27 July 2019
Ten years later, I still
have Sarcoidosis – but
it will never have me
Ten years ago today [27 July 2019], I received the results from my tests and biopsies two weeks earlier. The results confirmed Sarcoidosis, and allowed me to begin looking at the options for treatment next week. But the good news that day was that the biopsies showed no tumours, no cancers and that there was no TB.
The symptoms had been there for at least a year or two, but I had only realised what the medical teams might have been looking for as I was sent for a battery of tests, one after another, in Saint James’s Hospital, Tallaght Hospital and the Beacon Clinic.
I had been living with sarcoidosis for a year or two, at least, but was also learning in those more recent months that I was living with a severe deficiency of Vitamin B12.
When the symptoms first started to appear, I simply thought that age was beginning to creep up on me. I never expected to play rugby or cricket again. But – as someone who never learned to drive – I began to miss out on regular walks that had kept my fit and healthy.
As I was going through these tests, I was amused to find that Sir Arthur Conan Doyle – the creator of Sherlock Holmes and Dr Watson – had his own brush with sarcoidosis. Well Doyle did make Sherlock Holmes a student at Sidney Sussex, my favourite Cambridge college.
In 1926, Doyle introduced a patient with cutaneous sarcoidosis as a key figure in his plot for The Adventure of The Blanched Soldier. In Doyle’s novel, the patient is misdiagnosed with leprosy, but in many ways this highlights the varied presentations for sarcoidosis and the potential for a delay in the diagnosis.
Around the time I was being diagnosed, Dr Seamas Donnelly of the National Pulmonary Fibrosis Referral Centre Saint Vincent’s University Hospital, Dublin, wrote in The Irish Medical Times about the diagnosis and treatment of sarcoidosis, saying Ireland has one of the highest incidences of sarcoidosis in the world. And yet the specific cause of sarcoidosis remains unknown, although at Saint Vincent’s they have identified a specific pattern of genes associated with aggressive disease in sarcoidosis.
The symptoms include intense fatigue, and the lungs are affected in 90 per cent of cases, with discrete but well-formed non-caseating granuloma in up to 85 per cent of cases.
In my case, the symptoms include growths (granuloma) on my lungs, swelling in my neck, an irritating dry cough, sleeping difficulties, constant joint pains – especially in my knees and in my feet – that slow me down unexpectedly, small growths or marks that flare up on my legs or have left scar tissue on my nose, and bouts of fatigue that leave me tired and without full energy.
Sarcoidosis is a multi-system disorder, initially affecting young people in their 20s and 30s, which adversely affects quality of life. Dr Donnelly pointed out that while sarcoidosis does not feature prominently in the media in Ireland, more Irish people suffer from this disorder than from cystic fibrosis or cervical cancer.
Up to 30 per cent of patients show progressive disease, and mortality is the range of 1-5 per cent. In some cases, sarcoidosis is a chronic progressive disease, affecting the central nervous system, bone and skin.
My Vitamin B12 deficiency was a separate diagnosis, but came at the same time, and probably confused the symptoms I was presenting with.
Initially, I was on a course of Vitamin B12 injections every second day. Eventually this was reduced to one injection a week, and then once a month. Now the injections are needed every two or three months.
Vitamin B12 occurs naturally only in animal products, including eggs, meat and milk, and in a particular strain of nutritional yeast. And so, my deficiency of B12 can be traced directly to my vegetarian diet of almost 50 years, and my natural dislike for the taste of cow’s milk.
B12 deficiency is common among vegetarians and vegans who do not take B12 supplements. In vegans, the risk is very high because none of their natural food sources contain B12. One American study found blood levels below normal in 92% of vegans, 64% of lacto-vegetarians, and 47% of lacto-ovo-vegetarians who did not supplement their diet with B12 – although recent research suggests that these figures may even be higher than first suggested.
This deficiency is also very significant in parts of Africa, India, and South and Central America, where there are low intakes of animal products, particularly among the poor.
Vitamin B12 is found in foods that come from animals, including fish, meat, poultry, eggs, milk, and milk products and fortified breakfast cereals. Other sources include nutritional yeast, fortified soy milks, and fortified energy bars.
This condition is brought about by an inadequate dietary intake or impaired absorption of Vitamin B12. In serious cases, this deficiency has the potential of causing severe and irreversible damage to the nervous system, including sub-acute combined degeneration of the spinal cord.
Early and even fairly pronounced deficiency of B12 does not always cause distinct or specific symptoms. Common early symptoms are tiredness or a decreased mental work capacity, decreased concentration and decreased memory, irritability and depression.
Sleep disturbances may occur, because B12 may be involved in the regulation of the sleep wake cycle by the pineal gland, through melatonin. The neurological signs of B12 deficiency, which can occur without anaemia, include sensory disturbances due to damage to peripheral nerves caused by demyelination and irreversible nerve cell death. The symptoms include numbness and/or tingling of the extremities, impaired sense of smell, loss of appetite, disturbed co-ordination and, if not treated in time, an ataxic gait, especially in the dark when there is less visual reference, a syndrome known as sub-acute combined degeneration of the spinal cord.
B-12 deficiency can also cause symptoms of mania, psychosis, fatigue, memory impairment, irritability, depression and personality changes. Other symptoms include shortness of breath, which can occur when walking just a few yards and migraine headaches.
Vitamin B12 can be given as intramuscular injections. After half a dozen injections over the first couple of weeks, the body stores of B12 in the liver are refilled but have to be maintained for the rest of a patient’s life with monthly to quarterly injections.
Over the space of two years, I had batteries of tests in hospitals that have left me feeling tired, if not exhausted – lung tests in the pulmonary laboratory, three or four X-Rays on my lungs and on my knees, blood tests, consultations with specialists, consultants, nurses and dieticians, and a few overnight stays so that tissue samples could be taken from my lungs. At times, it was difficult to tell whether the waiting or the tests were more demanding.
But my GP and those he referred to me were quick in diagnosing my deficiency of Vitamin B12 and in putting me on a course of supplementary injections.
This deficiency and the regular injections I need were enough to cope with. But having to cope with Sarcoidosis too just made it all more difficult and more demanding. So I was glad to learn this day 10 years ago what was wrong. With all the prayers and support and love I received, and with the professionalism of my GP and the consultants, I began coming through to the other side.
Over the decade that followed those test results, I have continued to take an inhaler twice a day, take tablets twice a day, receive a B12 injection about once a quarter, and see my GP regularly.
I never received the remission from sarcoidosis that others have benefitted from. My dry cough persists, even if it is less noticeable and disruptive. But it seems there has been no change in the growths or granuloma on my lungs, no change in the swelling of my glands, and my lungs are functioning well.
Despite occasional flare-ups, I have learned to leave with the symptoms and have found other activities that may not be therapeutic but certainly help me to cope: long walks on favourite beaches, by a riverbank, a lakeshore or in the countryside, and paying attention to my prayer life, and to those I love and those who love me.
Walks on the beach, regular visits to Lichfield, Cambridge and Crete, and sunny afternoons watching cricket may not be part of what the doctors prescribe, but they are certainly good for the body and the soul.
I am grateful for the love and prayers and support I have received over the past decade. Life is not to be taken for granted. I may have Sarcoidosis – but it will never have me.