B12: Hi. I'm totally new to this site... - Pernicious Anaemi...

Pernicious Anaemia Society
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B12

New1235
New1235

Hi. I'm totally new to this site but hoping to get some help. About 3 weeks ago I started to wake in the night with pins and needles in my arms. I didn't think anything of it and just assumed I'd slept funny. Last week I was sent home from work because my left arm had extreme pins and needles which spread into my face and I also struggled to get some sentences out. I went to the doctor who has ordered a urgent mri (tomorrow) and an appointment with a neurologist. Blood tests were also done which have come back as me having low bit b12. Now I was told normal levels are 1.91 and mine are 1.70. I'm confused by this all my research is in different numbers to those above. My doc claims that my levels aren't super low but they are running tests to check if my antibodies are attacking my b12. I feel so poorly (arm is forever tingly and I have shooting pains, I'm exhausted, memory is rubbish) but my doc won't give me anything until I have my results which won'tbe until the end of the week. I sobbed on the phone to the doc earlier but he says there's nothing he can do. I've read so much about permanent damage the longer it goes on and so I'm worried. Any advice?? I've never felt so poorly. Thank you

4 Replies
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clivealive
clivealiveForum Support

Hi New1235 I'm sorry to read that you are feeling so unwell and I too am a little confused by your "low B12" am just wondering if a decimal point has crept in there somehow.

With you symptoms your doctor needn't wait for the results of further tests for The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Do you know whether your Folate level has been tested? Some symptoms of a deficiency in that are similar to those of B12.

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

I suggest you try to make an urgent appointment, make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

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.

New1235
New1235
in reply to clivealive

Thank you for the thorough response. Thinking that I might need to ring and check what my levels actually are.

I have suffered with tiredness for a long time (Just put it down to my job as a teacher) and then the pins and needles at night started and now the pins and needles in my arm have been constant for a week and I'm totally exhausted. 3 weeks or so ago I totally forgot what year we were in and had to check my phone. Again, I just put this down to tiredness but it obviously links with the symptoms of b12 deficiency. I'm hoping that my results will be back in by the end of the week but worried they won't show anything and then I will have to suffer more and more. The doctor has told me to rest up whilst we wait for my results but I'm a single parent during the week (husband works away) to a 4 year old boy and so this isn't totally possible. Finding it hard to get the doc to take this all seriously and he's adamant that i have to wait.

clivealive
clivealiveForum Support
in reply to New1235

It would be a good idea to try to find the cause of your low B12.

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"?

If it's any consolation I was 13 years between gastric surgery and the eventual diagnosis of P.A 46 years ago and at that time I was like a walking Zombie and given just "two years to live" - unless - I either ate raw liver three times a day or had B12 injections for the rest of my life - I'm now 77 years of age and still "clivealive".

P.S. I opted for the injections :)

Hi New1235. It is actually prudent to wait for the results of your testing before starting an aggressive treatment such as injections. Starting injections on a patient who does not have an absorption issue (B12 deficiency can also be triggered by diet) can create bigger issues in the form of a "functional" B12 deficiency that becomes even more difficult to treat. Maybe try some 1,000 MCG Sublingual Tablets in the meantime until the cause of your deficiency is determined. They are available at the pharmacy.

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