Hypoglycaemia When the Person Cannot Tell You

Hypoglycaemia when the person cannot tell you: test first, then think

Hypoglycaemia has a warning system, and the warning system is a sentence. I feel shaky. I’ve gone funny. Something’s wrong.

Take away the sentence and you take away the warning.

That is the whole of this guide. A person who is non-speaking, who has an intellectual disability, who has dysphasia after a stroke, who has advanced dementia, or whose usual communication is not easily read by an agency worker on a Sunday shift, has no early warning system for the most dangerous acute complication of their diabetes. What they have instead is whatever the people around them notice.

And what the people around them notice is behaviour. Which is the most dangerous possible way for a low blood glucose to present, because the disability sector has a well-developed reflex for behaviour and it is the wrong reflex.

So here is the rule, and if nothing else from this library makes it onto a wall in a house, make it this one:

Any sudden, unexplained change in behaviour or alertness in a person taking insulin or a sulfonylurea means check the blood glucose. First. Before de-escalation, before a PRN medication, before a behaviour support conversation, before anything.

It takes under a minute, it is harmless if the reading is normal, and the alternative is somebody being sedated while hypoglycaemic.

We support NDIS participants across New South Wales, including people who need glucose monitoring and insulin administered under clinical plans from their treating teams. We are not a clinical service, and none of what follows is medical advice. The person’s own hypoglycaemia protocol, written by their diabetes team, governs everything described here. If somebody you support takes insulin and does not have one in writing, obtaining it is the most important thing you will do this month.

What is actually happening

Blood glucose falls below the range the brain needs. The body responds in two stages, and the stages matter because they appear in order.

Stage one is adrenergic — the body releasing adrenaline to try to raise glucose. This produces shakiness, sweating, palpitations, pallor, hunger, anxiety, tingling around the lips. These are the classic warning symptoms, and they are mostly things the person feels rather than things an observer sees — though sweating and pallor are visible if somebody is looking.

Stage two is neuroglycopenic — the brain running short of fuel. This produces confusion, difficulty concentrating, slurred speech, clumsiness, blurred vision, odd or uncharacteristic behaviour, drowsiness, and at the severe end seizure and loss of consciousness.

In a person who can report symptoms, stage one is the alarm and stage two rarely arrives. In a person who cannot report symptoms, stage one is silent and the first observable sign is stage two — which is to say the first thing anybody notices is already the brain being affected.

That is why this population’s hypos are, on average, found later and are more severe.

There is a further problem. Repeated hypoglycaemia blunts the body’s warning response, a phenomenon called impaired awareness of hypoglycaemia. Somebody who has had frequent lows stops getting the shaky, sweaty warning at all and goes straight to confusion.

In a person who can self-report, this is detectable — they will tell a clinician that they no longer feel their lows. In a person who cannot self-report, it is undetectable by history, which means it has to be assumed as a possibility rather than ruled out. This is one of the strongest arguments for continuous glucose monitoring in this population, covered in its own guide here.

What a low actually looks like in somebody who cannot describe it

This list is the practical core of the guide. Workers should know it, and it should be specific to the individual wherever possible.

Behavioural presentations:

• Sudden agitation or restlessness
• Aggression, in somebody who is not usually aggressive
• Pacing
• Crying or distress with no apparent trigger
• Sudden withdrawal — going quiet, disengaging, not responding as usual
• Resisting care they normally accept
• Silliness, giddiness, laughing inappropriately
• Repetitive behaviour increasing sharply
• Simply being “not themselves” — which is a legitimate clinical observation from somebody who knows the person, and should be treated as one

Physical presentations:

• Pallor, especially around the face
• Sweating, particularly clammy skin when the room is not warm
• Shakiness or tremor
• Clumsiness, dropping things, unsteadiness, stumbling
• Slurred or changed speech, in somebody who normally speaks
• Glassy or vacant expression
• Drowsiness, hard to rouse
• Headache
• Yawning
• Seizure
• Unresponsiveness

The point about baseline. All of this only works against a known baseline. A person whose ordinary presentation includes repetitive movement, vocalising or periods of withdrawal needs the change identified, not the behaviour. Which is why the plan should include a written description of what a low looks like in this specific person, written by people who know them — and why continuity of workers is a safety feature rather than a nicety.

The misread that causes real harm

Here is the sequence that this guide exists to prevent.

A person with an intellectual disability on insulin becomes agitated in the late afternoon. The worker on shift is new, or agency, or busy. The behaviour support plan has a de-escalation strategy and a PRN medication for severe agitation. The worker follows the plan as written, offers quiet time, and eventually administers the PRN.

