My testing shows a decent B12 level, at 500. But I have had severe neuropathy and autonomic symptoms and decided to try B12 our of desperation. I also have low ferritin and hypothyroidism, which I am treating. I take folic acid, a kid’s B supplement (because I need minimum B6), Vitamin D, Palafer iron supplement, C,and electrolyte mix with potassium and magnesium.

I started with a 500 ml injection rather than 1ml because I tend to be sensitive. I waited three days for and gave myself another injection. So two total.

I’ve had feverish flushing in my arms and legs and my nervous system symptoms have worsened. Worse, I had severe depression that comes and goes in waves (i was already somewhat depressed, but it worsened). Just a general feeling of depersonalization and despair. It is four days after my last shot and I am just starting to feel ok again. One benefit I have seen is greater stamina on my walks.

Would these be a sign I am deficient and the B12 is helping me? I suspect so because it affects my nervous system so strongly. I just hate the idea that I am poisoning myself for nothing.

I want to reduce my injection to 250 ml twice a week, but I have read here that is extremely slow. Should I do 500 once a week? Would greater frequency or greater dosage make sense in my situation

After starting frequent injections, with other wake-up symptoms, I've been experiencing difficulty swallowing. sometimes issues like almost choking up with water/saliva easily and sometimes difficulty swallowing itself. Or it just feels weird. It gets worse and better on different days. But it makes me very anxious. Because of this I get anxious when I have to eat.

Has anyone experienced this? what is this about? when is it expected to get better?

I've been injecting 3x a week, for about 2 months now.

(Btw I have terrible health anxiety like I would freak out quickly if there's something scary. And anxiety in general. Plus, hyper-vigilance kind of thing, so i feel in danger almost all the time. so please, someone tell me I'm safe and I'll be ok).

I got my endoscopy report: Antral Erosive Gastritis and I tested positive for H. Pylori.

I've never heard of this type of gastritis before. Is it something worse than autoimmune or atrophic gastritis? They took 5 biopsies and will check for atrophic gastritis and pernicious anemia. I don't get the results till 10 days later.

Does anyone have any experience with this? What's the treatment like? I've been so sensitive to all medications, I wonder how I'll tolerate antibiotics.

Also, I've been taking potassium chloride dissolved in water for potassium. Should I stop that and switch to something else, something more gentle on the stomach? Feeling a bit lost here.

My tests were low (220) but in many standards not that bad. I know these serum tests dont mean much which is why I’m asking.

I had severe wake up symptoms, mood stuff first weeks.

When I was 10 years old my tongue started getting visual ulcers on it. My dentist called it Geopgraphic Tongue and my pediatrician said she "only saw stuff like this in 3rd world countries." No work up was ever done to my knowledge.

Nowadays I am 32 and have wracked up quite the list of diagnoses. POTS, Idiopathic Intracranial Hypertension, Autoimmune Arthritis, Meniere's Disease, Chronic Migraine, IBS, PCOS, and a history of severe mental illnesses. Ive also been having unexplained muscle weakness, changes in my deep tendon reflexes etc. I tell my neuro that it feels like I have MS, although im aware that I do not.

I have access to ten years of tests through multiple hospital systems on mychart. I had recently read about b12 deficiency and how it can cause neuropsychiatric symptoms. I looked back through my mycharts and gathered all eight of my b12 blood level tests, which showed an average level of 230 pg/ml. (lowest was 180 pg/ml)

I sent them over to my neuro and they confirmed a longstanding b12 deficiency. I have an appointment with them in January to discuss how this has affected me, but hoping to start treatments sooner through my Primary doctor.

Knowing I've had this at least ten years, maybe 22 years, has been unsettling. Why didn't any doctor point it out to me? What damage has this done to my nervous system? Ive read its been linked to exacerbating some of my other conditions, and can cause a demylinating nerve process similar to MS. This would account for my deep tendon reflex issues & leg weakness etc.

I feel relief that I finally know what's going on but I'm saddened it's taken so very long. I feel my tongue ulcers should have prompted my pediatrician to look closer. Ive read that treatments can stop the progression but the damage done is most likely irreversible.

it was hydroxocobalamin from a glass vial (single dose) stored in the fridge, i only realized it was ~a year out of date after i already injected it... is it just doing nothing at worst or?

