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Invisible Illness: recognising the symptoms of Pernicious Anaemia

Invisible Illness: recognising the symptoms of Pernicious Anaemia

Pernicious Anaemia (PA) is an invisible illness caused by deficiency in vitamin B12 owing to problems absorbing it from food.

Everyone is different and sufferers of pernicious anaemia will experience the symptoms of the condition to varying degrees. Some patients will have all of the symptoms listed below while others will recognise only a few. This list has been compiled over a number of years and shows what a wide range of symptoms there can be. There are two problems with this wide range. First, many of the symptoms listed below are associated with other medical conditions, which often leads to confusion with other invisible illness and misdiagnosis. Secondly, because there are so many symptoms associated with pernicious anaemia, it makes it difficult for doctors to identify the symptoms specific to the disease – thus making an early diagnosis even less certain.

Common general symptoms of Pernicious Anaemia

  • Shortness of breath – ‘the sighs’
  • Extreme fatigue
  • Brain fog
  • Poor concentration
  • Short-term memory loss
  • Confusion (‘handbag in the fridge syndrome’)
  • Nominal aphasia (forgetting the names of objects)
  • Unaccountable and sudden bouts of diarrhoea, often following a spell of constipation
  • Clumsiness/lack of coordination
  • Brittle, flaky nails; dry skin anywhere on body
  • Mood swings, ‘tear jags’, heightened emotions
  • Sleep disturbance
  • Even though patient is exhausted, is unable to sleep
  • Waking up still tired, even after many hours’ sleep

Neurological symptoms of Pernicious Anaemia

  • Balance problems
  • Dizzy/faint
  • ‘Shoulder bumps’ – frequently bumping into or falling against walls
  • General unsteadiness, especially when showering and dressing
  • Inability to stand up with eyes closed or in the dark
  • Vertigo – inability to cope with heights, linked to the need for a visual reference as compensation for damage to the brain’s balance mechanism
  • Numbness/tingling – especially in hands, arms, legs, feet
  • Burning sensation in legs and feet – Grierson-Gopalan syndrome
  • Tinnitus – ringing/screeching/howling in the ear or ear
  • Neuropathic pain/fibromyalgia – often on only one side of the body
  • Irritability/frustration/impatience; desire for isolation, quiet and peace; aversion to bright lights and crowded spaces

Skin problems associated with Pernicious Anaemia

  • Hair loss – can range from moderate to sever; premature greying of hair
  • Psoriasis/eczema/acne
  • Rosacea – reddening of the skin around the nose and cheeks
  • Vitiligo – white patches that develop on the skin

Other medical problems associated with Pernicious Anaemia

  • Poor digestion
  • Arrhythmia – irregular, fast or slow heartbeat

Autoimmune conditions associated with Pernicious Anaemia

  • Rheumatoid arthritis
  • Hypo- or hyper-thyroidism – almost exclusively among females
  • Coeliac disease – sensitivity to wheat and/or wheat products
  • Myasthenia gravis – weak muscles leading to problems swallowing, chewing and opening eye(s)
  • Psoriatic arthritis

Vitamin B12 deficiency can be detected with a blood test, and if this deficiency is then determined not to be caused by diet it may be a clue that Pernicious Anaemia is the underlying invisible illness.

To learn more about Pernicious Anaemia diagnosis and treatment read What you need to know about Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper, founder of The Pernicious Anaemia Society.

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Recognising red flags when suffering from bowel problems

There are some gut symptoms associated with bowel problems you should never ignore and we thought it best to flag them up here – if you are think these symptoms may apply to you talk to your doctor. Chances are it’s nothing to worry about, but better safe than sorry.

New symptoms

A lot of people endure symptoms such as pain, alternating bowel habits and food intolerance. These may have gone on for a long time, fluctuating in intensity and are sometimes helped by one or two dietary changes, and sometimes not. But recent changes are likely to be more serious than something that has persisted for years. If you had similar problems in your 20s to those in your 50s  and in between), it is unfortunate that you may have had to wait so long to get any answers, but it is not likely to be a life-threatening condition. If the symptoms have just started, it is far more worrying.

