Caroline's 'death is, in every sense, tragic'

When ‘Irish Times’ journalist, Caroline Walsh, died after a short illness, her family needed answers about her condition

Caroline enjoyed very good health up to a few months before her death on December 22nd, 2011.

She was a keen walker and cyclist, very active on both fronts. She went for health check-ups regularly, including two thyroid examinations in recent years, the last of which was in July 2011.

These were not prompted by any particular symptoms of malfunction but by concern, informally raised by several people, among them medical practitioners, about the prominence of her thyroid.

While these examinations showed her thyroid to be multinodular, there was no immediate health risk. However, it was signalled that such a threat might arise down the line, so she was advised to continue with periodic check-ups.

A middle ear infection, developed on holiday in August 2011 and treated with antibiotics from the outset, took some six weeks to clear. In mid-September she began to suffer from insomnia, waking frequently and very suddenly with what she described as “a racing” sensation. She then developed a hand tremor and spoke increasingly of her inability to think clearly, describing it as a “sort of murkiness”.

Following tests in October, thyroid malfunction, hyperthyroidism, was diagnosed and treatment, Carbimazole (Neomercazole, begun.

This treatment also included medication to alleviate associated symptoms, primarily anxiety and sleeplessness. When, after three weeks or so, there was no improvement, she was referred by our GP to the Beacon Clinic in November, but discharged that night on the basis that her thyroxin levels did not appear to warrant urgent medical attention.

In the course of the weekend to follow, her symptoms became more pronounced. I recall her using both hands to steady her teacup on the Sunday morning, eventually forced to leave it down because of the way the tea lapped over the sides.

Her level of agitation, exacerbated by breathing difficulties and chronic sleeplessness, was extremely worrying.

Diagnosis

On Monday morning, utterly exhausted, confused and very fearful, she was admitted to the Blackrock Clinic where, following an extensive series of thyroid tests, she was diagnosed with both hypothyroidism and psychosis. Thyroxin levels, initially above normal, were now below.

Physically restless, very agitated and deeply concerned about what was happening to her, it was recommended that treatment be continued in a specialist facility.

Accordingly, she was transferred to St John of God’s Hospital where a course of treatment for anxiety and psychosis was begun.

When her thyroid function began to settle, her medication, Carbimazole, was discontinued, but TFTs (thyroid function tests) continued, showing flux within the “normal” range. When, a fortnight or so later, tests revealed a hypothyroid profile requiring treatment, she was again prescribed Carbimazole.

By that stage Caroline was thought to have made sufficient progress, both in her own estimation and in that of her doctors, to begin planning to go home. This was organised on a piecemeal basis, first a day, then a weekend, with final discharge on December 8th.

Among the directives given for her continued recovery was the need to “liaise with both the endocrinologist and ENT surgeon to enable a decision around thyroid”.

Throughout her time in hospital, Caroline remained lucid and relatively communicative. She kept an occasional journal, including details of her consultations. Here, there are several entries noting the consultant’s view the root cause of her illness as thyroid malfunction.

Pleased to be home, she began preparing for Christmas. Energy levels were low and responses uncharacteristically slow, but her determination to get back on track was such that she soon established a routine which included reading, trips into town, Christmas shopping and so forth.

It would be misleading to say she was her usual ebullient self. Her weight loss, 22lb since the beginning of October, was apparent. Her rings were loose on her fingers, so much so that she had to stop wearing them.

Also apparent was her lack of concentration, which, given how focused she normally was, made her almost unrecognisable at times. There was, however, no indication in the world that things would take the terrifying course they did less than two weeks after she arrived home.

We were all set to head off for Christmas the following day. Caroline had everything lined up in the hall – presents, foodstuffs, her books, papers, journals – all ready to go. She was busy on several fronts, writing last-minute Christmas cards, making lists of things she still had to do, wondering periodically if she should dash into town to get this or that.

There was nothing to suggest that she was destined, that afternoon, to set out alone on a journey, a journey which ended in St Vincent’s hospital, where, following her rescue off Dún Laoghaire pier, she struggled for life for almost three hours.

Shocking death

It was only in the aftermath of her shocking death that we – our children, Matt and Alice, and I – began, through a variety of medical channels, to learn something of the illness from which she had been suffering.

Crucially, we were alerted by a practitioner, who knew Caroline, to the notion of a “thyroid storm”.

Anxious to have as full a picture as possible, we began to collect and collate data, which by September included her previous health profile, the autopsy report, hospital records, referral letters and so forth.

Among the significant data here was the discovery, in the course of the autopsy, that her thyroid was 13 times larger than normal. We presented this data to a specialist in the field [psychiatry], who informed us that it was “a classic case of what, in bygone days, would have been termed myxedema dementia, likely to be described nowadays as a thyroid-induced psychosis”.

Furthermore, it was suggested that Caroline might have been genetically predisposed to thyroid disease. This led us to make inquiries, soon to learn that her paternal grandmother died in the course of thyroid surgery. She too was in her late 50s.

It is easy in hindsight to piece it all together, but the speed at which the illness had taken hold left little room for reflection or ancillary investigation.

Still, if I were to fix on one point of information which would, in the course of those weeks, have been of real value, then it is the now seemingly established view that there is no known correlation between the extent of hypothyroidism and psychiatric symptoms that subsequently develop.

In other words, once hypothyroidism gives rise to psychiatric symptoms, measuring the extent of that thyroid malfunction will not provide a reliable indication of when or how severely those symptoms will kick in.

Given the nature of Caroline’s death and the paucity of knowledge, in general, about the condition, it was assumed by many that she had a history of depression.

This erroneous assumption even found its way into the autopsy report, but was corrected in the light of data provided by practitioners familiar with her very good health record.

There is much to be grateful for in the care and concern displayed by the medical personnel with whom she came in contact.

Lesson to be learned

If there is a lesson to be learned, then it is certainly not a new one. It requires examination of the system as a whole. Communication between the various treatment agencies is necessarily compromised when, as in Caroline’s case, there were six such agencies involved.

The time-honoured sealed letter, often brought by the patient from one treatment centre to the next, may not be the best way of building a comprehensive profile of a patient. For instance, the “personality type” ascribed to Caroline, at one point, was “shy and reserved”, the very opposite to what she was.

The absence of an accurate profile can frustrate best practice. And this is particularly so in cases where, like Caroline’s, there is a physiological basis to a psychiatric condition.

Equally, relying on a patient, referred for psychiatric care, for accurate family medical background data is questionable.

Regrettably, data in this regard, provided by Caroline in the initial stages of admission to both the Blackrock Clinic and St John of God’s Hospital, when she was very distressed and confused, was, in several instances, far from accurate.

We miss Caroline every minute of every day. She was the life and soul of the family, a deeply loved and loving parent and wife, the instigator of countless adventures, which we now recall with affection and gratitude.

Her boundless energy, her extraordinary ability to engage in conversation, her formidable intellect, her humour and, above all, her unremitting generosity of spirit all combine to compound the sense of loss we feel. Her death is, in every sense, tragic.

We have, however, the legacy of our happy lives together to build on and for that we will remain forever grateful to Caroline. We just hope that this brief account of her illness might be of benefit to others.