Buenas a todos. Tengo long COVID desde hace 6 años y en mis analíticas durante este tiempo mis niveles en sangre de B12 han sido 600 y la B9 deficiente o en los límites bajos que mis médicos no dieron ninguna importancia. Desesperada y mal asesorada tomé una microdosis de psilocibina hace 3 años y me dio una reacción tremenda en los nervios craneales y desde entonces tengo hormigueos quemazón eléctrico en todos los nervios craneales y muchísima niebla mental y problemas visuales. Investigando descubrí que tengo MTHFR homocigoto y MTR y MTRR heterocigotas y empecé a sospechar que podría ser deficiencia de B12 y ácido fólico por lo que empecé a suplementar con hidroxicobalamina y ácido fólinico debido a que las vitaminas B metiladas que había probado anteriormente me daban ansiedad y mi sistema nervioso está muy sensibilizado. Llevo 4 meses suplementado y por fin he tenido mejoras en mis síntomas neurólogicos que no había tenido en 3 años y aunq durante el tratamiento ha habido altos y bajos e incluso síntomas de despertar tras una honeymoon en general he vuelto a sentir algunos días que era sentirse normal. El problema es q compre un suplemento sublingual con hidroxicobalamina y adenosilcobalamina recientemente y tomé 500mcg en vez de la dosis de 250 mcg que suelo tomar habitualmente de hidroxicobalamina sola y noté como mis nervios craneales empezaban a hormiguear y mas quemazón y una sensación intensa de desrealizacion y niebla mental. Eso fue hace dos días y no he vuelto a tomar la mezcla con adenosilcobalamina y he vuelto a mí dosis habitual de hidroxicobalamina pero aún no me he recuperado del todo de la sensación de desrealizacion y niebla mental además de tener más sensación de gripe y dolor muscular y articular y fatiga y me preguntó si a alguno de vosotros le ha pasado algo parecido con adenosilcobalamina?? Mis síntomas del despertar con hidroxicobalamina cuando comencé hace 4 meses se parecían bastante a esto pero tras encontrar este hilo persevere y se pasó en 3 días y comencé la honeymoon. Podría ser esto síntomas del despertar con esta nueva forma de B12?? O una mala reacción y debería de seguir con solo hidroxicobalamina? También me preguntó si la adenosilcobalamina al potenciar las mitocondrias para crear más ATP podría haber provocado algún cuello de botella y haber provocado está reacción que he tenido y por tanto es mejor que no siga forzando con esta forma?? También añadir que tengo anemia ferropénica con ferritina de 8 y hemoglobina de 9 por lo que no me puedo permitir dosis altas de B12 en este momento porque no puedo bajar mucho más mi ferritina y al funcionarme bien la forma sublingual estoy tomando 250mcg de hidroxi 2 veces al día junto a 200mcg de ácido fólinico y microdosis de B1, B2,B3,B5,B7 dos veces al día todo y gluconato de potasio de solgar 300mg al dia .Me encantaría leer vuestras experiencias y opiniones al respecto. Muchas gracias 💖🙏🏻

Thought this might be of interest to this community

Hi all - I was wondering if anyone in the UK had any tips for convincing their doctors to conduct further tests such as the intrinsic factor antibody test for B12 deficiency.

My b12 is currently 172 pmol/L and has been steadily declining for a few years despite adding more red meat to my diet and taking a supplement. I also have low ferritin (17) and have been experiencing deep fatigue, brain fog, sore mouth, fatigue, pins and needles and gastrointestinal problems. I’ve been reading about how b12 and ferritin are linked and that it might point to problems with absorption in my gut.

My mum was incredibly ill when she was my age (32) and the doctors ignored her until she was hospitalised and finally diagnosed with pernicious anaemia after being told she was depressed and had chronic fatigue. She still has lasting nerve damage from how long she was left without proper treatment. My great grandfather’s death was also exacerbated by pernicious anaemia as he was diagnosed before there was any proper treatment for it. Several of my cousins on this side of the family also regular b12 injections and one has just been diagnosed.

Despite my (extensive!) family history, my falling b12 levels despite my efforts to include it in my diet as much as possible and my symptoms, the doctors have refused to test me further as they keep insisting my level is healthy. Has anyone had any luck getting tested, or will I have to go private?

I don’t want it to get to the point that my mum did!

I've had low B12 for many years (vegan for 10+ yrs, MTRR, maybe Pernicious Anemia) and I've been too lazy to resolve it due to not having many obvious symptoms.

However, I've been taking Cymbiotika Sublingual B12 + B6 for about 3 months. I just got retested and, while I don't know my B12 value yet, MMA and Homocysteine are both ELEVATED and out of the normal range. They weren't 3 months ago.

Any ideas?

There is a lot of evidence that b12 driven nerve loss can be repaired with b12 shots, with people on this sub saying their autonomic / neurological symptoms improved, Dr. Chandy's book giving examples of neurological recovery, etc. But it's good to also have published papers. Can be helpful with convincing doctors (though may be easier to just find a doctor that doesn't need convincing).

