Pernicious Anaemia Society
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B12 deficiency

Hi everyone!! :)

So a couple of weeks ago I discovered my b12 was 131 ng/L and my doctor refused to inject me. Since beginning of May (6 and a half months ago) I have been having weak hands, it was hurting to type, and text. I was waking up screaming because of the wrist pain and was falsely diagnosed with carpel tunnel syndrome. Recently the nerve pain spread to my feet and then entire body. (along with heart palpitations,confusion, dry mouth, sore neck, weird pressure at the base of my skull/ back of neck, a fuzzy feeling in my head). I started supplementing on b12 a month ago and most of these symptoms have gone away, except for some nerve pain but it has lessened! However my hands (fingers, wrists, arms) still hurt when I use them too much.

I don't have any other medical conditions that I'm aware of other than Irritable bowel syndrome (I just get diarrhoea a lot). Also I've been vegetarian for years, however I eat eggs regularly. Here is my blood test but its normal enough, except for macrocytosis and b12 is low, though doctor told me it wasn't low. Does anyone else have IBS? I'm wondering if this could cause a deficiency.

Also does anyone else experience pain in their hands/wrists? I mean not just numbness/pins and needles, but actual pain that's makes household chores difficult. My arms have been much more affected than my legs, which seems uncommon. I was feeling like a 90 year old woman while struggling to text on my phone. (I am 25)

Also:

Folate: 14 ng/L

Ferritin: 17 ng/L

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How old u are

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I'm 25. Why? :)

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Bcz i m also digns wth b12 def in june since tretmtn strt injection wth b12 tablets.. I m 22 years old.. Nd i am suffrng almost urs symptoms.. Like dry mouth.. Heart palpitations etc.. It almost 5 mnths .. Nd yes ibs also is my symptm.. Wht was ur b12 supplements.. I mean how much mcg?

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I take 50 μg mcg a day. How much do you take?

Have you been taking them every day for the last five months?

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first i was on 7 injection on alternate days.. Then weekly for 8 weeks.. Now i m on mnthly injection....nd tablets folic acid + b12( 150 mcg)

My b12 was extremely low.. Like deadly

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U also feel dizzy/balance prob?? Nd heavy legs??

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Yes I felt dizzy, I once felt like I was spinning...or like disconnected from reality. Hmm I have weak muscles in my legs if that's what you mean. Are you getting better?

Also what number was your b12 when first diagnosed? :)

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My balance prob is almost wth me 24/7 ..nd my b12 level was unrecordable( under 50).. Dr. Says.. It takes tim like 1 year.. To feel almost fine..

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Do you still have nerve pain? 1 year wow that is a long time.

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Ya.. Smtims neck pain and legs..

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Oh maybe the neck pain is muscular? Or is it nerve pain? I guess nerve pain is more shooting electrical feeling. I read you are having a similar pain to me at the back of your neck, for me I think it was just from weak muscles. Maybe it will resolve in time, I didn't have it before I became deficient and its improving.

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I’m surprised you wasn’t offered injections . Do you know what range was as this can vary not just from country to country but also counties. For instance my level was 137 in range 189-900 and was given 5 injections over 2 weeks then on 3 monthly but I had no neurological symptoms.

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Yes I'm living in Ireland, I called lots of doctors and they told me this was not a deficiency, here the range is 120 -650 haha. But they do not have much knowledge about this. You are lucky to not have neurological symptoms, I have been quite weak. What were your symptoms and how are you doing now? :)

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I have mostly normal days some I can be tired especially on lead up to injection but a b12 spray has got me through so far when start to feel tired again . Before diagnosis had dizziness, heart palpitations, low appetite lost 8lbsin a month and only weighed 8 4 , sweating, anxiety, felt like ants in my head it was awful.

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Yeah I got the anxiety as well, like a disconnected panicky feeling. Thankfully that's gone with supplementation. How long have you been having symptoms for, and when did you start medicating?

And I might look into getting a spray :) Why did you choose it over the pills?