The PRN is a sedative. The person becomes drowsy, which looks like the medication working. They are put to bed.

They were hypoglycaemic.

Every element of that sequence is well-intentioned and each step follows a document. And it is a catastrophe, because a sedated hypoglycaemic person has lost the only remaining signal — their own distress — and the underlying low is untreated and still falling.

This is also a restrictive practice question. Chemical restraint is medication used primarily to influence behaviour rather than to treat a diagnosed condition, and it is one of the five regulated restrictive practices requiring authorisation, a behaviour support plan and reporting to the NDIS Quality and Safeguards Commission. A PRN sedative given to somebody whose actual problem was a blood glucose of 2.8 is a restrictive practice applied to a medical emergency.

The fix is structural, not a matter of worker vigilance. The behaviour support plan for anybody on insulin or a sulfonylurea should state, at the top, before any strategy: check blood glucose first. The two plans — diabetes management and behaviour support — have to reference each other. In our experience they almost never do, because they are written by different clinicians who never speak.

If you take one organisational action from this guide: get the diabetes plan and the behaviour support plan onto the same table and make them agree.

What the protocol generally looks like

What follows is the general shape of hypoglycaemia management as diabetes services describe it, for context. Follow the person’s own written protocol, which will specify their thresholds, their treatment and their escalation points.

The sequence is treat, then confirm, then re-treat if needed, then prevent rebound.

Treat first. If a low is suspected and the person is conscious and can safely swallow, treatment goes first. Looking for a meter while somebody deteriorates is the wrong order. A reading is useful; a delay is not.

Fast-acting carbohydrate. Diabetes Australia and diabetes services describe an initial treatment of around 15 grams of rapid-acting carbohydrate — glucose tablets, glucose gel, juice, soft drink that is not sugar-free. The person’s plan will specify what and how much.

Wait, then re-test. Typically around 15 minutes, then check again, and repeat the fast-acting carbohydrate if still low.

Then longer-acting carbohydrate. Once the glucose has come up, a sandwich, fruit, milk or the next meal, to stop it falling again. This step gets skipped constantly and skipping it is why people have a second hypo an hour later.

Then stay with them. Continue observing, keep testing as the plan directs, and do not leave somebody alone after a significant hypo.

Never by mouth if unsafe. If the person is unconscious, having a seizure, or cannot swallow safely, nothing goes in their mouth. That is an emergency: position them safely, call 000, and follow the plan for glucagon if one has been prescribed and somebody is trained and authorised to give it.

Glucagon. Prescribed for severe hypoglycaemia and given by injection or, in some products, as a nasal spray. Whether a support worker can administer it depends on the plan, training and authorisation — it is not an assumption to make in the moment. Where glucagon is prescribed, somebody on every shift should know where it is, whether it is in date, and whether they are authorised to use it. A glucagon kit in a locked cupboard that nobody can find is not a safeguard.

The dysphagia problem nobody addresses

This is the intersection that genuinely surprised us how often it is unresolved.

Standard hypoglycaemia treatment is a thin fluid or a chewable tablet — juice, soft drink, jelly beans, glucose tablets. For a person with dysphagia on thickened fluids, a glass of juice is an aspiration risk. For somebody who cannot chew safely, glucose tablets are a choking risk.

So the standard treatment is contraindicated by the person’s other condition, and the two clinical teams responsible — the speech pathologist and the diabetes team — have usually never discussed it.

What results is a house with a hypo protocol that cannot safely be followed, which means in a real hypo somebody either improvises, or hesitates, or gives something unsafe.

This needs resolving in advance, in writing, by both teams. The question to put to them is: what is the fast-acting carbohydrate treatment for this person, given their swallowing assessment, and what is the escalation point if it cannot be given safely? Options may include glucose gels, appropriately thickened preparations, or a lower threshold for glucagon and ambulance — but the answer must be a documented agreement, not a worker’s judgement at the time.

Anybody supporting a person with both dysphagia and insulin-treated diabetes should check this today. In our experience the protocol is frequently generic.

Sulfonylureas, which people forget cause hypos

A persistent and dangerous assumption is that only insulin causes hypoglycaemia.

Sulfonylureas — gliclazide, glimepiride, glibenclamide and related medicines, used in type 2 diabetes — cause hypoglycaemia too. And sulfonylurea hypos have a particular character: they can be prolonged, lasting many hours, and they can recur after apparently successful treatment as the drug continues to act.

