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Registered Nurse and Lactation consultant IBCLC
Could it be vitamin B12 deficiency?
"I kept going back to the doctor for years"
I struggled with fatigue and mental instability for years. I had tried everything, including alternative medicine, like homeopathy and chiropractor, spend thousands on supplements and still I was not well. I was already 55 and couldn't concentrate and walking was to tiring, before a doctor finally let me try B12 injections, I finally got better. Why did nobody else suggest this to me before I wondered.
Try this symptom checker to see if you are B12 deficient. Click on this logo of B12d!
"I don't live, I merely survive".
One of the main symptoms of B12 deficiency is fatigue, difficulty with keeping up day to day work, staying fit. Overal unhealthy. Prone to infections (urinary, upper airway). Looking pale, unhealthy. It affects myelin around your nerves, leading to neuropathy. Pains and aches, back, joints, sciatica, also numbness, tingeling, "pins and needles", blurred vision, dizziness. It affects mental wellness, like extreme irritability, anxiety attacks, bipolar and even suicide. Bad concentration, sleep and brainfog. Can cause muscle weakness. Clumsiness, even to the point one cannot walk anymore. The nerve damage can even get permanent. You can have all kinds of stomach and digestive issues but also severe morning sickness and end up with PPD in pregnancy, and can damage the brain and nerves in the foetus, your baby needs folate and B12 to prevent NTD. Because of the costs of B12 testing no regular testing is done during pregnancy. Bloodlevels are usual within a very wide "normal" range, and doctors look for anemia, to "prove" a deficiency, but neurological symptoms usually proceed long before bloodcells are affected, so the doctor doesn't give you treatment in time. The downward spiral continues year in year out, you feel "off".
B12 deficiency, if left untreated, results in death,
Check these patients histories.
How do you get B12 deficiency?
Low B12 you can get from eating little animal food, which is the norm these days, but also from eating predominantly carbodydrates in every meal, which is standard western diet, it simply creates the upper fermenting gut, SIBO, irritable bowl syndrome, your small intestines should be near sterile, but yeast, bacteria and parasites live happily eating your vitamins and minerals. That's why you see people starting a ketogenic diet greatly improve in energy and overal wellbeing. Also stopping grains and dairy sometimes helps. People eliminate until even only meat for a while which can start them a "clean" slate, getting normal gut function. But what also causes low B12 is people who have auto-immune disease, thyroid, stomach, DM1, Coeliac, Crohn's, which leads to malabsorption. Even in children. You can be born with "dirty" genes, not converting or methylating well, 40% of people have the MTHFR gen. ALWAYS AVOID FOLIC ACID FROM FOOD (synthetic) GET METHYLFOLATE OR FOLINIC ACID, the synthetic version folic acid is added to flour and grains in many countries. But also hereditary errors in B12 metabolism. Before it's in your cells, a lot can go wrong. Like with medication, for example the birth control pill, anti-acids, metformin, certain antibiotics and epileptic drugs. Stomach reduction surgery. Everyone knows that laughing gas is a dangerous party drug, because it inactivates your B12 in the cells. But it's used a lot in dentistry and labor. Cancer treatment can cause low B12 levels, it can greatly improve outcomes, B12 is needed to make DNA and RNA.
I am a RN, experienced in the field of a vitamin B12 deficiency.
I can help you to connect the dots and get rid of all your misdiagnoses you had, saying "it was all in your head", or medication you got for depression or anxiety. Or "you just have a difficult time", heavy periods, it's pregnancy, being a mother, working fulltime in a tough job, losing loved ones or later in life it's because of menopause you feel miserable.
B12 is very safe, it can not be overdosed or toxic
It's water soluble. Even in high doses it is safe, what the body cannot use ends up in the urine.
B12 can greatly improve outcomes with the list of symptoms but will tablets be enough?