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Bro I am 25 years old and my b12 deficiency symptoms got apparent since April of this year. I had IBS and most of your symptoms. You're taking very low dosage also I have been supplementing with b12 first orally then syblingually with 2000mcg daily. I thought I was getting all of it then the doctor told me you absorb only 1% of that and told me you have been mismanaged and prescribed me injections daily for 7 days then alternate days for a week and then weekly. The game changed after my second week. The dizziness almost stopped and my central focus came back which wasn't getting better for the past 6 months. So ibs is gone most symptoms are gone and I am improving daily but slowly. So I suggest you find a doctor who can give you b12 shots otherwise you will eventually permanently damage your nerves if you don't get high dosage of b12 through shots. Also check your vitamin D levels and drink vitamin D ampoules because b12 and vitamin D deficiency coexist together. GET THE SHOTS! and increase your tablet dosage!! You think you're getting better but trust me that improvement is very slow and will take you years to recover while causing permanent damage to your nerves however with b12 shots you will see the real improvement and then thank me later. I want you to pray for my success in this world and the hereafter once you get better Ok?!

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I have never had tablets was given injections and brought spray on lead up to jab as head started to go funny started loading July and first 3 monthly October so very new here too . But you are very young so hope you get sorted soon.

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Hi xiarei

It is well documented that vegetarians present with B12 deficiency overtime due to not eating foods containg B12. Also the tingling and numbness in your hands could be repetitive strain injury (RSI) in your hands an wrists due to typing and texting...

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Hi everyone! This is my fist post here and I am compelled to do this because this year was the worst for me. I am struggling with IBS for years now and this may lead to b12d for me too even at the last testing the level was 217 pg/mL (range is 193 - 982) and in may it was 287. Also vitamin D is 14.68 ng/ml (way lower than a normal 30).Folic acid is 5.43 ng/ml (range 3 - 17) and ferritin is 148.44 ng/mL (pretty good I say). So my problem is a general disturbance in digestive system (stomach ache, colon cramps) also pain in pelvic region (bladder, prostate, urethra). Weak, muscles, pain in lower legs and mostly a disturbing dizziness in my head, pain at the back of my head (especially when working on something). And flushes of heat and sweats!!! I have a strange sweet taste in my mouth for months now and the doctors don't know why (no diabetes) sore throat and cough sometimes (irritated trachea also...) Other disturbing symptom: frequent urination -2 times an hour(like water is not staying for long in my body). And of course...anxiety (taking Anxiar each day). Do you think the B12 deficiency can cause all that and the shots can be a solution for me?

Doctors say am have food intolerances and allergies so I am taking supplements with B12 and lactobacillus and other minerals for a week now, but it seems worse. The pain in lower abdomen is worse every day. And the dizziness too...

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Hi Lionel, Vit D level needs to be up to 125nmol/L if well and healthy.

If ill then we use more vit D even if have a cold, gets used up more rapidly. People take 2000iu per day to keep a healthy level and increase to say 8-10000 iu temporarily even if just have a cold to get their vit D serum levels up to defeat the cold

Vit D is not just reqd for bone health it plays a massive part in all functional pathways. Recognise the importance - there are receptors for vit D on every cell. says it all.

People who have Cancer, their functional doctor practitioners (note not NHS) get their levels up to 200iu or higher.

I presume you are US as quoting ng/L - see the US Grassroots vit D research council website. They have lots of advice based on research. They have a chart correlating vit d blood level with specific disease protection. Basically min levels should be no less than 30ng/L Best 40 -50ng with anyone with health issues/ symptoms 50-60ng/L

Watch you tube video of Prof Bruce Hollins, 30yr researcher vit D

Also watch you tube video Ivor Cummins - vit D debacle

Google practioner Chris Kresser (he's very conservative re vit D and Chris Masterjohn) You are lucky in the US. Get yourself off to one of the thousands of Functional Medicine Practitioners/Doctors. See James Maskell's Functional Forum monthly video podcasts. Many Doctors in the US have been trained in Functional Nutritional Medicine (find the root cause and most cases treat with nutrition) Functional Forum have also set up a cheaper alternative to US med insurance to subscibe to for Finctional Medicine Health Insurance.

Wish we had your options here in the UK.

