B12 injections

[Nibbles72]

Update on my B12 injections. I called my doctor on Thursday and spoke to him on a consultation over the phone he said my levels were now normal and I said I have been getting b12 injections for about 25years and they said my instrinsic factor also came back negative. He said he would check back my files to see what original diagnosis was and get back to me. He also said if my symptoms were bad to phone and make an appointment with the nurse in the meantime. I went off the phone called back to get an appointment with the nurse and was told no I explained that the doc said I had to get it and she said that the nurse would need to speak to me first. I am still waiting on that call since Thursday. I phoned back today and was told doc had checked back my notes and that I wasn't tested originally but had pernicious anemia and it was probably only diet related. So I have been getting jags every 3 months for over 25 years for a dietary illness. My version was my b12 levels were so low I was given a prescription sent to the chemist and had to come back and get an injection straight away as they were so low. They told me I didn't need any test as they didn't do them anymore. I have been getting b12 injections since over all these years. Something doesn't sound right to me. What else can I do I have been feeling horrendous and I am getting nowhere fast I last had an injection in August last year xxx

[clivealive Forum Support]

Hi Nibbles72 that's a bit of a mystery.

Do you have any other of the "conditions" listed below that may have caused the B12 deficiency in the first place 25 years ago?

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), Pancreatic insufficiency, 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.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.

[Nibbles72 in reply to clivealive]

Only sister diagnosed about a month before me. I have vitiligo xxx

[clivealive Forum Support in reply to Nibbles72]

That may be the cause - is vitiligo in your medical notes?

nhs.uk/conditions/vitamin-b...

I am not a medically trained person but have had P.A. for more than 48 years.

I wish you well and bid you goodnight from the U.K.

[Sleepybunny]

Hi,

Sorry but only got time for a short reply which I've copied from my reply on another thread.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms.

Point 5 is about being symptomatic for B12 deficiency with normal range serum B12.

May be more effective to put queries about treatment into a brief as possible, polite written letter.

My understanding is that letters to GPs are supposed to be filed with medical notes so hopefully harder to ignore.

CAB NHS Complaints

citizensadvice.org.uk/healt...

Local MPs/devolved representatives may be worth talking to if unable to access recommended levels of treatment.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

If you have a PA diagnosis or suspect PA, worth joining PAS who can offer support and useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS have a leaflet "Treatment is for Life" only available to PAS members

pernicious-anaemia-society....

also " Testing B12 during Treatment " available to non-members

pernicious-anaemia-society....

Another link about Testing B12 during Treatment.

stichtingb12tekort.nl/engli...

From Dutch B12 website so reference ranges and units may vary from UK.

B12 article from Mayo Clinic (US)

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Support/info also available from websites below.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

B12d.org holds support meetings near Durham, UK

b12d.org/event

Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, more B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs etc.

healthunlocked.com/pasoc/po...

UK forum members have reported problems getting their B12 jabs during pandemic eg injections have been stopped/delayed/ frequency reduced or swapped for oral tablets.

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.

healthunlocked.com/pasoc/po.....

I am not medically trained.