Pernicious Anaemia Society

Low b12 seeking private injections - how often?

NHS B12 Serum Test results: 202 ng/L [Reference Range 197.0 - 771.0]

Private Lab Active b12: 21.1 pmol/l [reference range: 25-165 pmol/l]

Significant symptoms: daily nausea, loss appetite, twitching eye lids dizziness/vertigo severe; tingling, some tinnitus

Decided to go to Private Clinic to get b12 jab.

Q: How often will I need them? They are very expensive - £75 a time! Could I try one - see if I feel better then consider self-injections?

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Should have added that NHS has refused b12 injections as I am JUST in normal range! Very frustrating! My symptoms are so real if hard to believe it is all b12. Really?

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Have a look at the BSH guidelines below:

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

especially note 4 In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment.

You'll also need to know what your Folate level is.

Your doctor should be treating your neurological symptoms instead of looking at the computer screen.

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You could try asking if they are prepared to give you a theraputic trial dose to see if it makes any difference or improvement with your symptoms. You are afterall only just above the cut off limit and in all honesty your gp should be treating symptoms not numbers.

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I agree £75 is horribly expensive . You know that if you get no help from your GP , you can self-inject at a cost of about £1 a time if you buy in bulk . You would get help here if you decide to go down that route . But yes , if you can afford it , why not try a private injection? Trouble is that one injection will not be enough to see a result . You need loading doses to start - 6 injections over 2 weeks. Then maintenance injections ( NHS would give one injection every 3 months or every 2 months if you have neurological symptoms ) But if you self-inject you have complete control , and can inject when you have the need . I have to self inject . I was very very scared at first , but after2 years , I have got the procedure down to a "T" ! Totally painless and quick (5 minutes) BUT , I would only go down the S.I. route if you are convinced that your low B12 is not diet related i. e. You have enough B12 food in your diet - meat , fish , dairy eggs . . You also need plenty of folate (B9) that works with B12 ( very important ) Your Doctor should have told you about diet . If it is diet related you can take B12 orally . Other causes of low B12 are - Metformin and PPI medications . Also , very rare, infestation of fish tape worm . I know this because an Italian friend had this happen to her . All in all ,dear Cb1895, don't forget you have friends here . So come back to us when you need help . Very best wishes .

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Hi,

"NHS has refused b12 injections as I am JUST in normal range!"

This flowchart from BSH Cobalamin and Folate Guidelines makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA (Intrinsic Factor antibody) test and start initial B12 treatment. This applies whether B12 is low or within range.

stichtingb12tekort.nl/weten...

I suspect your GP may not be aware of these guidelines. I gave a copy to my GPs.

Have you had an IFA test?

It can help to diagnose PA but is not always reliable and it is possible to still have PA eevn if result of IFA test is negative (called Antibody Negative PA).

Are you symptomatic for B12 deficiency?

I gave my GPs a copy of PAS checklist with all my symptoms ticked plus added others not on list.

pernicious-anaemia-society.... see PAS checklist

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk factors for PA and B12 deficiency

Do you have any risk factors?

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

BMJ b12 article

bmj.com/content/349/bmj.g5226

Article emphasises the need to treat patients symptomatic for B12 deficiency even if blood tests do not show an obvious deficiency in order to prevent neurological damage.

I'm sure UK GPs trust the BMJ (British Medical Journal).

UK NEQAS B12 Alert

Emphasises that treatment should not be delayed in someone who is symptomatic but has normal range B12.

Link to NEQAS B12 Alert in point 5 of following link

b12deficiency.info/b12-writ...

Above link is about writing letters to GP about B12 deficiency. Point 5 is about being symptomatic with normal range B12, point 3 is about being refused diagnostic tests, point 1 is about undertreatment of B12 deficiency where there are neurological symptoms.

Person who runs B12 deficiency Info website can be contacted by e-mail. Details on website.

Unhappy with treatment?

CAB

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and treatment.

hdapatientcaretrust.com/

PAS (Pernicious Anaemia Society)

PAS are helpful and sympathetic and can pass on useful information about PA. In some cases they can intervene on behalf of their members but I think this may just be people with a confirmed diagnosis of PA.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone so messages can be left

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Book is up to date with current UK B12 guidelines. I gave a copy of above book to my GPs.

I found another of his books "Living with Pernicious Anaemia and Vitamin B12 Deficiency" useful as I could recognise aspects of my experience in the case studies.

"Could it Be B12" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 issues with lots of case studies.

I am not medically trained, just someone who has struggled to get a diagnosis.

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"I'm sure UK GPs trust the BMJ (British Medical Journal)." !

"We don't do that here" - reply by my GP after being shown NHS guidelines treatment for B12 deficiency.

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