It Would Be More* Better If…
Myself, and Many Others Like Me, Received More Than Adequate Treatment For B12 Deficiency and Pernicious Anaemia.
*please excuse the words that escape my mouth and the order in which they do so, it is a reflection of my tired, illogical brain.
When I first returned to education, 10 years after leaving secondary school and quitting A levels, it was exciting to be committed to and progressing towards something as well as my role as a mum. At the time, I had some inclination that I didn’t feel quite right. In retrospect, my health had been deteriorating for some time and I’d been brushing off symptoms or blaming stress and anxiety. I had visited the General Practitioner (GP) several times, on one occasion I had been prescribed anti-depressants and on another beta-blockers. The latter worked to an extent, providing a few hours of freedom from palpitations and excessive sweating. Though I knew it wasn’t getting to the root of the issue and it was worrying when other symptoms intensified. The GP prescribing beta-blockers also instructed a full blood test to be carried out and this was when my B12 levels were found to be extremely low. During the follow-up appointment for the results, I was asked if I was vegetarian, to which I replied ‘no’. Then I was told I would need 4 B12 injections in 2 weeks and then 3 monthly for the rest of my life.
I left that appointment feeling relieved to know what I’d been experiencing was something fixable (or so I thought back then) and that it wasn’t all in my head. There was no further investigation into symptoms or why I had become so deficient. By the time I’d been prescribed the loading dose injections, I was very weak, yellow and confused. It wasn’t until the 4th that I began to feel better. However, relief was short-lived as no more than 3 weeks later I had deteriorated again but was forced to wait 3 months for another injection.
During the time between diagnosis and beginning university, I was anxious about how I would cope as a full-time student with two children and commuting. I was back and forth with the GP pleading for more frequent B12 injections and trying to get the evidence I would need for extra support at university. I was told I could not have more frequent injections and that I could ‘just speak to the university’. When another GP told me I could overdose on vitamin B12, I gave up. This essential nutrient is one you cannot have too much of. The patient-doctor relationship is a strange one, especially when you know they have given incorrect information. I didn’t want to disrespect the years of study this GP had put in but this was basic nutrition.
Naturally, with any medicalised scenario I have found myself in, I did my own research. According to NICE guidelines deficiency with the presentation of neurological symptoms requires guidance from a haematologist and treatment follows injections ‘on alternate days until there is no further improvement, then… every 2 months’. With minimum treatment for deficiency being 6 loading injections in 2 weeks and 3 monthly injections thereafter.
It became apparent I had not received even the minimum treatment, despite experiencing neurological symptoms. The last 2 years have been spent in a perpetual 3 monthly cycle of having an injection, partaking in normal life for around 6 weeks, and then being exhausted, in pain, uncomfortable, unreasonable and fiercely forgetful until my next encounter with B12. This injection costs pennies and it literally keeps me alive, yet its frequency means for the most part I am barely living life.
I’m not alone, research carried out by the Pernicious Anaemia Society shows 64% of respondents are dissatisfied with their current treatment. Reading through posts on a support forum shows many remedy this by safely ordering and injecting B12 themselves.
Three is the magic number
The majority have an understanding of anaemia, however, this is usually concerned with and often limited to iron deficiency anaemia. Not having enough iron does cause anaemia but there is more than one type and cause. For normal, healthy red blood cells to efficiently transport oxygen to the lungs, and everywhere in the body, a combination of three vitamins and minerals are required. Iron, folate (folic acid / B9) and vitamin B12. At the cellular level, vitamin B12 and folate work to construct and shape red blood cells and iron combines with the protein ‘globin’ to form haemoglobin (which is what makes it red). Then, oxygen attaches to haemoglobin for transportation around the body. A deficiency in any one of these three essential nutrients inhibits the healthy production of red blood cells and efficient delivery of oxygen to vital organs. If a person is folate or B12 deficient their red blood cells will be megaloblastic, meaning the cells are large but not developed properly and are fewer in number. An excess of either one can also mask a deficiency in another. Megaloblastic red blood cells will contain less haemoglobin and thus less oxygen. A lack of oxygen in the body causes constant tiredness, an inability to think properly and, if left untreated, eventually death. Hence the term ‘pernicious’, literally means fatal.
Vitamin B12 is not just essential for the development of red blood cells, it is required for the formation of all cells. It also plays a significant role in the synthesis of DNA and fatty acids.
B12 Deficiency Causes and Pernicious Anaemia
A deficiency in vitamin B12 has a number of causes. The most common is pernicious anaemia, an autoimmune disease. To absorb B12 from food ingested, the parietal cells produce a protein, termed the intrinsic factor, this binds to B12 and enables it to enter the bloodstream. Those with pernicious anaemia produce an antibody that attacks the parietal cells, to stop the production of the intrinsic factor. Thus inhibiting the absorption of B12. Vitamin B12 deficiency caused by pernicious anaemia or another absorption issue requires lifelong treatment of B12 injections.
Other conditions affecting absorption of B12 from food include conditions of the stomach and intestines. For example, deficiency has been found in patients with Crohn's disease and those having had a surgical procedure known as a gastrectomy.
