Severe Persistent Hyperglycaemia

A very high HbA1c is an outcome. It is not an explanation.

Persistent severe hyperglycaemia is usually approached by asking what needs to change in diabetes treatment.

That is clearly important.

But when HbA1c remains extremely high despite repeated contact with diabetes services, another question becomes necessary:

Why has severe hyperglycaemia become this person's usual state?

Diabetes psychiatry approaches this by understanding both what has happened to the diabetes biologically and what has happened to the person living with it.

Start with the trajectory

A single HbA1c tells us how high someone's glucose has been recently.

It does not tell us how they got there.

For severe hyperglycaemia, one of the most useful first steps is therefore to reconstruct the diabetes trajectory over several years:

WEIGHT → DIAGNOSIS → HbA1c → TREATMENT → RESPONSE → DECOMPENSATION

This can reveal very different clinical problems.

Someone may have had type 2 diabetes for many years, initially responding well to treatment before progressive loss of pancreatic function leads to severe hyperglycaemia.

Another person may have had an HbA1c above 100 mmol/mol, responded rapidly to conventional diabetes treatment and remained well controlled thereafter.

A third may have spent several years moving between HbA1c values of 105, 115 and 125 despite repeated healthcare contact.

These are not necessarily the same problem.

The current HbA1c tells you how high the glucose is. The trajectory begins to tell you what sort of difficulty you are dealing with.

Understand what has happened biologically

In longstanding type 2 diabetes, treatment which previously worked may no longer be sufficient.

Progressive loss of pancreatic beta-cell function can eventually make insulin necessary.

But the person's understanding of their diabetes may not have changed alongside the biology.

The transition to insulin can instead be experienced as:

failure • deterioration • blame • dependency • fear

For some people, insulin has been discussed for years as the thing they should try to avoid.

When it eventually becomes biologically necessary, the treatment they now need may therefore be the treatment they have spent years hoping never to require.

A diabetes psychiatry assessment needs to understand both sides of this transition:

What has changed biologically — and what does that change mean to the person?

Severe hyperglycaemia can also develop early

Not everyone follows a slow trajectory of decompensation later in life.

Particular attention should be paid to younger people with early-onset type 2 diabetes.

Sometimes the longitudinal record shows:

obesity in childhood or adolescence

↓

dysregulated eating and metabolic risk

↓

type 2 diabetes in adolescence or early adulthood

↓

rapid treatment escalation

↓

severe hyperglycaemia in the twenties or thirties

Here, weight, eating, psychological development and diabetes may have been interacting for many years before the person reaches specialist care.

Looking backwards through the trajectory can therefore be as important as looking at the current HbA1c.

Shame, blame and diabetes

Type 2 diabetes develops within a powerful social and psychological context.

People may have spent years hearing messages about weight, food, exercise, personal responsibility and diabetes “control.”

When treatment does not work, these messages can become internalised as shame or failure.

The person may understand perfectly well what clinicians are telling them while becoming progressively less able to tolerate hearing it.

Repeated education is therefore not always the answer.

Sometimes the clinical task is to understand why diabetes, glucose, weight or insulin have become so difficult to think about.

From prescribed treatment to actual treatment

The next task is to understand what actually happens.

Not simply:

What insulin is prescribed?

but:

What insulin is taken?

Not simply:

Does the person have CGM?

but:

Do they look at it — and what happens when they see a high glucose?

Not simply:

Have they received dietary advice?

but:

What actually happens with eating during an ordinary day?

The same applies to medication, sugary drinks, sleep, activity, cognition, routines and help-seeking.

This identifies the behaviour immediately maintaining hyperglycaemia.

The psychiatric and psychotherapeutic question is then:

Why is that behaviour occurring in this person?

Bringing the diabetes and the person together

Severe persistent hyperglycaemia may involve depression, hopelessness, eating difficulties, ADHD or executive dysfunction, cognitive impairment, trauma, psychosis, self-neglect, social adversity or other psychiatric processes.

But identifying a diagnosis is not enough.

The task is to understand how it connects to the diabetes outcome.

A useful formulation should be able to describe:

what happened to the diabetes

↓

what treatment became necessary

↓

what that meant to the person

↓

what the person does in response

↓

how diabetes care changes

↓

why severe hyperglycaemia persists

This is the point at which a very high HbA1c becomes more than a number.

It becomes a trajectory that can potentially be understood — and changed.

A practical assessment framework

The Severe Persistent Hyperglycaemia Diabetes Psychiatry Assessment Framework provides a structured approach to this assessment.

It covers:

trajectory • biology • early accelerated disease • transition to insulin • shame and blame • actual diabetes behaviour • physical effects of hyperglycaemia • psychiatric assessment • relationship with diabetes • formulation • levers • appreciable change

The central question remains:

Why has severe hyperglycaemia become this person's usual state?