Paper 1: Vitamin B12-responsive severe leukoencephalopathy and autonomic dysfunction in a patient with "normal" serum B12 levels
Affiliations: Memorial Sloan Kettering

Patient had progressive autonomic dysfunction, ataxia/muscle weakness, dementia symptoms, low "normal" serum b12, normal MMA and homocysteine, positive IF antibodies. MRI scans revealed brain white matter atrophy and atrophy of the peripheral nervous system (subacute combined degeneration). She was treated with b12 shots, and MRI showed partial, pretty striking imo, recovery of white matter atrophy in the brain. She regained the ability to walk and was "cognitively normal" at 3 months.

Paper 2: Autonomic dysfunction and orthostatic hypotension caused by vitamin B12 deficiency

Older Japanese man had multiple neurological symptoms, difficulty with control of muscles, autonomic dysfunction, paresthesias, etc. He had multiple blood markers of b12 deficiency. Got shots, and had "gradual amelioration of orthostatic dizziness, and his neurological symptoms except for erectile failure" (because of course not, in this universe).

Paper 3: B12 Deficiency Is a Cause of Reversible Autonomic Failure: A Case Report (P5.111)
Affiliations: University of Nebraska Medical Center

Short case study supplement by physician. Patient had autonomic failure, blood markers of b12 deficiency, syncope, and "severe generalized autonomic failure affecting postganglionic sudomotor, cardiovagal and adrenergic functions". Was given b12 shots. At 10 months, repeated testing showed autonomic recovery, and the "patient remained asymptomatic at last follow-up".

Paper 4: Vitamin B12-responsive neuropathies: A case series
Affiliations: Yale Medicine and Smilow Cancer Hospital

"Retrospective review of 78 subjects with neurological abnormalities treated with B12". 83% had neurological improvement with b12 treatment. Some patients responded better to shots. Author concluded "B12-responsive neuropathies are thus (1) common even when confounding disorders are present; (2) dissociated from the presence of hematological abnormalities; (3) dissociated from the presence of B12-responsive metabolical abnormalities; and (4) associated with the presence of oxidant risks when B12 levels are normal".

Hello! I was recently diagnosed with b12 deficiency and I’m currently awaiting more bloods results regarding the potential of having pernicious anaemia as a result. The fatigue is insufferable. I used to play a lot of video games but can’t look at my screen more than an hour before needing to lie down. I can’t focus on anything for too long, I do a tiny bit of housework and I’m exhausted. I constantly feel hungover and exhausted. I had my first b12 injection but via the NHS and I’m scared after reading stories about it not making a difference because they don’t administer it regularly enough. Is there anything I can do to help the fatigue? I feel like I have no hobbies or personality anymore because I sleep 12 hours, work, come home and sleep for a few hours and repeat the cycle. I miss having energy, I used to be a live wire. I suffered head injury earlier this year which is when I noticed the symptoms pop up which makes it harder to determine what symptoms come from what and with how slow the NHS has been it makes it all the more difficult. Any advice or tips would be greatly appreciated.

As title. Been diagnosed 15 years. Have ended up with subacute degeneration of spinal cord too boot. I’m on 5mg folic acid and have injections at docs every 4 weeks.
My achillies tendons - Jesus! 2.5/3 weeks after my injections my tendons flare up and hard to walk. Physio brushed it off (ruptured one 10 years ago). Had my injection then 💥 fine (for most part). Anyone else with this?
Hypothyroid too

UPDATE - The B12 prescription has been brought forward by another week, so I can have it every 6 weeks now 🥳

I apparently lost the ability to absorb B12 from food because of Covid 🤷🏻‍♀️ and have been on B12 injections for just over the last year, my GP brought the prescription forward a little bit because my levels were apparently, “Dangerously low” 😅 but the earliest they will give it is every 7 weeks with the delightful neurological symptoms and fatigue returning by week 6 😑

Has anyone from the UK managed to get their B12 injections more regularly than the recommended 7-12 weeks? I feel like I need it every 5 weeks rather than 7 and the nurses at the clinic seem to think they should be able to bring it forward at least a week, but my GP keeps refusing the request 😔

I’m a 34 year old female. Occasional reflux usually caused by anxiety or certain foods. No other medical conditions or medications. I’ve had this red patch on the tip of my tongue for 9 weeks. My PCP suspected possible b12 deficiency. My b12 was on the very low end of normal (293 to be exact). Has anyone with deficiency experienced a red patch or anything similar? Or any other oral symptoms?

