We tend to think of anaemia as someone who’s pale and tired, maybe a little dizzy. But with PA, the story is much stranger. Imagine feeling like your feet are on fire, hearing phantom ringing, forgetting your best friend’s name, or waking up feeling hungover despite being sober for a decade. Welcome to the peculiar world of Pernicious Anaemia.
In this blog post, we’re unpacking the strangest and most surprising symptoms of PA – the ones that don’t show up in textbook definitions but are very real for those living with the condition. This list reflects not only findings from medical literature and case reports, but also the real-life experiences of those who navigate the complexities of this condition every day.
The “Normal” Symptoms (That Still Feel Very Not-Normal)
Sure, fatigue is a classic symptom. But PA rarely stops at just being tired. Here’s a taste of what many consider their “everyday weird”:
- Burning feet or hands – A sensation like you’ve walked across hot coals… in socks!
- Pins and needles – Numbness or tingling, often mistaken for carpal tunnel or MS.
- Brain fog – Brain fog is defined as a feeling of confusion, lack of focus, forgetfulness or not paying attention, difficulty in concentrating and memory problems.
- Struggling with words – This is called Nominal Aphasia – the loss of words mid-sentence or difficulty with word retrieval while remaining otherwise fluent.
- Digestive chaos – Heartburn, bloating, constipation, diarrhea… pick your poison.
- Irritability and depression – Not just “off days,” but mood swings that can feel disorienting or uncharacteristic.
- Glossitis – A red, smooth, and often sore tongue that can make eating or speaking uncomfortable.
- Hair changes – Thinning, shedding, or greying prematurely.
- Cracked lips and brittle nails – Minor in appearance, major in how annoying they can be.
- Lightheadedness – The kind that makes you grab furniture just to stay upright.
- Shortness of breath – It’s not just from exertion; you might feel winded even during the simplest tasks or when you’re resting.
Strange but Documented: The “Wait, That’s a Thing?” Symptoms
Now we enter the realm of the lesser-known but well-documented. These are the symptoms that make people question their sanity-until they find others with the exact same experience:
- Tinnitus – A persistent ringing or buzzing in your ears.
- Low-grade fevers – Just high enough to make you wonder if you’re getting sick.
- Palpitations – That feeling your heart has forgotten how to beat in rhythm.
- Loss of taste or smell – Especially frustrating if you enjoy good food. There is also documented evidence of olfactory hallucinations for B12 deficient patients, i.e., smelling smells (usually unpleasant) that aren’t actually there (medically called phantosmia).
- Pale or yellow-tinged skin – It’s not a tan, not a glow-just strangely off.
- Unexplained weight changes – Gaining or losing without changing a thing.
- Cold intolerance – You’re freezing, but no one else is. Even in hot summer months!
- Restless Legs Syndrome – The overwhelming urge to move your legs, especially at night.
- Hypopigmentation – White patches on skin, like vitiligo.
- Spinal cord damage – Affecting walking, balance, and coordination.
Rare, Wild, and Totally Real: The Deep End of PA
And now, the bizarre. These are the symptoms that sound like something out of a medical drama-but they’ve all been linked to severe or untreated PA:
- Visual disturbances – From blurred vision to optic nerve damage.
- Reproductive issues – Including delayed puberty and infertility.
- Psychosis or hallucinations – Seeing or hearing things that aren’t there. Also, sometimes tactile hallucinations, feeling things that aren’t there.
- Cognitive decline – Resembling Alzheimer’s in advanced cases.
- Loss of bladder control – Yes, really.
- Changes in reflexes – Including exaggerated or absent responses.
- Bone problems – Including fractures from underlying osteoporosis.
- Mouth ulcers and bleeding gums – Painful, persistent, and puzzling.
- Cardiovascular quirks – Heart murmurs, erratic blood pressure.
- Severe Anxiety/Panic Attacks – Overwhelming feelings of dread, often without warning.
- “The Sighs” – B12 deficiency patients sometimes report having to take a deep intake of breath periodically, often unaware they are doing it. They feel that they need to gasp for breath, which may lead to others asking why they are “sighing.”
So… What Do You Do With All This?
If any of this sounds familiar and you haven’t been thoroughly tested for B12 deficiency, then do not wait. While a standard serum B12 test is often the first step, it’s not always an accurate reflection of what is happening in your cells. Ask your doctor about functional tests like methylmalonic acid (MMA), homocysteine, or an Intrinsic Factor antibody test. Catching Pernicious Anaemia early can mean the difference between manageable care and years of unexplained, worsening symptoms.
If you already have a diagnosis, know this: you’re not imagining things. You’re not being dramatic. You’re not alone. Thousands of others have walked this strange road, often for years before getting answers.
