B12
My b12 level is 68. My doctor has pr... - Pernicious Anaemi...
My b12 level is 68. My doctor has prescribed 4 weekly shots and to be retested. It’s been steadily decreasing for two years. Suggestions?
Written by
Labg501
To view profiles and participate in discussions please or .
Read more about...
6 Replies
•
clivealiveForum Support
Hi Labg501 are you in the U.K?
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
Do you have any of the above symptoms? If you do and are in the U.K make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and continue on the 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...
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.
Your doctor should also try and find the cause for your 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 you see yourself in any of the above "People"?
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 well and bid you goodnight.
My GP also gave me four injections a week apart and then one every three months. I did write to her and ask why I wasn't being treated in line with the guidelines but 'they're only guidelines' and she says this regime is the one she's had most success with. I eventually gave up banging my head against a brick wall and took it into my own hands. I now self inject.
I am concerned about the retesting. Serum B12 testing doesn't show how much of the B12 in the blood is active, and it cannot be used as an accurate measurement after injections have been given.
Hi,
My experience is that B12 deficiency is not as well-understood as it could be by some doctors so in my personal opinion it pays to do some B12 homework.
If you're in UK, I'd suggest reading all the following UK B12 articles/documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
BMJ B12 article
BNF
bnf.nice.org.uk/drug/hydrox...
NICE CKS
cks.nice.org.uk/anaemia-b12...
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society) based in Wales, UK.
"Living With Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
" Could It Be B12?: An Epidemic of Misdiagnoses " by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
Has your doctor told you what they think is causing your low B12?
Intrinsic Factor Antibody (IFA) test
Have you been given an Intrinsic Factor Antibody (IFA) test? This can help to diagnose PA (Pernicious Anaemia) but IFA test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range. See BSH guidelines and flowchart above.
Risk factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
PAS (Pernicious Anaemia Society)
PAS is based in Wales, UK and offers support and info about PA.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
If you're in USA, the website B12 Awareness may be of interest.
Unhappy with treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Access to Medical Records (England)
nhs.uk/NHSEngland/thenhs/re...
nhs.uk/chq/pages/1309.aspx?...
More B12 info in pinned posts on this forum. I've written some more detailed replies recently, may be worth searching for them on the forum.
I am not medically trained.
I suggest you keep a journal of your symptoms and take the list and someone else with you to your next appointment. A b12 deficient brain has trouble defending itself with a poorly informed doctor. A partner or friend will help advocate for you. Doctors are less inclined to bully you if there is a witness.
