Do I or don't i: My results came back... - Pernicious Anaemi...

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Do I or don't i

1lolabear profile image
7 Replies

My results came back for my vit b12 blood test. My GP informs me it is in the normal range of 230, so will not prescribe injections. On this information would someone advise me if I should self inject. I have numerous symptoms

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LtAngua52 profile image
LtAngua52

Anything under 500 is deficient. A level of about 1000 at least is preferable to prevent both neurological and cognitive impairment. What symptoms do you have?

You can try showing your GP the information all about the flawed b12 test as well as recommended treatment. Look at the following sites bb12d.org and b12awareness.org and b12d.info.org for information as well as documents from the Pernicious Anaemia Society website. The British committee on standards in haematology also produce guidelines that your doctor should have read. He may then change his mind or like mine refer me to a haematologist who I am yet to see.

It's worth giving him the opportunity to learn and treat you before you jump in to self injecting. It's a hassle trying to get it as well as expensive!

If he still won't do it after all the information then fair enough. You need to know your folate level too as it helps b12 absorption. If you end up needing to self medicate then post again and members can advise you. I hope your doctor changes his mind and you don't need to buy it yourself. :-)

The last one should read b12deficiency.info

1lolabear profile image
1lolabear in reply toLtAngua52

Hi , thanks for your response.

The symptoms I have are foggy, aching joints, no concentration, absolutely exhausted etc ...

Kells35 profile image
Kells35

My dr said my 152 was normal!! I have been feeling ill for years and all I can say it gets worse so If your dr is not helping I would say go for it! My hands are so numb/tingling I can hardly move them and the pains in my chest are so scary! Go back and see your dr! I just ordered some injections as my dr is rude and I think he hates me Hahahaha

clivealive profile image
clivealiveForum Support

Hi 1lolabear as LtAngua52 indicates your B12 level @230 is on the low side.

I am not a medically qualified person but would like to know more about why you might be B12 deficient.

On page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-

Who’s at greatest risk for B12 Deficiency?

Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. 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.

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

Can you identify yourself in any of the above?

On page 11 in of the same the book it says

However, it appears that these markers demonstrate B12 deficiency primarily in patients whose serum B12 is in the "gray zone" (a serum B12 result between 200 pg/ml and 450 pg/ml). We believe that the "normal" B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/ml

At this time, we believe normal serum B12 levels should be greater than 550 pg/ml. For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml.

The book is well worth while the purchase as is Martyn Cooper's "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency" both available via Amazon.

The few symptoms you describe - foggy, aching joints, no concentration, absolutely exhausted etc ... are similar to some of those found with B12 deficiency and P.A. but I've no doubt your doctor will try to find "other causes". If so, suggest that he puts you on a "trial run" of B12 (hydroxocobalamin) injections to see if your symptoms improve. It is a relatively cheap medication and if they do, your doctor will have saved lots of money by not doing other expensive tests, he will be better educated and you will get to feel better a lot sooner.

Treatment of cobalamin deficiency

Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks.

The BNF advises that patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment

If you do succeed in getting the B12 injections ensure that your Folate level is good as the two work together.

I wish you well for the future.

1lolabear profile image
1lolabear in reply toclivealive

Than you

1lolabear profile image
1lolabear in reply toclivealive

Thank you

Sleepybunny profile image
Sleepybunny

What symptoms do you have?

See Symptoms Lists below

b12deficiency.info/signs-an...

pernicious-anaemia-society....

See PAS symptoms Checklist

Recent UK documents make it clear that people who are symptomatic for B12 deficiency but whose B12 results are normal range should be treated to prevent neurological damage.

Has your GP seen the following?

1)ukneqas-haematinics.org.uk/...

2)bmj.com/content/349/bmj.g5226

3) Google "BCSH Cobalamin and Folate Guidelines"

fbirder has a useful summary of mainly UK B12 documents. if you search his posts you should find a link to summary.

I did eventually start to treat myself but only after I had exhausted all possibilities of getting NHS treatment.

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