Most importantly, trust your body. Even if your doctor says your levels are “fine,” symptoms matter. Your experience matters. Advocacy matters. Medicine is evolving, but it hasn’t caught up to everything PA can do just yet.
Got a bizarre PA symptom no one talks about? Share it in the comments or on your favorite forum. Someone else out there might just breathe a sigh of relief knowing they’re not the only one.
Well, speaking of “panic attacks,” this almost caused me to have one, because these symptoms–almost ALL of them–have been my life for years and, thanks to incompetent doctors, 31 years with no diagnoses, just this strange disease slowly tearing my life apart and more and more of my life became impossible to live.
But this raises another issue, I’m 40 years, plus or minus, into this illness, I’m a woman of science who got NO answers from doctors who came up with telling statements like, “Well, you’re getting B-12, what do you want from us?” Answer: INFORMATION! It’s telling that every time I access PAS to read one of your new bulletins, more of my life gets redefined. Answer: DOCTORS WHO CARE ENOUGH TO ACCESS DATABASES AVAILABLE TO DOCTORS ON DISEASES LIKE P.A.
I’m printing this one out, for myself and for my daughter, with it important to observe all the many years that even my loved ones looked upon me skeptically because, well, “The doctors say you’re fine.” I need this list of symptoms–the spinal symptoms are particularly interesting because I have days that occur when whole sections of my spine are numb–but it’s the sort of thing I need to have on hand because I’ve had WAY TOO MANY DAYS of all questions and no answers!
Thank you, PAS for this! Now, how do we get this information out to the world. (I write from Los Alamos, New Mexico (“Science City”) where doctors totally failed me. I do know most of them are going to get a printout of this mailing.
P.S. I agree with the “ask your doctor” portion. Again, thank you! But something I was taught by a 94-year-old, still practicing doctor from back when at least medicine knew what pernicious anemia was. If you ask for tests, also ask for a stomach-gastrin test. This can be diagnostic too. (Mine came back at a level 4 on a scale of 50, with 35 to 40 more-or-less normal ranges.) But the real value is to have knowledge about where the damage to your stomach is. I have almost no gastrin, so…
Since my stomach is very damaged, I take digestive enzymes with meals and also HCL with pepsin. As the old doctor explained: I used to drink huge amounts of coffee, including before and after meals. That coffee (or the acid in it) was helping me digest foods that my stomach wasn’t doing a very good job of. But, sadly, with the auto-immune stuff and intolerances exploding, I had to give up the coffee that had long been a valuable “medicine” for me–in fact, I had, on several occasions, tried to discuss my dependence on it with doctors, but they had no clue. Too bad I didn’t know my 94-year-old doctor back then!
Hi,
Here’s a few you haven’t mentioned
I think this one’s quite common….feeling like a spider or insect was crawling over me.
I had what looked like little bite marks around the edge of my tongue.
I had many fungal infections…dandruff, thrush and others.
I didn’t experience this next one but I have read that as well as causing hypopigmentation (loss of pigment) in some people, B12 deficiency can also cause hyperpigmentation (excess pigment) in some people.
I know when my B12 is low, I get an itch on my back just under my right shoulder blade. The sane place every time. The itch drives me mad. A B12 injection stops it
My weirdest symptoms were seeing (imaginary) mice scuttling away on the periphary of my vision, and the world often smelling of burnt toast. Both have disappeared with frequent B12 injections.
Gosh, there’s so many symptoms isn’t there? It really encompasses all systems.
B12 is so much more important than I ever realised before becoming so desperately sick.
Some of my oddest symptoms:
– visual hallucinations/disturbances: I could see people or cars in the corner of my eyes but when I turned to look at them, they were never there.
– a worsening of my Reynaud’s symptoms
– memory impairments: I could not, for the life of me, remember my card PINs. Even if I looked at them 5 min before. I was frequently losing items and forgetting conversations.
– auditory processing: I was struggling to compute what was being spoken. I’d listen carefully and it would make no sense, or I couldn’t explain it to my students. I’d read the same concept and have no issues understanding.
– insane anxiety, panic and paranoia.
– no dreams: I didn’t start dreaming again until a few months into B12 injections.
– night time stumbles and stiffness: if I got up during the night, I could not get oriented to where the walls or floor were and would stumble a lot. I also could only teeter on the edges of my feet or my toes, as my legs and feet were stiff and painful or dead (pins and needles). I thought I just slept funny. I forgot this used to happen, it hasn’t happened in about a year now.
