Living with diabetes

Diabetes has to be managed on two timescales at once. There is what can go wrong today — glucose falling too low, or rising with ketones — and there is what can go wrong over decades, in the eyes, kidneys, nerves, heart and feet.

Both are far more preventable than they were a generation ago, and the reason is not that people have become more disciplined. It is better treatment, better monitoring and better organised care. Worth saying plainly at the outset: complications are not a verdict on anyone's willpower, and framing them that way is both inaccurate and one of the reasons people avoid appointments.

Monitoring, and what has genuinely changed

The defining change of the last decade is that most people with type 1 diabetes no longer test by pricking a finger several times a day. A small sensor worn on the arm or abdomen reads glucose continuously and sends it to a phone or reader, showing not just a number but which way it is heading and how fast.

UK guidance now reflects that. Everyone with type 1 diabetes, adult or child, should be offered a glucose sensor, with a choice between real-time continuous monitoring, which can alarm when glucose is falling, and intermittently scanned monitoring, often called flash, which gives a reading when the sensor is scanned. Finger-prick testing remains available for anyone who prefers it or cannot use a sensor. Sensors are also available to people with type 2 diabetes who use insulin.

Beyond that are hybrid closed loop systems, widely reported as an artificial pancreas: a sensor and an insulin pump that talk to each other, the pump adjusting insulin delivery automatically in response to the readings. NICE has recommended these for people whose glucose remains difficult to control despite a pump or a sensor used well, with children and young people, women who are pregnant or planning to be, and those with disabling hypoglycaemia prioritised. The rollout across the NHS is running over five years rather than immediately, because of the staffing and training it needs — so availability depends on area and on where someone sits in that priority order.

One thing to be clear about. There is no device that measures glucose through intact skin with a beam of light. Non-invasive optical glucose measurement has been promised for decades, nothing has ever been approved for it, and products advertised online as doing it — watches, rings, clips — do not work. It is among the most persistent false claims in this field, and acting on a reading from one of them is dangerous for anyone using insulin.

HbA1c, and the number that gets quoted

Glucose readings show a moment. HbA1c shows a trend: glucose attaches to haemoglobin in red blood cells and stays attached, so measuring how much is glycated gives an average over roughly the preceding two to three months. It is usually measured every three to six months.

In the UK it is reported in mmol/mol. Older writing, and most American sources, give it as a percentage, which is a frequent source of confusion:

• 48 mmol/mol (6.5%) and above — the level at which diabetes is diagnosed.
• 42 to 47 mmol/mol (6.0 to 6.4%) — the high-risk range, discussed under risk factors for diabetes.

Targets after diagnosis are individual, and this is widely misunderstood as a single number everyone should hit. A lower target reduces long-term complications; it also increases the risk of hypoglycaemia. For an older person, or someone who has lost their awareness of hypos, or someone living alone, a deliberately higher target is the safer choice rather than a failure. That trade-off is a conversation with the diabetes team, not a score.

Sensor users also get time in range — the proportion of the day spent between agreed limits — which captures something HbA1c cannot. Two people with identical HbA1c can have completely different days, one steady and one swinging between high and low.

Hypoglycaemia

Low glucose is a risk for people treated with insulin and for those taking sulfonylureas. It is not a risk of diabetes in general: someone managing type 2 with diet, or with metformin alone, does not usually get hypos.

In the UK the working threshold is 4 mmol/L. The early signs are shakiness, sweating, hunger, a racing heart, irritability, difficulty concentrating, pallor and tingling lips — though they vary between individuals, and much of the skill of living with insulin is knowing one's own.

Treatment is fast-acting carbohydrate, followed by something longer-acting once the glucose has come back up, and the diabetes team gives specific instructions on amounts. A severe hypo — where someone becomes confused, unable to swallow safely, or unconscious — needs help from another person and is a medical emergency; glucagon is prescribed for this and household members are shown how to use it.

Two things are worth reporting rather than absorbing. Hypos that keep happening are a signal that something in the regimen needs changing. And awareness can fade over years of diabetes, so that warning signs arrive later or not at all — which is both dangerous and, to a degree, reversible if the team knows.

Diabetic ketoacidosis

When there is not enough insulin, the body breaks down fat for fuel and produces ketones, which make the blood acidic. This is diabetic ketoacidosis, it develops over hours to days, and it is life-threatening.

It occurs mainly in type 1 diabetes, and it can occur in type 2, particularly during serious illness. The warning signs are rapid breathing, breath smelling of pear drops or acetone, vomiting, abdominal pain, severe thirst, drowsiness and confusion. It needs immediate hospital treatment.

Two things protect against it. Sick-day rules, which every diabetes team provides and which are the thing to find before they are needed: illness raises glucose and raises insulin requirements, so insulin is never stopped because of not eating, and ketones are checked. And ketone testing strips kept in the house, so the question can be answered rather than guessed.

