Low B12 with neurological symptoms - Pernicious Anaemi...

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Low B12 with neurological symptoms

Kish2929 profile image
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Hi everyone. My story goes like this. It all started with tingling and numbness in the feet in March,17. It progressed to severe pain in both the feet and also numbness in the hands, with pain only in the right hand if it is exposed to too hotness or coldness.I was given a course of vitamin D and Gabapentin for 2 months, which resulted in no improvement. Though, my pain got lowered and was manageble.It was not until July ,18 that I was tested for serum B12 levels which was at 87 and is supposed to be too low. I was immediately put on Methycobal injections(Once daily for 15 days, once weekly for 12 weeks and once per month then on). It's been 2 and half months now, I see no improvement in my symptoms. The numbness in feet is still there and also the pain. Can someone please help me understand if B12 supplements take time to work or I was diagnosed late and couldn't do anything now. I feel miserable and very low inside. I am 30 years old and unable to cope up with this. I am at a prime stage in both my professional and personal life. I don't want to give up on this life, but, my fight is going no where.

Sorry for the long post. Hope you'll understand.

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clivealive profile image
clivealiveForum Support

Hi Kish2929 are you in the U.K?

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

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 and your B12 levels were "bumping along the bottom" of the range.

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, or infections such as h-pylori 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.

Can you see yourself among any of the above people?

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

KimberinUS profile image
KimberinUS

are you in the us? i ask because your treatment regimen is not what they usually offer in the UK. And because if you are in the US it seems they test b12 but not folate (likely because so much of our food is fortified) or full iron panel.

These 2 things at a minimum need testing.

additionally, have you been retested for vitamin D? mine was low (20) and stayed low (39) even though i was taking 5000 iu of D daily for 16 months. It was not until i started taking magnesium that my D raised significantly.

please post your blood test results and ranges so that we may offer some suggestions.

Kish2929 profile image
Kish2929 in reply to KimberinUS

Hi, am from India and I have not been tested for D vit recently. It was at 10 in March, 17. And, have you also been treated for neurological symptoms?

Gambit62 profile image
Gambit62Administrator in reply to Kish2929

symptoms can be caused by the effect of deficiency on a number of systems. If you have neurological damage it is very slow to heal - months and even years

not everyone finds that methylcobalamin works well for them - it may be worth asking your doctor if you could try hydroxo or cyanocobalamin and see if they work better for you. Methyl does nothing for my moods but hydroxo, or adding in a little adenosyl sublingually works well on the mood.

Sorry, no precise answers when it comes to B12

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