how the body is coping. In addition, there will be an annual check up at the hospital where comprehensive tests will be carried out. This annual check up will also include a discussion of how type 1 diabetes is affecting daily life and an opportunity to ask questions.

What is the optimal blood glucose (sugar) range?

Blood-glucose levels are measured in units called mmol/L (pronounced milli-moles-per-litre) everywhere in the world, apart from the USA. That’s why you’ll occasionally see strange blood glucose readings like 140 or 220 in books or on the internet. To convert the USA scores (mg/dl) back to mmol/L simply divide the USA figure by 18.

Check with your doctor about the individual blood glucose you should aim for. In general, optimal blood glucose goals are:

Before meals: 4-7 mmol/L

At bedtime: 6-10 mmol/L

Before exercise: 5-15 mmol/L

You may need to consult your doctor and change your treatment plan if:

  • Blood–glucose is consistently lower than 4 mmol/L or higher than 10 mmol/L before meals.
  • Blood glucose is consistently lower than 6 mmol/L or higher than 12 mmol/L at bedtime.
  • Blood glucose goals may be modified for children and others who are at greater risk of hypoglycaemia.

To maintain ‘normal’ blood-glucose levels, you now need to do the job of your pancreas. This means injecting insulin several times a day, regularly monitoring blood-glucose levels and making constant decisions about how much insulin to inject to keep your blood glucose as close to the normal range as possible. One of the reasons to do this is to help you feel your best and give you more energy. Aiming for ‘normal’ blood-glucose levels will also help prevent or delay the development of the long-term health complications of diabetes.

The Good News...

Research shows that people who check their blood-glucose levels regularly and adjust their insulin, diet, and exercise to achieve better blood glucose level readings, reduce their risk of developing damage to those organs vulnerable to complications.

Constant high blood glucose is toxic to the body. Cells in your brain, nerves, eyes, kidneys and blood vessels readily absorb glucose without insulin being present — these organs in particular are vulnerable to complications.

How to know if your diabetes is under control

Checking the level of glucose in your blood and keeping a record of the levels is an important part of taking care of your diabetes. This allows you to identify the patterns of high or low blood-glucose levels. The information will also help you and your doctor or diabetes team to balance food, exercise and insulin doses.

Ideally you should aim to do at least four blood glucose checks a day. To get the most out of monitoring, your diabetes team may advise you to check your blood-glucose levels before and then two to three hours after food. It is also a good idea to monitor before, during and after exercise.

If your blood glucose level is high, such as at the time of diagnosis, or when you are unwell, you should also monitor for ketones. You can do this by checking your blood using a blood glucose meter that also measures for ketones or by checking your urine. Ketones in the blood or urine can also indicate that your insulin levels are too low and that additional insulin needs to be taken as a matter of urgency so that your body can use glucose for energy rather than fat.

There is no avoiding the fact that pricking your finger can be painful. There are various finger pricking devices on the market and you may find one more comfortable than another. Most devices allow you to adjust the depth of the needle if you are not getting a large enough drop of blood. The tips of your fingers are also more sensitive so try pricking your finger off to one side. Also be careful how vigorously you pump your finger for blood once your finger is pricked. This can squeeze blood into the surrounding tissue, causing bruising and discomfort. It might be encouraging to know that monitoring your blood glucose becomes less painful over time!

Tips to Improve Your Blood Glucose Control

  • Keep a good record of your blood-glucose levels
  • Review your blood glucose records regularly to look for patterns of highs/lows
  • Work with your doctor or DSN to make adjustments to your insulin intake, diet and exercise until your control improves
  • Learn what causes highs and lows for you. The more you recognise what triggers highs/lows, the better you will be able to adjust your insulin, carbohydrate intake or exercise to avoid problems
  • Don’t expect perfection! Just aim to get more of your readings within target
  • Ask for help from your doctor or diabetes healthcare team when you need it.
JDRF has a global research portfolio aiming to cure type 1 diabetes one day. In the meantime, JDRF is also funding research to improve treatments for people with type 1 today. Please help us continue this vital work by donating to type 1 research now

What is the ‘honeymoon phase’?