Tablets may improve some, you can try sublingual in high doses of methylcobalamin and adenosylcobalamin, the natural forms of B12, to see if you feel improvements, if you do, you know it's B12 you are lacking, but having a true problem like not absorbing or metabolising B12 often people need injections for life. Injections need also weeks to months to give improvements, even some years, depending on how deficient you were and how long. Some neurological damage never resolves, key is to start treatment as soon as possible. You're like a dry sponge who needs soaking in pools of B12. If you have low iron and/or folate level, B12 will not help enough. You need normal D, B2, good daily magnesium intake, iodine, molybdenum. Zinc and copper in the right balance 15 mg zinc/1,5 mg copper for example, and sufficient selenium in food or in the form of selenite in a supplement.
What about co-factors
It's not only B12:
Many have too low ferretin (iron), you want your serum level not lower than 30-50 mcg/L and neither have "false high" ferritin because of inflammation, infections or from vigorous excersise. Your Hb (hemoglobin) doesn't go down until really depeleted from ferretine, so Hb can be "normal". Symptoms of low iron: Impaired cognition, fatigue, reduced exercises capacity, restless legs, hairloss. Labs often say below 20 is "normal". And you also need copper for iron to "work".
You need iodine, selenium, molybdenum, active B2, (folate you want 20-45), B6, B1 and al the other minerals and B vitamins. The irony of it all, practically everything you need is in red meat, only C you add, improves heme iron absorption, plant iron like spinach is very hard for the body to get enough from. That's why carnivore diet massively improves so many people, because it's also keto, so it heals the upper fermenting gut.
Getting everything checked at your doctor or a lab in your area is nescessary to know your starting point and to rule out any malignencies. Also a thyroid problem needs to be ruled out, but ranges for TSH are so wide, the doctor usually tells you there's nothing wrong with it.
Disclaimer
I'm not a medical doctor but have a lot of experience personally and as a RN and IBCLC from 1985 working in hospitals, maternity home care and the last eleven years at the Tongue Tie Clinic where I have gained clinical experience with recognising B12 deficiency and "saved" entire families from the downward spiral of B12 deficiency.
Who am I
Maaike van Broekhoven RN, IBCLC.
I have worked for last eleven years as a registered nurse and IBCLC Lactation Consultant at the Tongue Tie Clinic in Groningen, the Netherlands. I have been a nurse since 1985, with most of my career spent in maternity home care. I qualified as a Lactation Consultant in 2001.
Throughout my career, I have remained critical of mainstream healthcare and have consistently searched for better, more natural, and more sustainable approaches. I myself was already experiencing many symptoms of B12 deficiency, tried homeopathy and spend thousands on natural approaches and supplements.
Fourteen years ago, I discovered that my own sons were unable to breastfeed effectively due to tongue ties. This realization led me to research the subject extensively. As a result, I began organizing lectures in the Netherlands and eventually started treating tongue tie in infants with a dentist.
Around six years ago, I learned that I myself had been vitamin B12 deficient for decades. This personal discovery profoundly changed my clinical perspective. Very soon, I noticed a recurring pattern: after tongue-tie release, some parents returned because problems persisted and nothing seemed to help their baby.
During follow-up consultations, mothers frequently shared long and complex histories of unexplained symptoms and diagnostic struggles, which often pointed toward unrecognized or inadequately treated B12 deficiency. In follow-up consultations, many mothers described prolonged histories of unexplained neurological, gastrointestinal, or fatigue-related symptoms, often consistent with undiagnosed or inadequately treated B12 deficiency.
Infants frequently presented with poor suck–swallow coordination, hypotonia or hypertonia, fatigue during feeding, reflux-like symptoms, and suboptimal weight gain and sometimes slow development.
List of symptoms
Neurological:
Absences / seizures
Aphasia (problems with speaking, using the wrong words, not being able to find the right word; “keyboard aphasia”; speaking with a “thick/double tongue,” speech apraxia)
Abnormal reflexes
Ataxia, reduced sense of position (unsteady gait, staggering walk, up to being unable to walk at all)
Concentration and memory problems (no longer able to think clearly, derealization, “cotton wool head,” drowsiness)
Dementia (memory loss)
Dizziness
Fasciculations / myoclonus (like eye muscle twitching, contraction of a small part of a muscle, involuntary movements)
Hearing problems (tinnitus, distorted sound, etc.)