– eye changes: I found driving at night suddenly very frightening and difficult, and struggled with distance eyesight. These symptoms reversed after a few months of B12 injections, to the astonishment of my optometrist who had to change my prescription back to one from 2021
A lot of my other symptoms are already mentioned in the article but I thought I would add that a lot of them really crept up on me. Starting off very small and minor and growing to a place where it was debilitating. By which time a lot of damage was done.
Hi! I’ve been suffering with fatigue for years. Every time they test my B12 levels they say they are fine. Last year I had what felt like a spider crawling across my face…. One year later it just feels like pins and needles on my face, it never goes away. I have had constant tinnitus for as long as I can remember. In addition, chronic constipation, and depression. My Neurologist said everything was fine other than I have carpal tunnel. I am at my wits end to feel better.
I suffered from doctors not knowing anything about b12! Mine was elevated and I found research about paradoxical b12 deficiency! The doctors wouldn’t believe me. I had genetic testing that show three polymorphism that contribute to my body not metabolizing b12. Still the traditional medical system disparaged me! I had my mma taken and 2-methlymelonic acid was high – still doubted by the ucla medical system. I even had macrocytosis overlooked! I researched and read! Then I went for b12 injections on my own – finally one rheumatologist at usc believed me and ordered b12 for me, but he didn’t know anything about treating it otherwise. Now, I have seen an acupuncturist and 2 functional medicine doctors who know about b12 deficiency- finally!!! 99.9% of what I learned was on my own (the medical system misdiagnosed me as having psoriatic arthritis without psoriasis,mis-medicated me, and belittled and attacked me in the course of 10 years as I tried to figure out what was wrong! Sadly, I know I am not alone in how I was treated!
Hi Wendy
The frustration of feeling so poorly and yet not finding an answer is so disheartening,
I have found being a member of this group a life saver,
I still find it hard to believe in 2025 there are health professionals who know next to nothing about B12 deficiency
Finding the right doctor and reaching out to this group is the answer.
Hi I tick so many of those symptoms I’m 70yrs old and now in constant pain physically..My gp said my b12 was normal a good few years ago and even now when they test it once a year only.The passed two years I’ve gone privately for a range of blood tests and was told I was in the grey area for b12 and this is where many people get missed been diagnosed with a b12 deficiency.Ive also got large blood cells.I took my results to show my gp who wasn’t helpful.I asked for my previous b12 results from last three years and they where also in grey area.I am at my wits end as my symptoms have increased pains in my thighs,shins,joints,burning,pins and needles,tintinus plus many.I always enjoyed my long walks but can’t do it anymore without feeling pain.So many people in the same place as me we need to be heard.
Makes me wonder if some chronic health condition may be at least partially related? Recently, around 3 years ago developed a chronic bladder condition called cysticis cystica and glandularis, which seems like an autoimmune condition. With B12 being low for years, I think it contributes to many health aspects. In the past five years, I have been going from illness to illness. Also, when I had COVID tested positive for three weeks! eventually developed long covid, which may have been B12-related. The symptoms are similar. I have been diagnosed in the past five years with CKD stage three, fatty liver, and, of course, atrophic pangastricis.
Folic acid deficiency -on top of B12 deficiency…. twice in the past 4 years have been really ill with this. Blood tests stopped 2 years ago post covid -(no need to test for b12 now once injections have started) – so… after 18 months of stress caused by husbands heart attack, sick daughter and managing my father in law’s affairs from 300 miles away… I realised I wasn’t just exhausted but something was really wrong – I couldn’t walk to the local shop..1/3 mile away…,my cholesterol was going up and up and I had heart palpitations and breathlessness.
Was prescribed 1 month of folic acid despite being below 2.7 – I argued with the GP and asked for another 3 months prescriptions – still feel ill – weak and legs are blue with small thread veins.
Told that I can come back if I feel ill again in the future – no word about regular blood tests… I am concerned as I am getting older – that I am responsible for checking my blood tests regularly – this year has been so stressful I forgot about me.
I plan to attend the online meetups I appreciate that they are available for us to attend. This is a very simple one and a few of these symptoms mentioned in this blog very much ‘hit home’ such as panic, anxiety healrt flutters or even palpitations (often at night) I was going mad trying to get my practioner to refer me to a cardiologist and the thought of a stress test frightens me quite literally. I relate much to these symptomes, the premature greying of hair, I had my first greys in the teen years! The mentioned brittle nails and strongly chapped lips, I have this too, yet never connected these symptoms to PA.
Has anyone experienced bruxism and or TMJ (temporomandibular joint syndrome) I have this during the night. However it would help to hear yays or nays on bruxism as I am completely in the dark as to whether this is a PA symptom or not. OR something else altogether (dentist simply says reduce your stress) Thanks Doc! Sarky I know – although, again as many of us have come to realise, many in the medical community do lack adequate understanding of PA. Thanks all.