I am rather new to all this and would be very grateful for some advice.
I recently had a blood test as I had moved GP surgeries and it came back with low B12 (70). I am on a course of 6 injections over 2 weeks, just had my 5th today.
I have been given a blood form for ‘pernicious anaemia testing’ and told to go in 3 months time from my last injection. However the nurse today advised to go in 6 weeks time?! When is the ideal time to be tested after the 6 loading injections?
I have had gastric issues for years as well as periods of extreme tiredness, so u sure if it PA /B12 deficit or as I thought the menopause (with a foggy brain)! 😆. The loading injections haven’t made me feel that well. I’m hoping this will improve?
I would be grateful for any advice.
thank you 😊
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Digbydog123
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Testing during injection makes no sense. It is logical that the values are then (falsely) high. In addition, they usually recommend 2 injections per week to start. My son first received injections every 72 hours and later every 48 hours. No improvement at all. It is now clear whether B12 deficiency is perhaps a symptom of an underlying thing. Tip: sign up to a Facebook group (private), there you will learn a lot. But don't stare blindly at B12 alone, like we did. Keep thinking along, and listen to your own feelings
During treatment with vitamin B12 injections, serum B12 is often tested to ascertain the frequency of injections, to see if the value rises, or to base maintenance treatment on.However, this value says nothing about the effect of the treatment. The patient’s symptoms should be the only guideline for basing treatment. After a loading dose of 10 injections in 5 to 10 weeks, a maintenance dose can be determined based on the symptoms.
When obvious neurological symptoms are present, it is recommended to give frequent injections (weekly or even twice weekly) for a longer period of time. Other patients can reduce the frequency slowly based on the symptoms. When symptoms reoccur, the time between two injections is considered too long.
Because there is no danger of overdosing vitamin B12, it is preferred to base treatment upon the individual needs of each patient in order to attain optimal recovery.
Some patients can have a bi-monthly maintenance dose straight after the loading dose. However, a large number of patients experience recurring symptoms on bi-monthly injections. It is not clear why, but large groups of people need much more vitamin B12 than the recommended maintenance dose to feel well and prevent recurring symptoms. Research in to that question is underway.
One of the most common problems in the treatment of a vitamin B12 deficiency is that people receive insufficient injections to feel well. Often the serum B12 value is used to ascertain the frequency but there is no correlation between the serum B12 value and the symptoms experienced by patients. Also many physicians are, erroneously, afraid of an overdose.
Scientific information that serum B12 cannot be used as a guideline for treatment:
I really appreciate your replies. It is a huge learning curve and quite a daunting prospect. I’m off for my last loading injection tomorrow but feel much better prepared…..thank you.
If you have been given a form for "pernicious anaemia testing", this is not a serum B12 retest, but as Nackapan has already advised in her reply; the intrinsic factor antibody test (IFab).
There is not really such a thing as a true PA test - this is the nearest we have. It will be a positive/negative test result. The biggest problem with this test is not so much that an IFab positive result will only identify about 50% of those with pernicious anaemia, but that many GPs do not seem to realise this. For this reason, a GP might easily believe that a single negative IFab test result is definitive -and this is demonstrably not the case. Martyn Hooper (founder of the Pernicious Anaemia Society) had three tests before getting a positive result.
The National Institute for health and Care Excellence ( NICE: UK medical professional guidelines) are very clear about this : "Antibodies to intrinsic factor are very specific for pernicious anaemia, but are only present in around half the cases"
It is usual for treatment for B12 deficiency to start with six "loading" injections over a short period (mine took four weeks, but two weeks more likely). Then "maintenance" frequency starts - often meaning one injection every 3 months, 2 if you are lucky.
However, if you have neurological symptoms, the injections should be every other day until nothing more can be gained by this, and only then one every two months to maintain gains. This is the NICE advice currently. Gains are not measurable by testing total serum B12. This is about symptom control, which has to involve the patient. The decision about when to stop seeking a complete return to your old self and to concentrate solely on not deteriorating again must surely end with you.
So, to my mind, the point of the maintenance injections being to maintain the gains made from the loading dose would only work if you are happy that this has occurred in the first place. There is also no guarantee that an injection every two months (or three months) will be effective for each individual in maintaining any gains made.
Uniformity of treatment frequency would be very difficult to justify:
Do we all have the same symptoms ? No.
Do we share the same severity of symptoms ? No.
Have we all been deficient for the same length of time ? No.
