Pernicious Anaemia Society

Extremely low B12 level

Hi All

I am new to this page and have myself today just been for second blood test to check for myself if I am B12 deficient - had bloods taken last week but the lab requested that the B12 specifically was tested for again - I will get my results probably on Monday. I am just pre-empting those results as my husband was tested a couple of weeks ago ( having self-diagnosed) and was found to have a level of only 30! I have not seen a level this low on any web pages I have found. He will have his 6th injection tomorrow but has already been told by the GP to just take supplements after that, and no mention of having to be re-tested at any point. Does anyone have any views on this? and is this level extremely low in your experience?

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Hi Christiecarl do you or your husband have any idea why you became B12 deficient?

Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

Weakness and fatigue

Light-headedness and dizziness

Palpitations and rapid heartbeat

Shortness of breath

A sore tongue that has a red, beefy appearance

Nausea or poor appetite

Weight loss

Diarrhoea

Yellowish tinge to the skin and eyes

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

Numbness and tingling in the hands and feet

Difficulty walking

Muscle weakness

Irritability

Memory loss

Dementia

Depression

Psychosis

Who’s at greatest risk for B12 Deficiency?

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Do either you or you husband "identufy" with any of the above "people"?

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you both well

.

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Hi clivealive thanks for the response. We are both vegetarian and have been for just over 20 years. We both made a conscious decision end of May last year that as we were both suffering a little with bloating ( presumed from eating cereals every day - we would maybe have 3 different types of fortified cereal in a big bowl and obviously had quite alot of milk with that) that we would stop eating cereals and started having two boiled eggs daily instead. I understand that there is still a level of B12 in eggs but we had cut out both cereals and milk and perhaps being vegetarian had already started to be deficient in B12 prior to making that change. We have both had a number of the symptoms with various GP visits but each symptom ( such as tiredness, apathy, blurred vision, palpitations, painful chest) has never been joined with others and looked at as a whole until over Xmas my husband also went on to suffer with a bad stomach ( for which he was prescribed lanprazole - if that is the correct name - and which we now know inhibits uptake of B12) , then more recently a heavily ulcerated tongue. Initially he was seen for this by a nurse practitioner who sent him away to gargle with mouthwash, but when this persisted and got worse he saw a GP after googling what could cause this symptom and all the pieces fitted into place - he went into that appointment armed with the information that he believed he was deficient. So it does look like we have perhaps caused this ourselves unfortunately, but it would be helpful if GPs joined the dots so to speak!

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Your vegetarian diet may well be the main problem and the Lansoprazole your husband is taking will only make matters worse. Hopefully your doctor will be "up to speed" on B12 deficiency.

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Your husband needs to be treated properly. Like this - hey.nhs.uk/wp/wp-content/up...

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Many thanks for this fbirder - I will read and digest thoroughly tomorrow

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was the test serum B12 or active B12 - sounds like it was active B12 - in which case it was low but not extremely low.

exactly what supplements was your husband told to take?

Sounds like your GP is assuming it is a dietary problem thought the stomach issues imply that it is probably an absorption problem.

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Thanks for your reply we believe it was serum B12 as my husband hastily wrote down afew details - so in that case would a level of 30 be extremely low?

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I don't think they would normally give a result that low for serum B12 as I think it is getting below the point where they can measure with any real accuracy. It would be extremely low for serum B12

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Yes, extremely low.

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Hi, I had my first loading injection today, my Vitamin B12 level is 112. I have been feeling unwell for the past few months, with depression, anxiety and blurred vision and palpitations. Please can people let me know how they felt after having injections every other day. As l have feeling more stressed then normal knowing l have a low Vit b12😬 as l am worried it’s serious. Thank you

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Hi Yennie5 - my husband who had a level of only 30 has just had his 6th and final injection today - he has said he already feels more energetic and more positive. He is now taking supplements as he has not been offered top-up injections - I think GP has presumed dietary reasons for deficiancy. Both my husband and I are abit more clued up now though so we will push for re-testing at some stage. I hope you're feeling better soon

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If your husband is eating animal products and still has low B12 then the problem is not with diet. Acid inhibitors can also cause non absorption of B12. Once you determine you need B12 injections, you MUST stay on them for life or use sublingual B12 in high doses 500mg per dose. If you want to be sure you are getting enough, best to do the once a month (1ml) shot for life.

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PS, it can take over a year to see how much healing will take place once on B12. If you or he were that low, then he probably had a lot of damage to the myelin sheath and therefore nerve damage. Nerve damage is very slow to heal, but energy levels will return fairly quickly.

Memory also takes a while. I don't understand why some doctors to a initial course of B12 then stop. if you have no intrinsic factor and cannot absorb, then you need to take shots for life. It is an easy cure, but used to be a death sentence for some like myself years ago.

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So glad your husband is feeling a lot better, what symptoms did you husband have? So very grateful to my doctor for requesting my to have the blood tests. Fingers crossed things will get better, got my second injection on Tuesday

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Hi Yennie5 Chest pain, palpitations, general lack of energy, breathlessness at times - all over the last approx. 9 months, just before testing had large lumps at the back of his tongue - once he'd googled this final symptom he put everything together ( which the GPs had never done - he'd had ECG etc.) and self-diagnosed that he could be B12 deficient so asked GP if he could be tested.

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Hi Christiecarl, are the supplements helping your husband? Is he still feeling ok x

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He is thankyou Yennie5 - I suppose it will take a awhile for us to counteract our actions ( if indeed brought on by our vegetarian diet) - we're both consciously increasing our intake. I should get my own blood test results tomorrow - the lab had asked for a 2nd test for B12 - not sure if this is perhaps because they spoiled the 1st sample or if checking readings were correct. I am going to ask for a printout of my results - an idea I have taken from comments on this site

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By the time doctors found out what was wrong with me, my b12 levels were undetectable. I had so many symptoms they thought I was seeking attention. Once you get on b12 injections and stay on them, there should really not be any further need to test unless you have returned symptoms.

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Just an update - just taken a call from GP surgery - I am borderline low on a B12 level of 156 so just told to take supplements. I can honestly say that since I went to the GP a fortnight ago have been going 'dipsy' as I would describe it to myself - unable to string a sentence together correctly sometimes. Even at work where I pride myself on being efficient and rarely making mistakes, my work colleagues have agreed with me that I have become 'unreliable' - in a joking way I hasten to add as they are a great bunch of people. So I will just have to sort myself out and go back if I feel the need

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I went thru some of these symptoms myself. I tried methylcobalamin injectable which I found online much cheaper and it worked wonders for me.

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