Move to Norfolk 

In May, armed with copies of all previous blood results, I arrived for my first appointment with my new medical practice in Norfolk. Blood tests were done … but not all of those requested by Dr W as I was told that the practice did not do GGT, LDH and AST tests.

Two weeks later, in June, I saw another GP, outlined my recent history and related the one reference to AIH. Dr P’s reply was emphatic, “You absolutely do not have Autoimmune Hepatitis and you would not want it”. This was tempered by further comments: my results were reducing and were “10% off normal”; he thought one “marker” needed review and was considering repeating blood tests in three months’ time. He was weighing up whether to refer me to a Consultant Hepatologist or to manage me within the medical practice. After deliberating, he decided – very fortunately – to send my “story”, as he put it, to a Consultant.

I was immensely relieved to be told that I did not have a severe liver disease.

Perversely, I was curious to learn something about the condition that I didn’t have and discovered that some seemingly minor things I’d experienced and “written off” – including infrequent small nose bleeds and bruising easily –  were, when taken together and with my other symptoms, signs of AIH.

In the period between February and June 2011 the only physical examination had been to see if my eyes were yellow. I was not asked if I had other symptoms, other than the ones I’d already reported.

New diagnosis

My appointment to see a Consultant Hepatologist was arranged for early July and I was fairly relaxed about the prospect. I’d been told that I didn’t have AIH and thought the appointment would, therefore, address something less significant.

In a long, very considered appointment, Dr S confirmed that I did indeed have Autoimmune Hepatitis, with damage to my liver bordering on cirrhosis; this was likely to have been caused or made worse by a delay in diagnosis and treatment. The blood results were clear cut. Small spider naevi on my face, neck and chest were also evident. Dr S told me that I would need to have a liver biopsy to confirm.

In one sense, the diagnosis was not a surprise, I had heard of the disease. In others, it was a huge shock … shock that I had AIH, that investigations had taken so long, and that two GPs had apparently not recognised it.

From this point onwards, the hospital’s postcode topped the list of favourite destinations in my satnav and I added its “Loyalty Card” to my wallet.

In the eighteen months following my diagnosis, I had weekly, then fortnightly, monthly, bi-monthly, quarterly and half-yearly blood tests, with almost equally frequent appointments with Dr S, and a number of diagnostic procedures. From 2011 to date I have had two liver biopsies, two gastroscopies, an endoscopic ultrasound, an MRI scan, two bone density scans, and six-monthly liver ultrasound scans.

My future management will include six-monthly liver ultrasounds to detect any early signs of cancer and three-yearly gastroscopies. Life-long medication comprises steroids to control the liver inflammation, immuno-suppressants, and a drug to counter the steroids’ effect on bone density.

‘I was “lucky” to have been referred’

I have been on a “roller coaster” of apparently not having the disease and then finding that I do, spending hours, days in hospitals and costing the Health Service thousands of pounds. Autoimmune Hepatitis has come at great cost not only to me but also to the NHS.

My condition is now well managed and stable, blood results excellent. My health is extremely good, I feel well most of the time, tired or “off form” sometimes, possibly due to drug side-effects. That I have cirrhosis may present its own problems in future – portal hypertension, which may in turn lead to varices in the oesophagus and stomach.

I recently had emergency major surgery for an event which the steroids may or may not have contributed to but which masked symptoms initially and delayed wound healing subsequently. The steroids and immuno-suppressants and the fact that I have a cirrhotic liver all indicate against further, restorative surgery.

I was “lucky” to have been referred finally to a Consultant Hepatologist but, given Dr P’s assertion that I did not have AIH, his decision whether or not to refer could have gone either way. Had he not done so and – potentially without medication while waiting a further three months for repeat blood results – I would have suffered further liver damage and my long-term health would have even been further compromised.

The incidence of AIH is apparently 10,000 people in the UK – my husband would say, the equivalent of just one person in the whole of the 90,000 capacity Wembley Stadium having the condition! – and it is one of the 10% of liver conditions that is not preventable. I know that AIH is rare but I question the length of time and the vacillating diagnoses before it was confirmed. Is my experience typical or the result of unfortunate “bad calls”?

A former charity fundraiser colleague of mine now works for British Liver Trust. I want to play a part in helping the Trust to raise awareness of liver disease among professionals and public so that people like me will receive correct diagnosis and treatment as quickly as possible, appropriate referral if indicated, and have potentially more serious complications averted.