Also note: ferritin 148 is I would say, is anything but good. See Chris Kresser re Ferritin Healthy levels (same measurement equivalent US/UK) according to Chris Kresser 65-75 ng is healthy. Nothing above 100ng is healthy. High ferritin is often a sign of inflammation. Your body will sequester iron into storeage therefore into ferritin so as not to leave free useable iron in the blood stream. The body sees inflammation as the body under attack from bacteria/pathogens which feed on available iron not in storage. Have you had your CRP C reactive protein levels checked - a measure of inflammation. Have your full iron panel taken which is iron available to cells so serum iron, transferrin %. If low end then that could be why ferritin high. Ideal healthy CRP should be 0 or less than 1. IBS will probably mean high/highish inflammation and subsequent high ferritin storeage.

If your CRP level is low and serum useable Iron good level and transferrin % around 30. Then your Ferritin is just high. Women tend to have ferritin below 100 and much lower heart attack risk than men because they bleed every month which lowers iron /ferritin and keeps at a healthy level. Once a woman goes through menopause and no longer bleeds then their heart attack risk increases to that of men because their iron levels go up. The way to address then and lower is to donate blood several times per year. Unless you have low serum iron like me and then - well I am still trying to find out what to do.

I know - I can co oberate what Chris Kresser states. I have high inflammation /CRP because of Rheumatoid Arthritis - I have had to learn all this. Through the menopause my ferritin has gone up to 148 from below 100. Since having RA 22yrs my iron will have been sequestered into storage - ferritin but the monthly bleed will have kept low/healthy range. I would love to donate blood to lower ferritin but my serum iron is on the low side.

Look at your full bllod count blood test. Not just haemaglobin. MCH and MCHC show the quality of haemoglobin in blood cells. The amount of haemoglobin in cells and the concentration - respectively. If low, towards bottom of range or even below - then blood cells under microscope would look pinker rather than red. So not as good an oxygen carrying capacity. Iron and B12 make haemoglobin. Not just iron. With me, I have both low iron/ high ferritin and B12 def going on :(

Have you looked at excluding not just gluten but all grains - the first thing to do to lower inflammation in the intestinal tract and brain.

Grains especially wheat make the intestinal tract tight junctions open in everyone along with high lectin foods, meds of anykind and unbalanced microbiome - too many negative as opposed to beneficial gut bacteria/microorganisms which promote destruction of intestinal wall by LPS waste product of negative gut bacteria. Sugar in diet which includes anything that rapidly digests to sugar such as grains promotes the thriving colonies of bad bacteria/organisms. A sugar free diet, one rich in fruit and veg will promote colonies of beneficial bacteria that keep the bad guys from growing out of control. Certain species of beneficial bacteria message the cells of the intestines to repair wall and multiply. You need the beneficial bacteria and you need to feed them what they need to thrive or your gut wall will leak. And Proven that when the gut barrier leaks so does the blood brain barrier - so anything can get through to destroy. See Dr Perlmutter: Grain Brain, Brain Maker, Psychiatrist Dr Daniel Amen - books, Dr Datis Kharrazian book: why is my brain not working - you will find all have you tube videos. All recommend urgently first step - Grain free, microbiome support.

You may even find Dr Natasha Cambell McBride's GAPS Diet (google) short term to address state of intestines/ SIBO (small intestine bacterial overgrowth) the bact in lower bowel move up to the small intestine as the health of intestine and foods eaten deteriorate. Your body will heal, you just have to give it a break and the nutrients it needs. That's what I am banking on :)

Please look at my reply to the others re vit B12 and really useful link to video.

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Sorry Lionel - Vit D watch Dr Bruce Hollis (not Hollins)

Also typo vit D cancer patients 200nmol/L not iu that would be 200nmol/L is 80ng/L.

Also fogot to say - so important to take vit K2 when taking vit D3 (that is not K1 blood clotting) but K2 which is made by bacteria and is a fat soluble vitamin like D. Work together. Vit D grabs on to calcium in diet and makes absorb. K2 is a co factor and stimulates enzymatic function to ensure calcium is deposited in bones and teeth where it should be rather than gravitating to soft tissue like heart muscle and arteries. You dont want hardening of the arteries to the brain or hardened heart tissue. Take K2 mk7 in supplement (amazon) see Kate Rheaume Bleu's book/you tube videos 'The Calcium Paradox- a little known vitamin that may save your life'

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Thank you Lynne for making the time to share that information. My iron serum levels were a little bit high when tested this month. But CRP C is OK. tested in spring. Doctors say I have an inflammation but where? In the gut/colon? Calprotectine test was OK few weeks ago. Just DAO is higher somehow (around 50). So I am fighting some allergies or intolerances. I started a gluten free and lactose free diet 2 weeks ago...but I am not feeling better.