Don’t be embarrassed. Help your GP assess what needs to be done. Be sure to describe how long you have had the symptoms and explain exactly what you mean. In particular, be sure to tell your GP about the following symptoms as they may indicate a serious condition:

  • abdominal pain and fever
  • anaemia
  • blood in your stools
  • change in bowel habits
  • jaundice and definite lumps you can feel
  • unexplained weight loss.

Abdominal pain and fever

Fever and sharp, stabbing abdominal pain can have several causes and you may need to go to A&E or even call an ambulance if these are severe and sudden in onset.

Anaemia

Anaemia, which will make you look pale and feel tired, may be due to hidden (‘occult’) blood loss, and your GP may organise for you to have an endoscopy and/or colonoscopy, together with blood tests for coeliac disease, iron, B12 and folate deficiency.

Blood in your stools

Blood in your stools must be investigated. If it occurs only on wiping the anus with toilet tissue, it may just be haemorrhoids (piles) or an anal fissure (tear), but this should be checked by an examination, and then perhaps by a limited flexible sigmoidoscopy. If there is blood mixed in with the stools, you should be referred to a gastroenterologist or colorectal surgeon and have further tests, such as colonoscopy (or possibly a CT scan), to be certain bowel cancer and ulcerative colitis have been excluded. These are major diseases which are much more successfully treated if caught early and are not difficult to diagnose with the proper tests, so get your GP to refer you to a gastroenterologist if you suspect one of these. Although bowel cancer increases in likelihood as you get older, it is common enough that people aged 40 to 50 or younger can get it. If you know that you have a family history of bowel cancer you are also more at risk. The good news is that, when you have had a colonoscopy, you can be sure for quite a long time (several years) that this has been excluded as the cause of your symptoms. The faecal calprotectin test is now also useful in predicting if you do need a colonoscopy. If you are older, be sure to get the routine screening tests that are now offered.

Change in bowel habits

If you have a recent change in your bowel habit, then tell your GP and be prepared to get more tests. Clearly, if everyone in your family has just got the same symptoms after eating the same food, or you have just come back from an area where gastroenteritis is common, and the symptoms are not too bad, you can wait a week or two to see whether things go back to normal. But if they do not, and particularly if there is blood in the stools, then you MUST get tests.

Jaundice and definite lumps you can feel

Jaundice symptoms (yellow eyes and skin) and definite lumps, particularly if they are tender, must not be ignored. The lumps may turn out to be only hard faeces but you want to be sure that a definite diagnosis is made in case it might be an inflamed gall bladder, an ovarian or another cyst, or possibly a stomach or bowel tumour. Hernias in the groin or in other places in the abdomen may also feel like painful lumps and can also cause problems until they are treated.

Unexplained weight loss

Unexplained weight loss is important and will lead to other blood tests and probably hospital referral. Sometimes there is a gut disease (coeliac disease or Crohn’s disease, for instance) or cancer, but in other cases can be due to an endocrine disorder, such as an over-active thyroid, or to a wide range of other disorders, including neurological or mental health problems (you cannot buy, cook or chew your food), or cannot easily eat (dental problems, for instance or Alzheimer’s). These should be fairly easy for your GP to diagnose.

It can be very hard to start figuring out what’s up with your gut, so listen to your body and be aware of any possible symptoms that you should tell a doctor or other health professional who may be able to help. For less serious conditions, just keeping track of how you feel can help you to improve your symptoms on your own.

For more advice on how to track your symptoms and get to the bottom of your bowel issues read our next blog: Working out what’s wrong with your bowel, and order your copy of What’s Up With Your Gut? by Jo Waters and Professor Julian Walters.