I was told I had pernicious anaemia earlier this year and I had my first B12 shot a week ago. I've been exhausted and in a high state of anxiety ever since - have others experienced this side effect? Also my forefingers have been inflammed, swollen and sore, I'm not sure if that's possibly connected.
Finally, I've only had the one shot although everything online talks about multiple loading doses. The nurse I saw expected me to be going in everyday, but two different GPs have agreed that it's not necessary. Are the loading doses always necessary? Could the one-off be the reason that I've felt so awful since? I have an appointment with a clinical pharmacist tomorrow, I'd be grateful for any advice on what to say / ask him or her. No one at any stage has actually given me any info about the illness, symptoms, side effects of the shots, etc. I've had to look it all up online.
Thanks!
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jaina890
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Hi jaina890 I assume from the way your P.A is being treated that you are not living in the U.K. where - as you have read elsewhere Vitamin B12 injections are given on alternate days for two weeks or until there is no further improvement in symptoms.
It would seem that your nurse is more aware pf the proper treatment than your doctors and I hope that the "clinical pharmacist" is also more informed.
I am also quite concerned that you were diagnosed "earlier this year" and do not understand why the delay in starting treatment.
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.
Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
As for your "forefingers have been inflamed, swollen and sore," that is a symptom I have not suffered personally.
If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 47 years.
I actually am in the UK, which is why it's been confusing that the GPs have disagreed with everything I have read! The delay was because I was actually just over the threshold (263) so the original GP didn't think I should start yet, but then other GPs said it was only going to get worse and I was clearly having symptoms, so I might as well. Thanks for the advice, will see how it goes today...
I am alarmed that you were diagnosed earlier this year with Pernicious Anaemia , but have not yet received a B12 injection . That is gross negligence on the part of your doctor . Yes loading doses are absolutely necessary. You can find the necessary evidence to download and print out to show your doctors under “Pinned Posts “ on the right -hand side of this site . You need 6 injections over 2 weeks for a loading dose , and then an injection every other day if you have any neurological symptoms , until your symptoms fail to improve.There after a b12 injection every 2 or 3 months .
Please start your treatment ASAP . It’s important ! I’m wondering if you are in the UK ? Best wishes .
Yes, I am in the UK. Treatment was delayed because I was actually just over the threshold (263) back in July when diagnosed, so the original GP didn't think I should start the injections yet. But more recent GPs said it was only going to get worse and as I was having symptoms, I might as well start now. It's impossible to see the same GP twice at my surgery, which doesn't help. Thanks for the advice, I'll take a look at the download you mentioned.
Have a look at the detailed replies I wrote in link below. There are links to B12 websites, UK B12 documents, books about PA and B12 deficiency and other B12 info.
If you've been diagnosed with PA and need help getting recommended levels of treatment, I recommend joining PAS (Pernicious Anaemia Society) and phoning them. They will be able to pass on info that GP will find useful.
I had the first 2 or 3 of my loading doses (one every other day) and felt some negative effects such as increased anxiety and palpitations, tight chest etc.
So I was put on One injection per week by my GP and didn’t feel those effects by doing that.
I continued once a week for about 16 weeks and noticed great improvement so from personal experience I don’t think the loading doses are absolutely necessary as having one injection a week will also continue raising your B12 levels but maybe just at a slightly lower pace then you would if you had 6 loading doses over 2 weeks.
I don’t think it matters, it still works if your body doesn’t agree with the loading doses.
The only thing I couldn’t tell you is if you’ve had some kind of reaction which caused your finger problems.
I would take a break until your fingers are better and then go on once a week and see if that causes the same reaction then at least you could link it to the injection.
If it happens again try a different brand of injections.
I assume you had Hydroxocobalamin if you’re in UK but I believe some people are on cyanococalamim.
I would try the once a week first to rule it out.
As I’m not a medical professional do talk to a doctor about this if he agrees as the worst is you’ll have the same finger reactions if the injection is the cause.
There is also Methycobalamin B12 injections which are not used in this country I think but most people are fine with the Hydroxo and it works just as good.
Bottom line.....6 loading doses are not essential, you can do one a week to achieve same results.
I’ve been self injecting for over 3 years and have read up a lot especially on this site and most of my B12 related problems solved.
I’ve reduced to once every 2 weeks but that’s at a later stage. You will know when your body feels better when to reduce frequency of injections.
You were told that you have PA. Did your GP send you for a blood test for Pernicious Anaemia (intrinsic factor antibody or IFab) then , or just a blood test to determine your serum B12 level ?
