Hi.. I’m wondering if anyone can help me.. I’ve recently been diagnosed with low b12, the doctor said I haven’t got pernicious anaemia as, although my intrinsic factor is low it’s ‘ok’, so he put me on b12 injections. I’m currently on the loading phase, 1a week for 4 weeks then 1 ever 3 months. I’ve had 2 injections and due another in a few days.
My main concern is that since starting the injections my symptoms of fatigue, low mood, weakness, irritability etc have all got a lot worse and I’ve also got quite bad gastrointestinal issues now, ie diarrhoea and feeling nauseous all the time. Is this ‘normal’ and will it get better the longer on the medication? I was really hoping it would help me feel better and have more energy, not worse with less energy!
If anyone can offer any advice I’d hugely appreciate it!
Many thanks
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Pippepin
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Hey there, thanks for reaching out. Can I ask where you are in the world - is it the US?
In the UK you need 6 loading doses of hydroxocobalamin within 2 weeks, and this should continue until symptoms stop improving if you have neurological issues - pins and needles, headaches, or even depression/mania etc.
Your dosage and B12 type may be different.
Either way, it's not unusual to feel worse before you feel better. The body has been deprived of B12 for a while and so it tends to hurt a bit as it reverses the damage that you have got used to/put up with.
And you are only 2 jabs into it. Most people who feel better straight away tend to do so after the 6 jabs. For others it can take months or even years to feel OK.
I’m in the UK, my B12 level was after 2 blood tests, they then tested my intrinsic factor but was told that was ‘ok’. I eat a very good diet including red meat, fish, chicken, eggs, fruit n veg etc..
The doctor said he thought I wasn’t absorbing the b12 from my diet so has put me on injections of 1mg a week for 4 weeks then 1 every 3 months.
I’ll keep going with it and hope I feel a bit better soon.. my fatigue and weakness has increased dramatically and I can’t be too far from a toilet at the moment 🤦🏻♂️!!
As stated by Nackapan, the intrinsic factor test may not be totally accurate.
What was your level, with the ranges (this should be at the side of the blood test results).
And do you drink much alcohol?
If the Dr thought you weren't absorbing b12, I am dumbfounded as to why he isn't investigating a PA diagnosis further. But also, once a week injections are not enough and not even the guideline. You must receive 6 loading doses every other day for 2 weeks. And you need this to get levels up and the B12 swimming in your body. Once a week will see your levels dipping soon after the jab and will not be sufficient.
I would suggest you call the surgery and if you feel confident to do so, inform the Doctor that you believe it is an absorption problem and in that case, NICE guidelines (which he should be following) state you need 6 jabs over 2 weeks:
I hope the Doctor responds favourably to you. Every region of the UK has different ranges, which doesn't help anyone. But if you are struggling with heavy symptoms, that interfere with your life, the Dr should be understanding.
After testing abs finding my b12 was low they tested for intrinsic factor via a blood test abs I was told that the level was ‘ok’ and there must be a reason that my body’s not absorbing the b12 from my diet. So have been put on the injections. My folate iron and vit d we’re all ‘normal’ apparently!!
Thank you again for your help and responding to me! I hope your alright too
Hi, my only advice would be to get a copy of your actual results for all tests. 'Normal' doesn't tell you enough. Most of us learn this the hard (and long) way, but it is worth doing as then you will know where you started from and will have something to compare later. (Not that you will be comparing serum B12 again now that you are on injections, that would be pointless). I am glad that you are on injections, but your doctor doesn't seem to understand B12 absorption if he has not referred you for further testing. Did they advise more potassium-rich foods, because the B12 injections will be increasing your potassium useage. You'll also be using iron and folate (as well as the B12) to make red blood cells, so if they are low 'normal' that could be making you struggle more than necessary. Cheers
Further to advice from the other respondants:My B12 was initially not far below range, folate and ferritin were within range although low - but I was given B12 injections and later folate and ferritin course of tablets for three months as my hair was falling out and my gums were bleeding.
Vitamin D was also low - or low enough that osteoporosis of the spine was found. So now I get vitamin D on prescription.
So all worth checking and, as has been suggested, ask for copies of your results for your own records - that way it will be easy to check when you are at optimum levels for your wellbeing. Something that can take time to recognise and stabilise.
"Worse before better" seems to be quite a common hurdle.
Hope you feel the benefits soon.
Since daily diarrhoea was on of my initial B12 deficiency symptoms (along with increasing fatigue and lower back/l/h hip pain)- I can't help you there !
I'm sorry I haven't got any time today but think that once a week B12 injections are better than the standard "3 a week for 2 weeks) but these should be continued until you have no deficiency symptoms - potentially lots more than 4 weeks and maybe even forever, depending on the cause of the deficiency.
If you have bad guts you need to be referred to a specialist gastroenterology team.
I suggest you take at least a week to sift through this so it's not so overwhelming.
Bear in mind that some links may have details that could be upsetting so you may want to read through it with someone else.
If you have concerns about treatment/diagnosis I suggest you put your concerns in a brief, polite letter to GP and maybe also copied to practice manager. Harder to ignore in my opinion. Keep copies.
Info passed on verbally may get missed or forgotten.
There are currently new NICE (National Institute for Health and Care Excellence) guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).
Local B12 deficiency guidelines
Each CCG (Clinical Commissioning Board)/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.
Worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links above.
Some local guidelines have been posted on forum so
1) try a search of forum posts using terms "local guidelines"
2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines"
3) submit a FOI (Freedom of Information) request to CCG/Health board asking for a link to or a copy of local B12 deficiency guidelines.
If you want to know why I urge UK forum members to find their local B12 deficiency guidelines, read the blog post below.
UK guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease...and anyone with a first degree relative with coeliac.
Any possibility of internal parasites eg fish tapeworm?
Have you ever eaten raw fish eg in sushi/smoked salmon etc?
Have you lived or stayed in an area where internal parasites are common?
One clue that internal parasites may be a possibility is an increase in eosinophils, a type of white blood cell. Eosinophil results can be found with results for Full Blood Count (FBC).
Misconceptions
Unfortunately there are some doctors and other health professionals who have misconceptions (wrong ideas) about B12 deficiency.
I suggest finding out what the common misconceptions are in case you meet a health professional with some.
"they then tested my intrinsic factor but was told that was ‘ok"
"My folate iron and vit d we’re all ‘normal’ apparently!!"
The best piece of advice I ever got was ....
to always get copies of or access to my test results.
There have been forum members who found abnormal and borderline results when they got copies, after being told everything was normal. Compare older results with more recent results as a downwards or upwards trend may be significant even if results are within normal range.
There was at least one forum member who when they accessed their records found out that they had been diagnosed with PA in the past but never been told.
Can be interesting to access rest of medical records as well as test results to see what doctors have said in the past.....
As far as I know, patients can also request access to paper records as well as digital records.
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case you need it in the future.
I hope your GP is kind and caring but if you have any difficult experiences the guidelines below may be useful.
NICE guidelines -Patient experience in adult NHS services: improving the experience of care for people using adult NHS services
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, more B12 books, more B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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