Pernicious Anaemia Society
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Let down by GP

Hi. I'm completely new to all this. It's been quite a shock TBH. I had a B12 reading of 113. Doc is to give me three injections a week for next two weeks and then he says once every three months. I can't remember what the folic acid reading was but he's given me 5mg tablets to take for four months. Will I have to get the injections and take the tablets forever? Are there nasty side effects from the injections? When will I start to feel less exhausted?

I'm presuming I have pernicious anaemia as I eat a lot of meat and diary products and the doc said it was unusual for a non-veggie/non-vegan to have B12 deficiency. Is this correct?

Background: I'm 49. I started feeling tired about ten years ago. But I put it down to side effects of the SSRIs I had been taking for ten years (as well as symptom of depression). It got steadily worse. About six years ago I went to the doc and said I wanted to change my meds as I was feeling tired all the time and thought maybe switching would help. Anyway, I was switched from paroxetine to citalopram. It didn't make any real difference. I thought, well it's another SSRI drug so not that surprising - I'd just have to put up with it. What annoys me is that the doc never once suggested I get a blood test. Surely when I asked to switch meds, specifically due to tiredness, they should have sent me for blood tests to see if it was something other than the SSRIs. In fact I'm pretty sure the only reason I was told to get blood test (first in 11 years as patient at that surgery) was because the surgery received a bad CQC inspection report a while back (put on special measures) and I was called in for a routine check up (also first time this had happened) and the doc said I looked very pale and could be anaemic. It's annoying when I think what the last six years has been like in terms of tiredness. I could sleep for hours, get up and without doing that much feel really tired again about two hours later, and even fall back to sleep.

I get the feeling I'm at the beginning of a quite a steep learning curve given the posts I've read on here. It all seems like a bit of minefield. Although it was a shock to get this diagnosis, as I've never had any health problems apart from depression/anxiety, I am relieved as it means I might not spend the rest of my life completely exhausted.

14 Replies

Hi Orpheusss For a start -please stop worrying - you are now receiving treatment for your B12 and Folate deficiencies regardless as to whether or not you have a "Vitamin B12 Deficiency" or "Pernicious Anaemia" which may be yet need to be determined by further tests on your Intrinsic Factor - if this has not already been carried out. The treatment for both conditions is virtually the same.

Long term use of antidepressants can have an adverse affect on B12 and Folate levels and it may be that this is one of the reasons for your deficiencies - that should be down to your doctor to determine.

We store a few years of B12 in our liver and this is normally "topped up" from our daily diet. If for some reason we fail to process the B12 through our stomach then, like a car with a faulty alternator, (and the battery runs down) we fail to get "re-charged".

The injections are not painful and get the B12 directly into the bloodstream. Some symptoms may improve quickly whereas some neurological ones may even appear to get worse as the B12 starts to repair any damage done to the nerve endings in your body. Again, this is not something to worry about as it is quite normal.

Vitamin B12 and Folate help your iron to make red blood cells. You are on a high dose of Folate and you will need to be tested when you finish the course in four months time.

As to how long you are on B12 injections - that will depend on whether or not you are definitely diagnosed with P.A. or maybe even if you can wean yourself off the SSRIs - if they are the cause of your B12 deficiency.

I am not a medically trained person but I have had P.A for more than 45 years and I'm still "clivealive" at over 75.

I wish you well


That is a very good answer and chimes with my own experience too.


Thanks Clive. That has given me more clarity about this.



possible that your depression was actually the first sign that you were having problems absorbing B12 and the tiredness was the second.

unfortunately GPs and even a lot of specialist medics know very little about B12 and B12 deficiency and its causes. PA is one potential absorption problem - there are a lot of others - you will be on injections for life unless the cause is a treatable absorption problem - which generally boils down to a h pylori infection.

The SSRIs may be affecting your folate levels. clivealive - I'm not aware that long term use of ADs has an affect on B12 - certainly true that SSRIs can have an affect on folate levels and for some people it is actually quite quick to develop. However, more likely with the folate that the same problem that is stopping you absorbing B12 is having an effect on other vitamins and minerals.

