B12 Injections stopped: I was diagnosed... - Pernicious Anaemi...

Pernicious Anaemia Society

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B12 Injections stopped

Nibbles72 profile image

I was diagnosed with pernicious anemia in my 20s just after my sister and have been receiving B12 injections for over 25 years now every three months. My GP nurse checked my levels during a routine blood test as my folic acid levels were very low and I was put in a 3 month course of tablets. The results came back which said my B12 levels were sitting at 650 and said it was normal. I was told I couldn't have any more injections until I was tested to see if I had the instrinsic factor which came back negative and I was then told I didn't need the injections anymore and that I was cured. My symptoms are bad just now constantly feeling tired, bad vision, very forgetful and easily exhausted. I have now not had an injection since last September. What can I do?

14 Replies

You must write a letter to your surgery . You have P.A. and MUST have injections for life . You must tell your G.P. that your symptoms are returning and your injections must be reinstated . Send copies to the surgery manager your M.P. etc . It’s absolutely disgraceful . Intrinsic Factor tests are notoriously misleading . About 50 % of P.A. patients get negative results . .

Gambit62 profile image
Gambit62Administrator

In writing to GP refer them to the BCSH guidance on diagnosis and treatment of folate and cobalamin disorders which can be found here - though there is a slight discordance between them and the BNF which now states 2-3months as the frequency for injections where there is no neurological involvement

onlinelibrary.wiley.com/doi...

Specific points to note:

a) IFAB test is not very specific with the result that normal levels set result in false negatives around 50% of the time. False positives are much less likely so positive is good confirmation of PA but a negative is a long way from ruling out PA. The standards even talk about IFAB negative PA

b) if patient has a folate deficiency then B12 malabsorption should be investigated and treated with injections for life

c) testing of B12 levels post loading shots isn't recommended, ie treatment should not be based on B12 levels post loading shots but should be based on symptoms.

You should also refer the GP to the current guidance on treating B12 deficiency during the pandemic - it distinguishes between dietary and non-dietary deficiency causes. It also states that treatment of non-dietary deficiency should be reviewed with the patient. It may be possible to use high dose oral and this may be effective if injections are not possible - but that patients should refer back to their GP if this is being tried and symptoms return.

b-s-h.org.uk/media/18275/bs...

I received a letter via email last week from my GP saying that he had looked through my records and that I needed to take oral B12 instead of having injections. I replied saying that I was diagnosed in 1977 having had the Schilling test which is still considered the most accurate form of diagnosis and was only withdrawn for financial reasons. He replied with an apology saying that his records didn't go back that far. He has reinstated my injections and made a note on my records to prevent this problem arising in the future. This made me wonder if there is a cohort of people who were diagnosed years ago and whose records no longer show the original results which would possibly be more useful in making these decisions. I hope you can resolve your issues

Nackapan profile image
Nackapan in reply to 041051

Thank goodness for good record keeping!

No good if the gps records dont go back that far though.

I'm amazed that clear diagnoses ar not retained on present records .

Less importantly my blood group has been lost to the archives ....crazy.

I worked in 'system one' when it was introduced to he NHS. We had great hope's for its efficiency.Instant access to every health professional . But then it had to be 'shared' patient permission seemed. Data protect. Only parts revealed to certain health professional.

Then Gps could opt out . So lots of different systems in use . They were then not compatable. So for example a and e coukd get access to present medications ect if the patient unconscious!

I think it got messy. The Spine(as its called) on the i.t system should've been transferred to what ever was being used. As the title infers. Hodson viral o formation.

The problems begin as IT experts disdnt understand clinical need of access.

I think this is where alot of vital details as in your shilling test was archived but not transferred onto 'I.T'

We all need to keep our own records and memory!! So glad you havent had too long a battle and have your I jections back.

041051 profile image
041051 in reply to Nackapan

Apparently, all the paper records for this area are stored a few miles from where I live but I doubt that anyone would know where to find a specific set. I was lucky that my GP believed me because I'm sure there are some who would doubt a patients word. My concern is that if a GP is asked to clarify an issue (for the DWP for instance) how can he do this if he doesn't have access to paperwork for things that were diagnosed years ago. Computerising our records seemed like such a good idea but it certainly has it's flaws

Nackapan profile image
Nackapan in reply to 041051

They can be found but an enormous time consuming g task. I expect the Gp will just update your medical record. There will enough evidence there.

Their primary duty is "to do no harm" - if you have symptoms they should listen. Good luck.

Cherylclaire profile image
CherylclaireForum Support

There is no cure for pernicious anaemia.

There wasn't when you were diagnosed over 25 years ago, and there still isn't. That is why you need lifelong injections, to give you the B12 that your body is unable to access for itself from food or tablets. The B12 injections aren't a cure, they just prevent you from getting worse.

