Pernicious Anaemia Society
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Doctor says no more injections necessary!

Am worried as my husband's GP has said his B12 is now OK and he does not need any more jabs. I have written on here before about his situation and she seems to be going against all the recommendations that after being diagnosed deficient in B12, unless it is diet related, there is no point doing repeated blood tests. He has been having 3 monthly injections and has been so much better. He told her he was still getting the pins and needles but she said was probably something else. He says he has to trust in his doctor but I do not want to see him going back to how he was.

It was the doctor who called him in after he had the initial blood test followed by 2 more and who said he must have the jabs in the first place. He has said he will wait 3 months and then go for another blood test to see if his levels are still normal. Is this likely? I have written previously about how ill he was prior to being diagnosed and the huge difference after he had the treatment.

From all I've learned on here, she is not following the NIC guidelines, am I correct or can it get better on it's own.

7 Replies

You are correct Christina - GP should be following the BNF/BCSH guidelines for treatment of neurological symptoms (which you're already are aware of as pins & needles) "until no further improvement". This is also echoed in the latest BMJ research document (page 4) :

"How is response to treatment assessed?" ....

...."Homocysteine or methylmalonic acid should normalise during the first week of treatment. Failure to do so suggests an incorrect diagnosis, unless renal failure or other causes of increases in the metabolites coexist. Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not normally required."


"Parenteral treatment"

".....If there are neurological symptoms then 1000 μg intramuscularly on alternate days should be continued for up to three weeks or until there is no further improvement.4 25 In irreversible cases, for example, pernicious anaemia, the treatment should be continued for life."


It might help to write or print off for your GP? I hope you're able to get better treatment.


Many thanks for your reply. My husband has not had a job for 3 months now but his B12 levels are normal according to his doctor, would the jab not have worn off by now and his B12 be low again if he had PA?

Sorry, am a bit confused by this all


It is confusing Christina - the reason for not measuring the blood levels after injections have begun is that they only show what is in the blood and not whether the B12 is absorbed into tissues. So measuring serum levels once injections have started is usually irrelevant. Non absorption can be caused by PA, Crohns, coeliac, as well as other autoimmune issues from 'leaky gut', h/pylori, etc. Another cause could be lack of hydrochloric acid, which diminishes as we age....

Again, page 4 of BMJ document might galvanise GP into doing more tests, although these are not always reliable, as Martyn Hooper, Chairman of the PAS discovered.

"Identifying the cause of vitamin B12 deficiency:

Once a diagnosis of vitamin B deficiency is identified, history taking and examination are important (see fig 3). If there is no obvious dietary lack of vitamin B12 or malabsorption, tests for intrinsic factor and antiparietal cell antibodies should be performed to exclude pernicious anaemia."


If the

Dr thinks the pins and needles are something else then surely they should be investigating exactly what is causing them! It is a neuro symptom!


Exactly! My husband has very rarely ever been to the doctors until the last year. It was not only me who had noticed his mood swings, forgetfulness etc. but others as well. This happened over a period of around 3 years and slowly got worse until he was told about his low B12. He is normally a happy go lucky person and it was horrible to see him in the depressed state he was in. He has never suffered previously with any nervous issues and I was relieved as it seemed we had found the answer at last and the improvement was dramatic when he had the jabs. At the moment he is OK but if I see him going downhill I will drag him to the doctors myself and will have a lot of questions.


It is extremely unlikely that this will self-resolve. You are correct in that the doctor is not following NICE guidelines. That is really bad as the NICE guidelines are inadequate in the first place. If your husband has so much faith in the doctor, the resolution to this cannot be found here. It is a belief/faith issue. The question is: how bad will he get and how much damage will be done before he realises that doctors are human, fallible and misinformed about B12 deficiency management? If the guidelines are not followed and your husband suffers damage as a result, you may have a case for medical malpractice. (It will be cold-comfort for your husband though)

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can the PAS suggest any useful info to read?


01656 769 717


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