Did we all have the same initial B12 result ? No.
Were we all "otherwise healthy" ? No.
Do we all have pernicious anaemia ? No.
Many of us have found that we have low ferritin, folate and vitamin D that is initially difficult to stabilise. Your B12 deficiency should be treated before addressing any folate deficiency. Get these tested and monitored by a GP, and ensure you have the help you need to get these to ideal levels and stabilised.
There are quite a few other causes of low B12, but indication that you may have pernicious anaemia (aside from the IFab test mentioned) could be a strong family history of the condition and other autoimmune conditions, such as Hashimoto's or Grave's disease, vitiligo or psoriasis. There are many more - these seem to be the ones most often mentioned. Talk to family members .
I could tell you what worked for me, but I don't think this would necessarily be helpful. I don't have a PA diagnosis and have had three negative IFab tests.
NICE, BNF (British National Formulary) and BCSH (British Committee for Standards in Haematology) all publish guidelines that your GP should be aware of. I would check these.
I do not believe that anyone else here, or on Facebook for that matter, can tell you what will work for you. There is no miraculous discovery and very few experts in this field.
My best advice to anyone starting out is to keep copies of their own medical records and test results (especially a positive IFab test result!) and to keep a daily symptoms chart or diary, logging also when injections were given. Ideally, a pattern will emerge that will give you a clue about when you need to pre-empt a cycle of deterioration with an injection. This will be something for you to keep, to show to any medical professionals if you choose to, to demonstrate what treatment regime is required- and hopefully for you to look back on and recognise that you are improving.
Thank you Cherylclaire, your response was ever so helpful. I feel better prepared going to the doctors today. I’ve written notes and will keep a diary as you suggested. I’ve also bought Martin Hoopers book.
Thank you again, I really appreciate your kindness in taking the time to reply.
I post a lot of information so I suggest you take at least a week to read through it so it's not so overwhelming.
Some links may have details that could be upsetting.
Do you have neurological symptoms eg tingling, pins and needles, muscle twitching, brainfog, memory problems, migraine, poor balance etc?
There are many other neuro symptoms associated with B12 deficiency.
The reason I'm asking is that if you have neuro symptoms (brainfog is a neuro symptom) then I would expect you to be on the treatment pattern "For those with neurological involvement" outlined in link below.
Link above also discusses when patients with B12 deficiency should be referred to neurologist, haematologist, gastro-enterologist.
Your GP appears to have put you on a treatment pattern for those without neuro symptoms.
It's vital to get adequate treatment. Inadequate treatment increases the risk of developing permanent neurological damage. In severe cases, the spinal cord can be affected.
Does your GP have a list of all your symptoms?
I used PAS (Pernicious Anaemia Society) list below and added extra symptoms at bottom of list.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
I urge UK forum members to find out what's in the local guidelines for their ICB (Integrated Care Board) in England or Health Board in Wales/Scotland. Not sure about NI.
If you can't find them with an online search or by searching forum posts then best bet is to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Some of these local B12 deficiency guidelines are not as helpful as they should be. See blog post below.
Thank you so much. Lots of reading and learning to do.
Yes I do have brain fog and am grateful for your comments with regards to this as I hadn’t fully appreciated this was labelled as a neurological symptom. Very much appreciated. X
If I'd known years ago what I know now, I would have been able to argue more effectively for better treatment and not had such a hard time.
When you say a B12 level of 70, do you mean serum B12 (also known as total B12) and were the units were ng/L?
A typical reference range for serum B12 would be (180 - 900 ng/L).
If your result was 70 ng/L for serum B12 then I'm surprised you're not bedridden.
Serum (total) B12 70 ng/L is very very low.
Serum B12 is sometimes measured in pmol/L.
70 pmol/L for serum B12 would also be very low.
There is another type of B12 test that the NHS sometimes uses called Active B12 (also called holotranscobalamin).
If you struggle with brainfog, I hope you have helpful friends or family who can read through this with you.
Some UK forum members turn to treating themselves if NHS treatment is not enough for them. Some get extra B12 injections from private GPs or beauty salons, some try high dose oral B12 but this doesn't work for some and some as a last resort try self injection.
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B12 deficiency - when to test
? Pernicious anaemia with normal B12 and no anaemia?
Can you insist on a Pernicious Anaemia Test with low B12?
Body Aches with Pernicious Anaemia when B12 is running very low
Thank you Health Unlocked & Pernicious Anaemia Society & B12 Deficiency Support group