Feeling cold (sometimes also a burning sensation on the skin)
Headache / migraine
Hypertonic bladder (unable to hold urine)
Eye problems (optic neuropathy, blurred vision, visual field loss)
Strange sensation in the feet (feeling like walking on felt, cotton, or cushions; altered surface sensation; burning feeling on the skin)
Restless legs
Muscle pain (worse after exertion than at rest; sometimes cramps, weakness, loss of strength)
Tingling (in the feet and hands, later also in legs, arms, and face; “electric” sensation; “pins and needles”; also numbness in hands and feet, trembling hands, neurological deficits)
Reduced sense of position (unexplained falls or suddenly dropping things)
Heavy and stiff feeling in the legs
Behavioral changes:
Psychological problems (ranging from irritability / “short temper,” mood swings, and unreasonable behavior to severe psychiatric issues, panic attacks, and suicidal behavior)
Other:
Mouth ulcers / inflammation in the mouth
Allergies
Chest tightness / angina-like pain
Spontaneous / unexplained bruising
Anemia
Brittle nails
Digestive issues, diarrhea/constipation (regularly)
Dry skin
Dental problems (inflamed and/or bleeding gums; iron/metallic taste)
Birth defects, neural tube
Yellowing of the skin and whites of the eyes
Weight loss (loss of appetite, loss of taste/smell)
Joint pain
Glossitis (painful tongue, swollen tongue, so-called “beefy tongue,” especially with spicy foods, acidic drinks, and brushing teeth)
Hair loss
Palpitations / heart rhythm disturbances / rapid heart rate
Hyperpigmentation
Impotence
Infections (increased risk of vaginal and urinary tract infections)
Shortness of breath
Loss of libido
Menstrual problems (irregular, sometimes absent)
Miscarriage
Nausea (loss of appetite, vague stomach discomfort, underweight)
Inflammation in the digestive tract (intestinal inflammation, even leading to perforation)
Infertility
Orthostatic hypotension (sudden drop in blood pressure causing dizziness and/or fainting)
Pap smear, false-positive result
Petechiae (red or purple pinpoint skin bleeding)
Pain (including in the back, hands, wrists, hips, and knees)
Sleep problems, insomnia
Drowsiness (also needing a lot of sleep, falling asleep spontaneously)
Fatigue (sometimes very severe, often already upon waking; no energy)
Sinus infections
The most common complaints
96% of patients are (unusually) generally fatigued
87% wake up feeling tired
34% have glossitis
30% have hair loss, mouth ulcers, or blurred vision
Neurological complaints
78% suffer from memory loss
75% have poor concentration
73% experience shortness of breath
66% suffer from clumsiness or ataxia
59% experience dizziness
56% have cardiac arrhythmias
50% have aphasia word finding problems
Symptoms pregnancy breastfeeding babies and children
Mother B12 deficient ->pregnancy takes 1/3 of reserves, more pregnancies less B12 reserves -> baby born deficient->breastmilk also deficient -> breastfeeding also takes more of the reserves of the mother. Check this story of a mother of three, treated for PPD and severe migraines and extreme back aches and who needed to quit work and lie down often during the day, she went to the hospital and all they saw was a strange high B12 and they said she had MHBP.
Morning sickness, hyperemesis
Anemia but high folic acid intake corrects the megaloblastic anemia.
Neural tube defects
Low birth weight, small skull, underdeveloped brain tissue
Frequent crying, hypersensitivity
Weakened sucking and swallowing reflexes
Not smiling, no longer smiling
Developmental delay or regression after initial progress (due to breastfeeding-deficient mother)
Prone to infections mother and baby
Apathy
Sleep problems, insomnia
Hyperirritability, convulsions
General weakness
Crying a lot, crying baby
Abnormal movements (arms and legs), involuntary movements,ataxia
Insulin resistance
"Breastfeeding" icterus
Breastfeeding/ bottle problems, difficulty keeping vacuum at breast or bottle, people go for tongue tie release which doesn't help. Baby still drinks too little, even seems not hungry sometimes. Spitting, reflux. Refusing being fed. Refusing weaning. Refusing bottle instead of breast. Falls asleep while feeding.
Regurgitation, (silent) reflux
Hyperactive gagging reflex
Insufficient weight gain. Sometimes head circumference too small.