PS: I am not from US, but from Easten Europe (Romania).

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Hope helps you :) Gluten free (and dairy free) is the way to go but not gluten free products - they are just opportunist marketing of unhealthy foods often. If just omit all grains if can, as all grains contain different glutens. If you google Glutenology Dr Peter Osborne - lists everything that contains gluten. Shocking list. If you have inflamed intestines you probably need to look at healing your gut lining first, which won't happen if eating any grains. So Collagen/bonebroth - lots of and easy to digest cooked vegetables. See the GAP'S diet, see if you feel any improvement with this simple diet. I think stage 1 then maybe quite quickly to stage 2. And eventually move off GAP'S and slowly introduce 1 food at a time with at least 1 week between each reintroduction of a food - looking for symptoms x

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Maybe you should write a new post, as this has come up as a reply to a post. Click on home and it will take you to where you can write your own post.

As it is a reply, it will be missed by other members.

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I have what I think is B12 def. V bottom of the range with symptoms. 6yrs agoI developed burning mouth (feels like mouth,gums,tongue, lips have been scalded. I scoured the internet, everything I could find from sufferers came up B12 def. I asked Gp for B12 blood test. Came back normal - as she said - no worries, pat, pat, go away. My result was 191 Range 191 to 550. They have since raised the range to 197 - 550.

So I started supplementing b12. The burning mouth disappeared. But as I didn't supplement consistently because I was lulled into 'Oh, my doctor's not worried attitude' it would come and go.

This Jan, 6 yrs later, I woke up one morning with burning mouth (which I can tell you is horrendous) Burning hands, burning feet, palpitations and noticeable memory issues and recognised breathing much harder when climbing hills when walking the dog but also climbing the stairs. And vision issues. These are all neuropathy symptoms - which means brain is being damaged.

I convinced my GP (I think) that this is an issue and with help from folks on here with documents etc she referred me to haematotogy. Who despite their own guidelines (treat symptoms - not blood levels) immediately rejected the referral. Because I had been taking supplements my B12 blood level was within range. So like many others, I am on my own

Note it takes years to get to such damage of the brain and organs like the heart and oxygen carrying red blood cells before you actually notice symptoms and so it takes years to repair. I was told by someone that you don't start to repair the damage def has caused until B12 levels are up well above 1000 consistently.

As the NHS are ignoring my plight, I am taking Jarrows methyl B12 5000mcg tablets (amazon) that disolve in mouth, 1 per day and 3000mcg adenosyl B12 (seeking health brand from Amrita website) The 2 forms we need and absorb and so do not need to be converted into a methyl and adenosyl form by the body) Not expensive.

Also note: different countries have different normal ranges - NHS are certainly living in the dark ages or the times of Scrooge. Japan for instance min normal blood level before intervention is 500 Range 500 to 1300 ! Japan's population has far less heart attacks and dementia and alzheimers - says it all really

Watch this video re B12 issued by the B 12 def website and visit the info on there web pages

b12deficiency.info/films/

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I'm b23 deficient and my hands fingers and wrists cause me spuch pain, when it's at its worst I SI every other day. I can't even hold a tray with empty cups on.

Have you ever considered SI ?

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B23? Whats that or do you mean b12? Hmm I'll look into self injecting because doctors won't believe me that Im deficient. Also may I ask how old are you?

Thanks :)

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I do mean b12.

Im 52 was diagnosed in 2015 but had Maher stomach surgery in 1999 and should of been on it since then.

I was a sorry state by 2013 but much better now compared to then.

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How long have you been supplementing for? And how long have you been showing signs of deficiency? I'm just wondering how long recovery takes..heard its a long road

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I was showing signs for year and years at least 10y before they tested b12 level, it all went very quickly from there as it was only 77.

