I was diagnosed with Pernicious Anaemia (PA) a couple of years ago. It took long enough for anyone to even test my B12 levels after increasing symptoms, especially where exhaustion was concerned. The sad and frustrating thing is that despite diagnosis and treatment, I still struggle with PA. The way it is managed in the UK by the NHS is not always helpful for patients, and there are many out there campaigning to change this. Here’s what you need to know about PA.
What Is Pernicious Anaemia?
Pernicious anaemia (PA) is a form of B12 deficiency. Although it’s the most common form in the UK, PA is still considered a rare disease, with the Journal of Blood Medicine estimating that it affects 0.1% of the general population.
B12 is combined with intrinsic factor (IF) in your stomach, a protein that helps the absorption of the vitamin. Some people have a lack of IF and thus an impaired ability to absorb B12, often as a result of pernicious anaemia being an autoimmune condition that attacks the cells in the stomach. However, for some, Pernicious Anaemia doesn’t an identifiable cause. They are found to have acceptable IF levels and yet are still unable to absorb B12. In such cases, it’s thought that genetics / familial history of Pernicious Anaemia may play a role, along with other conditions.
It was called Pernicious because previously was a deadly condition, but thankfully science has been able to provide treatment to save lives of those with PA.
A lack of B12 (and/or folate) results in red blood cells being underdeveloped. Pernicious anaemia is a type of macrocytic anaemia, referring to the way in which fatter blood cells are less able to carry oxygen around the body (also termed Megaloblastic Anaemia).
How’s It Different To B12 Deficiency?
B12 deficiency can be due to various reasons, including a diet that’s lacking in such important vitamins, Inflammatory Bowel Diseases, and certain medications. With adjustments to lifestyle and temporary or oral B12 supplementation, B12 levels can be increased and made stable. However, for those with PA, ingesting B12 doesn’t help as the stomach doesn’t absorb it. Levels will continue to drop after an initial B12 injection because the body is unable to maintain B12. Ongoing B12 injections, generally for life, are required for those with PA. If left untreated, pernicious anaemia can have serious complications.
Symptoms of Pernicious Anaemia
Pernicious Anaemia is a more insidious condition that can produce symptoms gradually over time and get worse without treatment. Symptoms can be quite generalised and overlap with other conditions, too, making it hard to diagnosed unless specifically tested for. Some people may have various symptoms, others just a few, and there will be varying degrees of each as the condition will obviously affect every individual differently. Common symptoms can include :
- Tingling / numbness in hands/feet
- Tiredness, exhaustion, significant fatigue
- ‘Brain fog’, impaired thinking and memory
- Flaking nails, dry skin
- Shortness of breath
- Dizziness, difficulty with co-ordination, vertigo
- Fluctuating weight, gastrointestinal symptoms/poor digestion
- Irritability, problematic sleep, depression, low libido, mood swings
Due to often slow-growing, generalised symptoms, PA is often overlooked and many can be without treatment for years. It’s not included in most general blood work ups and so it’s important that if you find yourself with worrying symptoms that you request a B12 test specifically.
Blood tests can look for anaemia, folate deficiency and the size of red blood cells. Your GP should also keep in mind any symptoms you’re experiencing. The problem next comes with levels, which vary between countries and can often leave many without adequate treatment because they’re considered borderline. Tests are not always accurate and can lead to false positives, too. It’s important to not only keep a record of symptoms, but to request a full work-up, to look at your Intrinsic Factor if there’s a deficiency, and ask for your levels so that you can have these for your own reference.
Diagnosis and treatment, if B12 deficiency is found, next moves on to a course of regular injections over a couple of weeks to assess your levels and your symptoms, and a follow-up blood test weeks later to see whether B12 has been retained by the body.
Treatment for Pernicious Anaemia
Treatment is generally via an injection in the upper arm of Hydroxocobalamin.
Sadly, many in the UK struggle with treatment for PA due to doctor’s surgeries limiting injections to once every 3 months. Other countries, other specialists, can often allow for more regular injections on a patient-by-patient basis. There has been a lot of discontent among patients and rallying trying to reassess treatment within the UK, as well as to educate and research more on the ways in which PA is diagnosed.
There’s also debate as to whether blood tests are viable measures of PA; once treatment has been underway, blood tests can suggest higher levels of B12 than is necessarily accurate because they can report up to 80% of B12 that’s inactive and unusable.
I find that by month 3, I’m flagging quite drastically and things continue to go downhill until the injection. However, I never get adequate relief from symptoms. I don’t notice a huge improvement when I have my injection, just when it’s wearing out. This is quite common among those with PA, but many will also find huge benefit to injections and be okay to have them every three months. It really does vary. For those who don’t notice a big improvement, but do notice a huge problem at month 3, the rare few who have been able to seek help elsewhere from a compassionate doctor and have regular injections have gone on to find incredible benefit. The injections are said to cost around £1 and doctors and nurses will say there’s no evidence that more regular injections are helpful, and flat out refuse to do them even every 6 rather than 8 weeks. It’s another reason I think the treatment for PA needs to be reviewed and for all doctors and nurses to be fully informed and put the patients first.
Campaign For Change
The current petition on Change.org is a great one as it outlines the problems with treatment and requests consideration for injections to be made more readily available to patients. I’d really recommend those with PA, or who want to support the cause and those individuals struggling with the condition, to take a look and sign it. You can find it here.
Do you have any experience with Pernicious Anaemia? If you have symptoms and are concerned, please speak to your GP and request a check of your B12.