Diet is also a factor since the natural source of B12 is dairy and meat products, as it is produced in the gut of animals. It is not often found in plants, though interestingly one source is seaweed. Following a strict diet or one that excludes these food items may result in the need for supplementation. Fortunately, most cereal, grains, flours and dairy alternatives are also fortified with vitamin B12.
Some medications can lead to a deficiency of vitamin B12. Many of which are commonly taken every day. Oral contraceptives containing high amounts of oestrogen, medication for diabetes, antibiotics and indigestion tablets can all deplete B12. Interestingly, inhalation of nitrous oxide can also cause B12 in the body to become inactive.
How Much Trouble Can One Vitamin Cause?
Quite a lot, actually.
Many early symptoms get put down to a chaotic lifestyle or simply as a feature of oneself (for example, ‘I’ve always suffered dizzy spells’ etc). In addition, initial symptoms often appear slowly and over a period of years. Early symptoms consist of extreme fatigue, shortness of breath, brain fog and forgetfulness. Over time symptoms become progressively worse, with deficiency causing behavioural changes and neurological symptoms too. These include irritability, mood swings, depression, dementia and psychosis. Whilst neurological symptoms manifest as nerve pain similar to fibromyalgia, pins and needles, numbness, balance problems and feeling dizzy or faint. Other reported symptoms are tinnitus, sleep disturbances, nominal aphasia, dry skin, mouth ulcers, hot flushes and jaundice.
The central nervous system requires vitamin B12 to function properly. A consistent lack of this essential nutrient leads to demyelination of the nerves, or damage to the myelin sheath that protects the nerves. Otherwise known as, subacute combined degeneration of the spinal cord. Without early treatment, the damage will be continuous and may be irreversible. Additionally, raised levels of homocysteine are found in people deficient in B12 and high levels of this amino acid have been linked to stroke and heart disease. Whilst vitamin B12 treatment reduces homocysteine in the body, further research is needed to determine whether this also lowers the increased risk of stroke associated with high levels.
Fortunately, if diagnosed and treated early complications can be halted; though some damage cannot be reversed.
So, What Is The Issue?
There are numerous problems, the founder of the Pernicious Anaemia Society, Martyn Hooper, classifies them into three sections in his book ‘What You Need To Know About Pernicious Anaemia & Vitamin B12 Deficiency’. Firstly there are issues diagnosing vitamin B12 deficiency, secondly in diagnosing pernicious anaemia and thirdly with the treatment.
Diagnosing Vitamin B12 Deficiency
Symptoms develop slowly, they vary and are associated with other conditions. Meaning, often they won’t be noticed and can be misdiagnosed by the GP, who may not be looking for a B12 deficiency. Research has found 40% of respondents have waited between 1 and 5 years for proper diagnosis. General Practitioners are likely to order a full blood count, which will show the count of enlarged red blood cells. In such a case, another test known as the serum B12 test will be required.
Enlarged red blood cells are not present in a full blood count in every case of pernicious anaemia. Meaning it could be assumed that a person does not have a B12 deficiency when they do unless the serum B12 test has also been carried out (as a more reliable indicator of deficiency).
The serum B12 test has limitations. One paper reported inaccurately high results to the tune of 22 to 35% of patients studied. Also, the likeliness of this test being conducted varies throughout the country, as shown by the NHS Atlas of Variation in Diagnostic Services.
Each laboratory can set its own cut off level to define vitamin B12 deficiency. In other words, the threshold for diagnosis varies throughout the country. Often patients will present with symptoms but will not have reached the cut off level. As such, many are left without any treatment and are simply advised to return months later for another test.
Diagnosing Pernicious Anaemia
One method used to diagnose pernicious anaemia currently tests for antibodies that attack the parietal cells producing the intrinsic factor. Another assumes the parietal cells are functioning, or not under attack, and tests for intrinsic factor antibodies.
The test for parietal cell antibodies is controversial. According to the British Committee for Standards in Haematology, 80% of pernicious anaemia patients will test positive for parietal cell antibodies. However, so will 10% of patients without and therefore it is not recommended as a test for pernicious anaemia.
Equally, the test for intrinsic factor antibodies has also shown to be unreliable as in most cases it produces a negative result. Resulting in many being told they do not have pernicious anaemia when they do.
Some GP’s will solely rely on the clinical results of the above tests, rather than using a combination of knowledge and experience to reach diagnosis from symptoms too.
Treatment
On rare occasions, patients are not prescribed any treatment and are simply told to change their diet and check back in a few months.
Follow up appointments after loading injections that show high levels of B12 sometimes result in treatment being stopped. This is due to GP’s viewing the haematological, clinical deficiency as corrected. High levels would be expected in a person having received initial treatment and, as explained previously, the serum B12 test is unreliable.
The most common issue experienced is the frequency of injections. The majority have continuous symptoms that worsen in the period before their next injection. Most pernicious anaemia sufferers and B12 deficient patients require more frequent injections than is currently prescribed to be able to function normally within their lives. A healthy person feeling low on B12 has the option to simply eat more food containing this vitamin. In contrast, if you cannot absorb this vitamin from food you are made to feel like a junkie desperate for your next fix.