I started to feel the benefit after loading doses but felt terrible when they finished and I had to wait 12 weeks. I then found this site and starting soon everyday till I started to feel better.

For some reason I'm not doing to well at moment, aching legs, hands fingers, tired beyond belief, dizzy, so from today I'm going to si daily till I improve.

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Hmm it sounds like you have problems absorbing b12? I think it is because I am vegetarian or else IBS.

So you went 12 weeks without any injections or pills? Just wondering why your symptoms have returned. I just started getting injections but doctor said it should be okay to stop after a month!

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I don't know why either, doctor did bloods on Friday to see if any infection is in my body, I will get those results tomorrow.

Pain at top of my spine is awful.

Do you feel any difference yet?

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Yeah I am noticing a big difference but of course I'm still having some weakness, I heard it takes a long time which is a pity.

How did your results go? How are you doing? :)

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Results were good I have no infection b12 & folate high I'm going to ask for printout tomorrow.

Feeling much better on daily injection, still some pain but not as bad now.

How are you doing?

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B12 ... 1520

Folate .. 35

Doctor has stopped folic acid as he said dangerous to be high.

B12 stays the saa at 3 months jabs but I'm staying to si daily for now.

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That should be ' started si' not soon

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Hey Xiarei,

I am 31, I am a vegetarian too and following pregnancies I started to get B12D symptoms, but it took me time to realize.

I also have pain in my wrist, elbow and fingers although my back and knees are worst. Carrying the full water pitcher is very painful (the wrist) for instance.

If I have to order the pain: back > knees > neck > wrist > elbow > fingers

I started to supplement 6 weeks ago (2000 mcg/day then 1000 mcg/day), anxiety with panic attacks calmed down almost immediately but my nerve pains take more time to ease. I now have the feeling I am 60 (I was also feeling I was 90 before I started to supplement ^^), in a hurry to feel like a 30 y.o. :)

Looks like it takes plenty of time ;)

If you are a vegetarian and do not eat so much dairies, your B12D probably comes from your diet. Instead of (or in addition to) getting injections you could take 1000 mcg or 2000 mcg oral pills because 150 mcg is very low. And also take all "cofactors" you need to recover.

I hope you'll feel better soon!

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How long were you having the nerve pain for? I've been having the nerve pain for over six months, its been very hard!

Did you have back pain before this? And you're not pregnant, haha? :) I have back pain but that was present before the deficiency. Although I did get pain/ pressure in my neck, which is new and related to deficiency (and is subsiding gradually...because like you I've been supplementing for a month with b12)

Yes my panic attacks have subsided too along with 80 percent of the confusion/ dizziness. And my hands now feel warm and more free! (but they are still weak)

haha yes at least we are getting younger every day ;)

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I am vegetarian since I was born.

First pregnancy 5 years ago, I supplemented a bit and probably not enough (low B12 pills) during the pregnancy but stopped when my daughter was born while breastfeeding. After that I had back pain mainly during the night and in the morning, fatigue and very low appetite.

2 years ago, I started to have knee pain in the airplane or train.

1 year ago, new pregnancy (miscarriage after 3 months and two successive miscarriages after 2.5 weeks) => elbow pain by night, neck, wrist, ankle when I walk, coccyx, pelvis, sore throat, plenty of anxiety, confusion, fog, memory problems, migraine and nausea during menstruations, numbness in hands and feet, and many other symptoms. My GP said I had fibromyalgia. I did the B12 test on my own, B12 level was 138.

I am still not sure all these pains come from B12, I hope so though!

I am pretty sure anxiety and fog came from B12, because they almost disappeared like yours did :)

On the other hand, since I supplement I have acne, and quite often nausea and migraine. Looks like magnesium and potassium (banana, coconut milk) help for that.

When did you become vegetarian? Are you sure your back pain came before?

What were the first symptoms to appear?

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Yeah that explains why you'd be deficient, I'd been vegetarian for most my life, started when I was about 8/9 years old because I cared about animals. (although I am eating fish now because of the deficiency)

I have a little nausea from supplementing too.

Yes I had back pain before because I broke vertebrae in my lower back. But maybe the b12 could be causing it for you, it does weaken your muscles. Have you had the back pain for 5 years?

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