Ketoacidosis is also how a great many people are diagnosed in the first place. Close to a quarter of children and young people newly diagnosed with type 1 diabetes in England and Wales are identified only once they have developed it, which is the reason the warning signs set out under diabetes are worth knowing before anyone has a diagnosis.

The long-term complications, and what reduces them

Persistently high glucose damages small and large blood vessels. The consequences show up in predictable places, and all of them are substantially preventable.

Eyes. Diabetic retinopathy damages the retina and causes no symptoms until it is advanced, which is why it is screened for rather than waited for. Everyone with diabetes aged twelve and over is invited to annual diabetic eye screening — a separate programme from an ordinary sight test, using photographs of the retina, and not a substitute for either. People with diabetes are also entitled to free NHS sight tests.

Kidneys. Checked twice a year, by a blood test for kidney function and a urine test for protein, because early kidney damage is silent and treatable when caught.

Nerves and feet. Nerve damage reduces sensation, so an injury can go unnoticed, and reduced circulation means it heals badly. That combination is why foot problems in diabetes escalate as they do, and why an annual foot check with referral to a podiatrist where needed is one of the more valuable things in the whole review. Any new break in the skin, redness, swelling, or change in shape or colour of a foot warrants being seen promptly rather than at the next appointment.

Heart and circulation. Here the glucose is not the main lever. Blood pressure and cholesterol matter at least as much, which is why they are checked at every review and treated in their own right. Stopping smoking does more than any of them.

The annual review

UK care is built around a set of checks that should happen every year, and knowing the list is useful because parts of it are quietly skipped: HbA1c; blood pressure; cholesterol; kidney function by blood and urine; a foot and leg check; eye screening; weight; support to stop smoking; a personal care plan agreed rather than handed over; access to a structured education course; and emotional and psychological support, which is the one most often missing and the one people most often need.

The education courses are worth asking about by name, since they are offered unevenly — DAFNE for type 1 diabetes, teaching insulin dose adjustment around real food, and DESMOND and similar programmes for type 2. Specialist referrals — to an ophthalmologist, podiatrist or dietitian — are part of the entitlement rather than a favour. Children and young people are under paediatric care until eighteen.

Remission in type 2 diabetes

This is a genuine development and is routinely overstated.

The DiRECT trial put people with type 2 diabetes on a low-calorie nutritionally complete diet for three to five months, then reintroduced food with continuing support. At one year, around 46 per cent were in remission — HbA1c below 48 mmol/mol with no diabetes medication for at least two months — against 4 per cent on standard care. The result tracked weight lost closely: 86 per cent of those who lost fifteen kilograms or more achieved remission, 57 per cent of those who lost ten to fifteen, and 34 per cent of those who lost five to ten.

Three qualifications matter. It is remission, not cure: the diabetes can return, particularly if weight returns, and annual checks and eye screening continue regardless. It works best earlier after diagnosis rather than later. And it does not apply to type 1 diabetes at all, which is an autoimmune condition and not reversible by diet in any degree.

The NHS in England runs a low-calorie diet programme along these lines for some people with type 2 diabetes, through referral. It is a supervised programme with meal replacements and monitoring, not something to improvise — and anyone on glucose-lowering medication who cuts their intake sharply without adjusting it risks a hypo.

Driving

This is poorly known and legally binding. Anyone who starts insulin must tell the DVLA and their insurer. Any driver must also report impaired awareness of hypoglycaemia, or more than one severe hypo while awake within twelve months.

For insulin-treated drivers of cars and motorcycles, the rules are specific:

• Check glucose less than two hours before setting off, and every two hours while driving.
• Above 5.0 mmol/L to drive. At 5.0 or below, eat something and check again. Below 4.0, or feeling hypo, do not drive.
• After treating a hypo, wait 45 minutes after glucose has returned to at least 5.0 before driving.
• If a hypo begins at the wheel: stop as soon as it is safe, switch off, remove the keys, move out of the driver's seat and treat it.
• Carry a meter and strips. A sensor may be used for car and motorcycle driving; for buses and lorries, finger-prick testing only.

The rules for bus and lorry licences are stricter throughout, and a single severe hypo needing help — including one during sleep — must be reported and means stopping that class of driving.

Prescriptions

In England, anyone treated for diabetes with medication, rather than by diet alone, is entitled to free prescriptions for everything, not only the diabetes medicines. It requires a medical exemption certificate, applied for through the GP practice, and a good many people who qualify pay for years without realising. Prescriptions are free for everyone in Scotland, Wales and Northern Ireland.

What not to spend money on

Diabetes attracts more product claims than almost any other long-term condition: supplements said to lower glucose, diets said to reverse type 1, devices said to read glucose without touching the skin, and clinics offering to withdraw medication. The common feature is that they are sold to people who have been told their condition is permanent and would very much like that not to be true.

Weight loss genuinely does put type 2 diabetes into remission in a substantial minority of people, which is why the distinction matters: that is a supervised programme with measured outcomes, not a supplement. Nothing taken instead of insulin is safe for type 1 diabetes under any circumstances. The broader question is covered under alternative therapies.

See also diabetes for the rest of this section.