Anorexia
Reflexes that should disappear, stay longer
Also midwives can get B12 deficient helping mothers in labor with gas and air, check this case.
Mothers exhausted, "dying", needing extra help looking after themselves and the baby, check this mother who was bedridden.
Symptoms in children, adolescents:
Behavioral problems (mild to severe)
Depression (mild to severe)
Cognitive decline (memory, concentration problems)
Nausea, loss of appetite
Growth problems
Misdiagnosis your doctor thinks you have:
FND FNS, Functional Neurological Disorder/syndrome
SCD, subacute combined degeneration of the spinal cord.
Small intestinal bacterial overgrowth, SIBO Irritable Bowl Syndrome
Bipolar, (Post partum) Depression/ Psychosis, MHBP in mothers
Anxiety, Panic attack, PTSS post traumatic stress syndrome (with the heart palpitations for example)
"There's no aneamia, so you cannot be B12 deficient". Neurological and psychiatric symptoms very often proceed aneamia.
Fibromialgia, CFS chronic fatigue syndrome, Long Covid, Burn out, ME, MS. PAIS; Post Acute Infections Syndromes Like Covid or Lyme, biggest symptom is PEM; Post Exertional Malaise en POTS (dizziness on getting up).
ADHD, Autisme, attention disorders, behavioural disorders.
Failure to thrive, developmental delay.
Treatment your doctor thinks you should have:
Tablets, which don't work when you have malabsorption, it doesn't end up in your cells (neuropathy gets worse).
Injections, which they limit because your bloodlevels get "too high". Generally doctors do not observe the patient, they only look at bloodlevels. Or stop during pregnancy and breastfeeding (when you need them even more). Or because the NICE guidelines says every three months after a "loading dose"of only 10 injections. Although they have improved in 2025 the fact that in case of neurological symptoms, treatment with injections should be started, regardless of "normal" bloodlevels. And in case of little or not enough improvements more injections should be offered. So taking the NICE guidelines to your doctor is worth trying.
Which treatment you should you have:
Frequent injections until symptoms subside, only then frequency should not be lowered. Twice a week is the minimum for neuropathy for two years. Sometimes even daily. Patients need to learn to self inject, so they are not dependant of the GP office to give it to them whenever they think you can have it. Unlimited prescriptions. During pregnancy and breastfeeding B12 injections should not be stopped, the need is even higher.
What is reality:
Patients get only tablets. Or injections are stopped when blood levels are high, while the patient still suffers. Or in pregnancy the injections are stopped.
Patients get limited injections due to the NICE guidelines, although they have improved in 2025 the fact that in case of neurological symptoms, treatment with injections should be started, regardless of "normal" bloodlevels. And in case of little or not enough improvements more injections should be offered. So taking the NICE guidelines to your doctor is worth trying.
Patients end up having to buy injections themselves. Syringes and needles.
Sometimes it is difficult for patients to get the right information, but it is possible and also affordable for most people.
What if it really goes wrong, medical negligance cases won:
Hopefully your GP, internist or heamatologist or neurologist or peadiatrican or gyneacologist is familiar with B12 deficiency and can help you to get proper treatment in time and guidance. But there have been numerous cases where the doctors did not take the patient seriously. Here's the story of Charlotte who can no longer walk, they said "it was all in her head", as she was on anti depressants, a true other sign of B12 deficiency, and became numb from the waist down. She won. Here's another case of Jimmy, he also won.
Where can I get more help:
Hopefully your GP, internist or heamatologist is familiar with B12 deficiency and can help you to get proper treatment and guidance.
Patientgroups are there to help people to get further when you get stuck. Patientgroups on Facebook, Whatsapp etc.
You can contact me if you want more information and guidance also to learn how to self inject, just like if you had diabetes, it is not difficult. I am located in The Netherlands and Spain.
B12 is not a hype or alternitive medicin,
it is evidence based medicin.
References, literature, case studies, research:
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- https://myemail.constantcontact.com/Approximately-68--of-Pregnant-Black-Women-have-Vitamin-D-Levels-Below-20-ng-ml.html?soid=1102722411090&aid=gQRe_WqRaIM
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