In a person who has type 1 diabetes, the insulin-producing beta cells in the pancreas are destroyed. However, during the period immediately following diagnosis most people go through a "honeymoon phase" in which their existing beta cells still function, producing some insulin. A number of research projects are currently underway, which hope to preserve the function of these existing beta cells past the honeymoon phase.

What foods should a person with type 1 diabetes eat/avoid?

People with type 1 diabetes can eat most foods and don’t require any special foods. The ‘diabetic diet’ only needs to be a healthy diet that provides easily controllable and accessible fuel for your body. Limiting the amount of fat eaten is important for those with diabetes, because high cholesterol and diabetes are two of the four risk factors for developing heart disease.

These are some other tips about what to eat and avoid: 

  • Rather than frying foods, bake grill, poach, or sauté them in non-stick pans. 
  • Vegetables can be steamed or microwaved. 
  • Buy tinned fish in water instead of oil and tinned fruit in fruit juice instead of syrup.
  • Dairy products such as butter, milk, cheese, yoghurt and ice-cream are fine for people with diabetes, but lower fat versions will help make managing the condition easier.
  • Low-fat meat such as turkey, fish and chicken are better for you than red meat, which is high in fat. Remember to remove skin before cooking.
  • Change diets focused on animal protein to one that is rich in complex carbohydrates, such as starches that are found in breads, cereals, starchy vegetables, legumes, rice and pasta. 
  • When possible choose whole-grain equivalents of foods such as cereals, breads, brown rice, bulgur and barley.
  • Eat plenty of fresh vegetables and fruits, complete with the skin. Avoid overcooking vegetables. 

Find our about tips on healthy eating.

How will type 1 diabetes affect my life?

The initial response to a diagnosis of type 1 diabetes is often extremely emotional. It is not uncommon to experience emotions such as shock, anger, denial, guilt, sadness and despair. Parents and carers will often feel these emotions more keenly and more immediately than the child.

At the same time as the emotional impact, there are a lot of practical issues that have to be dealt with. In the short term there is a lot of new information to take on board. There are also new skills to learn such as injecting, monitoring and choosing foods.

In the longer term, there may be fears for the future, including the long-term health consequences of having type 1 diabetes. Learning as much as possible and talking to others with the condition will increase your feelings of control and choice.  Although daily life will always be more complicated, by managing type 1 diabetes, many people have proved that it is no barrier to living an active, healthy and fulfilling life.

Parents and carers may want to find a way to meet their emotional needs or to increase their resourcefulness at a time of intense change. One way might be to join an organisation where they can meet others in the same situation or join in with activities such as helping to promote diabetes awareness or research for the cure.

We organise a number of Type 1 Discovery Days throughout the year where those affected by type 1 are invited to come along to learn more the latest research update.  It’s a great way to also meet other people affected by the condition.  Find out more about our upcoming Type 1 Discovery Days.

How did I/my child get type 1 diabetes?

Type 1 diabetes is an ancient condition documented as far back as 1500 BC. While we know much more about type 1 diabetes than we did then, there is still much we do not know. To find and understand the cause of type 1 diabetes more research is needed.

Currently, it is thought to be caused by an auto-immune response that may be triggered by a viral or other infection, which damages the insulin producing cells in the pancreas. This in turn will eventually lead to type 1 diabetes.

However, because the precise causes of type 1 diabetes are not known and there is a much greater awareness of type 2 diabetes, many myths about type 1 diabetes are in circulation. Type 1 diabetes is not caused by eating the wrong foods or too much sugar. In fact, it isn’t caused by anything that the child or parents did or didn’t do.

Is type 1 diabetes hereditary?

Some people are also unsure about whether type 1 diabetes is hereditary or not. While 90% of people who develop type 1 diabetes have no relative with the condition, genetic factors can pre-dispose people to developing type 1 diabetes. Certain genes called HLA markers are associated with type 1 diabetes risk. A child born with such markers will have the same risk of developing type 1 diabetes as a child with siblings with type 1 diabetes. However, having the HLA marker alone is not enough to cause someone to develop type 1 diabetes – it is thought that an additional trigger causes type 1 diabetes to develop.

How long will I/my child have type 1 diabetes? Can it be outgrown?

At the moment there is no cure for type 1 diabetes and it is a lifelong condition. This is why, as well as funding research into finding the cure for type 1 diabetes, JDRF supports research that aims to uncover the causes of type 1 diabetes and develop new treatments.