The practical consequences:

• A person on a sulfonylurea who has a significant hypo generally needs a period of observation rather than being treated and left, and plans frequently specify a lower threshold for medical review or hospital assessment.
• A hypo that responds to treatment and then returns two hours later is characteristic, not evidence that the first treatment failed.
• Workers trained to think “no insulin, no hypo risk” will miss this entirely.

Check the medication list. If a sulfonylurea is on it, the house needs a hypo protocol regardless of whether insulin is involved.

Nocturnal hypos, which are invisible

A low that happens at 2am in a house with no overnight glucose checking is a low nobody ever knows about — and somebody can have them repeatedly for months.

The signs are indirect and get attributed to other things:

• Night sweats — damp sheets or pyjamas in the morning
• Nightmares, or crying out in sleep
• Restless, disturbed sleep
• Morning headache
• Waking confused, groggy or irritable
• Unexplained high morning readings, which can reflect the body’s rebound response to an overnight low
• Daytime fatigue nobody can explain

That last pair is the trap. A high morning reading looks like too little insulin, and the instinctive response is more insulin — which makes the overnight low worse. Working out whether a high morning reading follows an overnight low requires either an overnight check or, far better, continuous glucose monitoring.

If somebody in supported accommodation has unexplained morning highs, night sweats or morning confusion, raise nocturnal hypoglycaemia explicitly with the diabetes team. It is a specific question with a specific answer and it is rarely asked.

What makes a hypo more likely

Worth knowing so the pattern can be spotted:

• A missed or delayed meal after rapid-acting insulin
• Less food eaten than the dose assumed — which matters enormously in people with variable appetite, dysphagia, or illness
• Vomiting or diarrhoea
• More activity than usual, including the day after unusual exertion, because exercise can lower glucose for up to 24 hours
• Alcohol, which impairs the liver’s ability to release glucose and is a well-recognised cause of delayed and severe hypos
• Injecting into lipohypertrophy, which can release insulin unpredictably
• A dose error
• Hot weather or a hot bath, which can increase insulin absorption
• Weight loss, or improving kidney function, which change insulin requirements
• New medication
• Infection recovering — insulin requirements rise during illness and fall again afterwards, and a dose increased for illness that is not reduced afterwards is a classic hypo cause

Recurring hypos are a prescribing problem

A person having frequent lows does not have a behaviour problem or a compliance problem. They have a regimen that does not fit them.

The response is escalation to the diabetes team with data — and the data is what makes it work. A log showing time, reading, suspected cause, treatment and recovery for each hypo over six weeks will get a regimen changed. Vague reports that “he’s been having a few lows” will not.

The target for somebody with communication disability and limited hypo awareness is also legitimately different. Diabetes teams will often accept a slightly higher glucose target in exchange for fewer lows, where the risk of unrecognised severe hypoglycaemia outweighs the long-term benefit of tighter control. That is a clinical decision, but it is a reasonable conversation to open — and families should know it is a conversation that exists, because it is rarely offered.

What every house needs

• [ ] The person’s written hypoglycaemia protocol, current, from their diabetes team
• [ ] A written description of what a low looks like in this person specifically
• [ ] The behaviour support plan stating “check blood glucose first” before any strategy, where the person is on insulin or a sulfonylurea
• [ ] Hypo treatment physically present and in date, in a known place, in every location the person spends time — including the vehicle
• [ ] A dysphagia-safe treatment agreed in writing by both the speech pathologist and the diabetes team, where relevant
• [ ] A working glucose meter, in date strips, and a spare
• [ ] Glucagon, where prescribed, in date, findable, with trained and authorised staff rostered
• [ ] Every worker — including casual and agency — able to recognise a low in this person and act
• [ ] A clear escalation rule, including that any worker can call 000 without permission
• [ ] Every hypo logged with time, reading, cause, treatment and recovery
• [ ] A sulfonylurea check, because the risk is not insulin-only
• [ ] Overnight consideration, if there are unexplained morning highs or night sweats
• [ ] A plan review after any severe hypo

When to call 000, and what to say

Call 000 if: the person is unconscious, having a seizure, cannot swallow safely, is not improving after treatment as the plan directs, has had a severe hypo on a sulfonylurea, or the worker is unsure.

What to say: “This is severe hypoglycaemia in a person with diabetes. Their blood glucose is [reading]. They take [insulin or sulfonylurea by name]. They are [conscious/unconscious]. They have a communication disability and cannot report symptoms.”

Leading with the hypoglycaemia and the medication gets the right response. Leading with “behaving unusually” does not.