There is no reason to test serum B12 once injections have begun. All that will tell them is that the injected B12 is working- which is why you have been alive for the last 25 years !

Your symptoms have returned : your injections need to continue. I expect you will need to start back on reloading after all this time.

How you have managed since September, I don't know.

I cannot understand why anyone would tell you that you have been cured of PA. It simply isn't possible.

Please write a letter to your surgery as soon as possible.

Hi Cherylclaire, I was diagnosed with pernicious anaemia in 2005, when I was diagnosed with Chronic Discoid Lupus Erythematosus. I was given B12 injections for a few months and then I was told my B12 was fine. A few years later my folate was low and I was prescribed a course of folic acid tablets but I have no further treatment since then. Should I still be having cobalamin injections? Sorry to hijack your post Nibbles72 your post caught my eye. I hope your GP is able to help you.

Cherylclaire profile image
CherylclaireForum Support in reply to 2jayjacqui

I have not got any medical training.

Pernicious anaemia is an autoimmune condition, as is chronic discoid lupus erythematosus, and people who suffer from one autoimmune condition quite often have more than one.

Is there a family history of autoimmune conditions, including PA ?

Do you have B12 and folate levels checked regularly ? Do you take any supplements ?

Do you have any B12 deficiency symptoms currently ?

There are a wide range of symptoms but hard to find a comprehensive list. I'd look at the list on the Pernicious Anaemia Society website.

You are on this forum and have read the above post from Nibbles72 for a reason, after all, so I'm assuming you are experiencing some unresolved problems.

If I were you, I would ask this of your GP:

1) How was pernicious anaemia originally diagnosed in 2005 ? (What test/s and results- and get a copy !!)

2) How (on Earth) was it decided that you no longer have it ? (What test/s were used?)

This information should all still be on your record, and worth reviewing.

I don't know the frequency of the injections you were given, but if you were given B12 injections for a few months, likely your B12 levels would be fine - but this does not mean that you can continue to be fine indefinitely. This is just measuring the injected B12, and not a reason to stop an effective treatment for an incurable condition.

I hope you are fine. I hope you were wrongly diagnosed originally. But if you look at posts here, you will see that a diagnosis of pernicious anaemia is quite difficult to get. Also appears lately to be difficult to keep - which is why I would advise anyone to get a printout of their PA diagnosis.

Hi Cherylclaire, my apologies for not getting back to you but I was unwell and wasn't online. My Mum was diagnosed with Pernicious Anaemia and my sister was diagnosed with Rheumatoid Arthritis. My Father was diagnosed with Polymorphic Light Eruption, which seems to be related to Chronic Discoid Lupus Erythematosus. I have a few autoimmune conditons.

My bloods are not checked regularly but after speaking to my GP yesterday, regarding painful joints, I've been advised to have my bloods checked.

I do not take any supplements for B12 and at the moment, don't have any deficiency symptoms that I'm aware of.

In 2005, I had a skin biopsy taken and was diagnosed with CDLE. I was then referred to Rheumatology to the doctor dealing with Lupus. He ran a battery of tests and informed me that I had Pernicious Anaemia. I was discharged from Rheumatology, as I didn't have Systemic Lupus and I don't have a copy of the blood results. I've no idea why my GP decided I didn't have PA any more but only had a short course of injections. I didn't realise PA was an incurable condition. As I've not been under Rheumatology for about 14 years I don't know if I'd be able to get a printout of how PA was diagnosed.

Thanks very much for replying to me.

Cherylclaire profile image
CherylclaireForum Support in reply to 2jayjacqui

Your GP must have had a feedback report from the rheumatologist - which should be on your record. These would include why/how the rheumatologist diagnosed Pernicious Anaemia -especially since you were sent because of suspected CDLE.

Worth asking for.

Does your mum get regular B12 injections ?

Plenty of family history of autoimmune conditions -and often people have more than one, like you, to contend with. This can make diagnosis and treatment complicated, but also difficult for you to determine what symptoms belong to what condition.

Let's hope your GP can help- and is willing to revisit your initial diagnosis of PA which could have included suggested frequency of B12 injections (?) .

My Mum was having regular B12 injections up until she passed away. I'll certainly speak to my GP regarding my PA diagnosis and the suggested frequency of B12 injections, as well as how it was decided that I no longer needed the injections. Thanks for your help.

Cherylclaire profile image
CherylclaireForum Support in reply to 2jayjacqui

I'm sorry to hear that your mum is not with you now.

I really hope that you get the help you need from your GP.

There is always someone here to talk it through with - I know it helped me a lot to know that. Best wishes.

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