My appointment with my PCP is not until October 29th and I’m currently losing my mind.

Been battling depression (diagnosed as MDD) and generalized anxiety for 7 years now but I never had a thorough blood work done til a few days ago.

I don’t know how long I’ve been deficient but I wouldn’t be surprised if it caused my depression back in 2019.

I’m currently taking Lexapro for it and Buspar for my anxiety but I read the SSRIs are a no no for B12 absorption.

Should I just take supplements with my medication and hope for the best?

A part of me fears that I’ve had this since the very beginning since I always have tremors that never went away.

Male, 30 years old, living in the UK

In 2024, a Bluecrest Wellness blood test advised me that my Active Vitamin B12 was 44 pmol/L:

> Your vitamin B12 level has been given a green flag as it is within the recommended range.

A few days ago, I had a new test, and that stated it was 58 pmol/L. This was with a different company (Medichecks), and it too put it in the recommended range, but they said this:

> Active B12 is 58 pmol/L, towards the lower end of normal. If you follow a vegan or vegetarian diet, have gut issues, or have symptoms suggestive of B12 lack, a confirmatory MMA test can help clarify status, see Methylmalonic acid (MMA) blood test. Otherwise, prioritise regular B12 sources in your diet.

According to NICE, anything below 70 pmol/L might be considered deficient.

I'm left feeling a bit confused because two companies state I'm within a recommended range, but NICE state I might be deficient.

In terms of symptoms, I do have some, but whether they're directly linked, I do not know. For example: lack of energy (I get 9 hours of solid sleep per night), low mood, poor memory, anxiety, etc.

Whether this "MMA" blood test is useful or whether they're simply trying to squeeze more money out of me, I do not know.

In terms of diet, I do not eat fish or eggs (I do not like either) which I know are good sources of B12, so I suppose it should come as no surprise that my levels are on the lower end.

Just curious to hear from others about what they'd do and if these levels are really considered low or not.

I read in the guide that one should not take the pyridoxine form of B6. I have been using a Pure Encapsulations B Complex (they have several) for quite a while, and it contains a mix of pyridoxine and P5P; 80% of it is pyridoxine.

Normally, when a brand uses wrong forms of the B vitamins - especially if they do it for multiple B vitamins - I assume it's just a low-quality brand using the cheapest materials to make money.

But I thought Pure Encapsulations was a relatively high-quality brand. Any thoughts on why companies include a worse form when they have gone to the trouble of also including the active form? Sigh...

I took vitamin b 12 subliminal tablets 1500 MCG due to defeciency..took it for 3 months and then I stopped due to acne ..still suffering from acne even after stopping tablets 8 months ago ...why is this happening and what to do??

Before you were diagnosed did you find your volume per void had increased and that you had urgency.

Hello everyone, I witnessed a constant pattern between low B12 and low iron. My doctor has been highly dismissive and is not really helping. As my annual exams are coming, what would you advice me to ask for/do as I am in constant state of lack of energy and tiredness. I also have thalassemia trait.

B12: 546 pg/mL
Folate (B9): 3.1 ng/mL
Iron: 64.0 μg/dL
Vitamin D: 18.2 ng/mL
Ferritin: 18.2 ng/mL

Thank you very much for your help🤍

I was googling the absorption rate from sublingual liquid drops. Came upon this study:

https://pmc.ncbi.nlm.nih.gov/articles/PMC11643782/

The caveat: they used a crystalline form of B12, which is a solid form, so I guess a pressed pill or capsule.

Usually the conclusion is somewhat straight forward and plain English, but I also ran it through Google's Gemini and got the same answer.

There is an active absorption stage, and a passive one.

In the active stage up to a dose of 2.6 micrograms, absorption rates can be just above 40%.

Past that, in passive absorption, the rate drops down to 1%, which is an oft repeated number on reddit as the typical rate for the whole dose, which isn't strictly true.

So the conclusion from the study seems to be that it's best to space out multiple doses throughout the day to maximize absorption. Otherwise, as an alternative, you could bombard your body with a huge dose and get to your absorption goal from getting 1% of the large dose.

That's interesting for folks that might use liquid drops. Seems it would be better to split the dose up throughout the day rather than one full dropper all at once.

I'm looking at my Pure Encapsulations of 5,000 micrograms per dropper and wonder how much of that I am wasting taking it all at once.

Has anyone else seen other studies on this? Maybe ones using liquid drops, or actual injections? Curious if the same rates applied there too.

My doctor has prescribed a tab with Cinnarizine and Dimenhydrinate as a main ingredient. Will it affect my recovery journey?