To be honest it would be a good idea to get hold of the test results in full - and possibly any previous blood work. Quite likely that you are showing signs of macrocytosis - enlarged rounder red blood cells - which can be caused by both folate and B12 deficiencies - this takes a few months to clear because healthy new red blood cells are only produced as old ones 'die' and the average 'life' of a red blood cell is 4 months.

Some people feel better quickly others find that it takes months before they feel better - it depends on which of the many processes that use B12 in the body - is causing the symptoms and how much damage has been done whilst you haven't had enough B12 at the cell level.

Other absorption problems include: coeliacs, crohn's, low stomach acidity (often mistaken for high stomach acidity as the symptoms are basically the same), various drug interactions.

I had 40+ years of anxiety and depression before being told that I had low B12 - I don't know if the cause is actually PA or not but it is permanent - my stomach acidity is definitely low - different causes have different consequences so it is a good idea to try and rule out other causes but as the IFA test for PA is notoriously prone to false negatives actually ruling out PA as a cause can be very difficult.


Thanks gambit. I'd did wean off ADs a few years ago and felt lot better physically (after horrendous withdrawal symptoms) but I had to go back on them after about a year. It sounds plausible that long term AD use has led to this deficiency of B12.

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First, the B12 injections will only do good. There don't seem to be any adverse side effects at all.

I would print off a tick list of B12 deficiency symptoms, go through it and show it to your GP when completed.

11 years without a blood test is downright negligent. I'd be speaking to a lawyer but then I'm a very bad tempered person these days ! ( B12 injections helped me enormously but now diagnosed with fibromyalgia which would make a saint bad tempered !)

Start with the tick list. Read the guidelines re B12 loading injections until no further improvement in neurological symptoms and tell your GP the treatment you need.


Thanks. I must admit the thought of speaking to a lawyer has certainly crossed my mind.

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I agree with hollyberry. Your B12 is very low and obviously has been for a long while. You should be treated as outlined in the BNF and other research and guidelines, "every other day until no further improvement".

You'll see from the Dutch results in the pinned posts that early and adequate treatment is vital to a good outcome.

Very best wishes for better treatment MickPA

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Thanks Polaris.


Hi Mick,

Are you in UK? I'm asking as pattern of B12 treatment varies from country to country.

Risk factors for PA and B12 deficiency


B12 Deficiency Symptoms lists


I gave a copy of PAS symptoms checklist to my GPs with all my symptoms ticked and I added any not on list. I made sure I included any neuro symptoms.

"Doc is to give me three injections a week for next two weeks and then he says once every three months."

The pattern of treatment above is the standard UK treatment for B12 deficiency without neurological symptoms.

If you have neurological symptoms eg tinnitus, pins and needles, tingling, memory problems, balance issues plus many other possible neuro symptoms, it's vital that you get the correct levels of treatment.

In Uk , people with B12 deficiency with neuro symptoms are supposed to have loading injections every other day for as long as symptoms continue to get better. After that they are supposed to receive injections every 2 months.

Undertreatment of B12 deficiency, whatever the original cause, can have severe consequences.

UK B12 treatment

Details can be found in

1) BNF (British National Formulary) Chapter 9 Section 1.2

2) BSH Cobalamin and Folate Guidelines

Flowchart from BSH Cobalamin and Folate Guidelines.

Flowchart outlines when PA can be diagnosed in UK.

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Book is up to date with UK B12 guidelines.

"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 book about B12 deficiency with lots of case studies.

Unhappy with treatment (UK info)

Link about writing letters to GP about B12 deficiency

CAB (Citizens' Advice Bureau)

HDA patient care trust

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

Access to medical records

It can be very illuminating to see what has been written in the past and to see past blood test results.

B12 and Mental Health

You mention being treated for depression. B12 deficiency can present as mental health issues.

B12 blogs

There is also an interesting blog about B12 issues on "B12 deficiency Info" website.

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

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Yes, I'm in the UK. Thanks for all that info and links. I'm going to do the symptoms check before first injection next Monday. When I got the results the other day I wasn't asked what symptoms I had.


My uncle has been having B12 injections for years, he is 94 years old.


Wow! Could his longevity be partly down to having the injections?


Hi it's entirely possible. My adopted mother lived to be 99 years of age, that after having three ops for cancer in her 60/70's. There are various things now given to help people live a longer life, statins, PB pills etc.etc. There is hope for us all.


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