You can find out more about how JDRF supports and funds type 1 diabetes research at our regularly updated research and news sections of this website.

What is the life expectancy of someone with type 1 diabetes?

The life expectancy of a person with type 1 diabetes is on average 15 years shorter than someone not affected by type 1 diabetes. There is no such thing as an ‘average’ person with type 1 diabetes though, as each person’s experience of living with type 1 diabetes is different. Type 1 diabetes is difficult to deal with and the potential consequences are extremely concerning, but research has already led to great improvements in treating type 1 diabetes and quality of life. Future advances in technology and continued research will eventually result in type 1 diabetes being curable.

What’s the latest type 1 diabetes research information?

JDRF is the leading charitable funder of type 1 diabetes research in the world. Over the last 40 years we have funded £1 billion of research to find the cure for type 1 diabetes and have been right at the heart of the delivery of advances to the field.

 We aim to fund the best research in the world and at the moment we are funding many projects from basic laboratory research to clinical trials that are trying to develop ways to cure, treat and prevent type 1 diabetes and its complications. We are especially interested in funding research that we think has ‘translational’ potential to turn from an idea in the lab to a drug that can help people with type 1.

 You can find out more about the types of research we fund and some of our current projects in the research and news sections of this website.

How can I help find the cure for type 1 diabetes?

You can help JDRF find the cure for type 1 diabetes by making a donation or volunteering with us. Every donation you make is hugely valuable and used effectively and efficiently to help fund the best possible research available.

JDRF also has great opportunities for volunteers, allowing you to get actively involved in helping us find the cure for type 1 diabetes, so why not get involved? While our fundraising events allow you to help JDRF fund research, they are also a great way to meet other families living with type 1 diabetes.   

How common is type 1 diabetes?

There are about 400,000 people living with type 1 in the UK at the moment including about 29,000 children. Type 1 diabetes is classically diagnosed in childhood but recent reports have suggested that as many as half of all cases of type 1 may be diagnosed in adulthood.

About 97% of cases of diabetes in children are type 1 diabetes. Type 1 is five times more common in children than bacterial meningitis and one of the most common chronic diseases in childhood. In fact it is more common in children than cancer, cystic fibrosis, muscular dystrophy and multiple sclerosis.   

References

Why are people with diabetes advised to get the flu vaccine?

For otherwise healthy individuals, flu is an unpleasant but self-­limiting disease with recovery usually within two to seven days. But the risk of serious illness from flu is higher among those with underlying health conditions such as diabetes

The Health Protection Agency found that people with diabetes are approximately 6 times more likely to die if they develop flu than individuals with no underlying health conditions. The seasonal flu vaccine offers extra protection against the virus. The Department of Health recommends that all people with type 1 make an appointment with their GP surgery as early as possible in the flu season as they can. 

The vaccine is free to all people with type 1 diabetes.

What is diabulimia?

Increasing media attention is been given to 'diabulimia.'  This is the common term used when people with type 1 diabetes alters insulin dose to control weight. If a person with type 1 does not get enough insulin to allow glucose into to the cells, the body begins to use its own fat and muscle stores for energy. Some people with type 1 use this process to control weight.

The process of the body using too much of its own fat and muscle for energy produces ketones as a side effect. Too many ketones in the blood can lead to diabetic ketoacidosis (DKA). In addition, the build-up of glucose in the blood due to lack of insulin can increase the risk of developing the complications of diabetes later in life.  

While for some the use of insulin omission may be intermittent there are others who are trapped in this behaviour long term. Diabulimia is a serious, pervasive and complex psychiatric condition and should be treated as such, with understanding and compassion but also with urgency. 

Type 1 can also foster anorexic behaviours. When in a hypo the body sends signals to the brain to consume sugar as quickly as possible. This can become problematic and lead to binge/purge cycles commonly associated with bulimia. Other aspects of type 1 care can contribute to eating disordered behaviour. To achieve good blood glucose control it is sometimes necessary to follow a strict diet and exercise regime that can prove much to cope with at a time when most adolescents crave more control and independence.

Although recognition of this condition is relatively new, help is available.  If you want to know more, or are worried that you or a loved one might be affected, contact Diabetics With Eating Disorders (DWED)