Did you also have folate and ferritin levels included in your blood test ? These should be monitored, as clivealive pointed out above. These can be seen as "normal" but can be floundering around at very low-normal levels- which will affect you and does require action. Usually a good vitamin supplement - but do have your levels checked first because folate and ferritin can have ill effects at low and high levels.
It seems strange that the GP would diagnose PA and then leave it untreated for so long.
If I had a PA diagnosis, I would want it to be more than verbal - just as a safeguard, because your GP/s is/are not using any recognisable treatment pattern, and this is (currently) not a curable condition. There are guidelines for the correct management of PA, which wedgewood has explained above.
Not sure about your fingers: don't forget to bring that up with the pharmacist.
If you feel overwhelmed by the lack of NHS information regarding how to help yourself, what to ask for, what to look out for, how you will be treated in the future etc. , there are people here who can help you- not medical professionals, but people who have had PA for a long time and have had to work things out for themselves.
I would also start to record your progress: list your symptoms, and record daily what happens to them in terms of frequency and severity, especially as related to timing of your injections. Hopefully, once treatment is established, you will see improvements -and it may reveal a pattern which can help your GP/s to ensure optimum treatment.
A shame that there is no continuity with GPs at your practice: patient observation really helps them to understand what "better" and "worse" look like for you, especially if some symptoms are easily visible .
We are all different, and this alone makes it difficult for GPs in both diagnosis and treatment. Official guidelines can be both useful and restrictive, depending on your needs. In your case, a good starting point for discussion, I'm thinking.
Thanks everyone for the helpful comments. Have now had loading doses and one very helpful nurse gave me the name of a specific GP at the practice who has the most experience with PA and B12. I am meeting him in the new year.
How often are you going to get B12 jabs now loading jabs have finished?
Do you have any neurological symptoms?
UK recommended treatment for B12 deficiency without neuro symptoms is...
6 B12 loading jabs over 2 weeks followed by a maintenance jab every 2 or 3 months
UK recommended treatment for B12 deficiency WITH neuro symptoms is...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
There is no time limit on how long the every other day jabs can continue if patient has neuro symptoms. If improvement in symptoms continues so should the every other day jabs.
Has your GP got a list of all your symptoms especially all your neuro symptoms?
If you have neuro symptoms and you feel GP is not giving you the recommended level of treatment then GPs can find necessary info in their copy of BNF (British National Formulary) book in Chapter 9 Section 1.2.
If you need to discuss level of treatment with GP, I suggest taking a copy of BNF info with you. See BNF link below.
I suggest reading the following documents before you next see GP.
As well as looking at national guidelines, I suggest tracking down a copy of your local area guidelines for treatment of b12 deficiency. Some of these local area guidelines are years out of date and do not match what is in national guidelines.
The GP who you are going to see in the new year might be interested in the following...
Help for GPs
1) PAS website has section for health professionals. It is free for your GP to join PAS as an associate member.
2) PAS website has section with lots of useful leaflets eg "An Update for Medical Professionals: Diagnosis and Treatment" which you could print off if you join PAS.
3) If you're a PAS member it might be possible to arrange for your GP to speak to Martyn Hooper, chair of PAS but you would need to discuss this with PAS first.
4) I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency"
I would suggest getting proof of your PA diagnosis if possible as may be helpful in future.
Some GP surgeries have access to an online summary of results or sometimes to complete medical records. Details should be on your GP surgery website.
Some forum members have had B12 injections stopped when they saw a new GP and when they challenged this decision have been told there was no record of their PA diagnosis.
If you do not have a confirmed diagnosis of PA it may be worth looking into other causes of B12 deficiency.
2) B12 deficiency due to parasites eg fish tapeworm
If medication kills parasite then B12 absorption may improve.
3) B12 deficiency due to H Pylori infection
Again if medication stops H Pylori infection then absorption may improve and b12 jabs may not be needed.
However severe gut damage may mean B12 injections need to be lifelong.
"Treatment was delayed because I was actually just over the threshold (263) back in July when diagnosed"
Treatment for PA and B12 deficiency should not be delayed due to the risk of permanent neurological damage. I think some at your surgery have strange ideas.
No excuse in my opinion for not starting treatment immediately as all UK GPs have access to BNF book and a computer.
UK national guidance on B12 deficiency stresses need to treat people who are symptomatic for B12 deficiency even if serum b12 is within range. See BNF and BSH links up page.
Articles about patients who suffered SACD, sub acute combined degeneration of the spinal cord with serum b12 levels that were normal range.
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