Hi - I had a right hemicolectomy for neuroendocrine cancer (tumour in my terminal ileum) in April '24. The previous December (Dec '23) i went to my GP with mouth ulcers that wouldn't heal and after a blood test was diagnosed with a Folate deficiency and prescribed folic acid. Following that I was really fatigued, had peripheral tingling, tinnitus, heartburn...back to GP...very long story short....CT scan found the tumour. Successful surgery to remove tumour (cancer was also in lymph nodes but for now...all good). BUT i have been left with the tingling, tinnitus, heartburn, aching muscles. B12 tested June and Sept - both results were indeterminate but were reported back to me as 'satisfactory' so no action taken by GP, despite me reporting neurological symptoms. Changed tack and saw the advanced nurse practitioner instead of the GP in November - blood b12 results were 45 - ANP said my previous results were also indeterminate and I should have been treated (lab results on system also state "treat if symptomatic"). ANP highlighted to GP and I was prescribed 5 x loading B12 injections and maintenance injection every 3 months (NICE guidelines state loading on alternate days until no further improvement then maintenance injection every 2 months). Anyway, had the 5 loading injections - felt like a new woman for 1 month, then symptoms returned and are now even worse than before. GP stated I can't have a B12 deficiency if symptoms have returned so quickly. Told my oncologist all of this yesterday and they said they will write to my GP requesting monthly B12 as I clearly need it (and all the signs are it is a b12 deficiency). My question is, should I restart the loading as this wasn't done correctly initially before then having monthly maintenance injections. (NB: assumption is that the removal of a significant chunk of my terminal ileum during right hemicolectomy has resulted in absorption issues). Feeling at the mercy of medics who don't seem to understand B12 and my symptoms get worse for every day that goes by. I take folic acid for folate deficiency and my ferritin is apparently dropping every time i have a blood test but not currently being treated for iron deficiency. Thanks for any advice...
B12 deficiency after right hemicolectomy - Pernicious Anaemi...
B12 deficiency after right hemicolectomy
I would say definitely yes on repeating loading doses. You are correct in that a tumor (I'm guessing you're in UK because you spell Tumour in correct English) 🙂, and/or surgery in the Terminal Ileum can cause malabsorption of B12. Then with your symptoms, I would continue with weekly or twice weekly until those symptoms are gone. After that you'll have to feel your way and experiment. I've settled, after four years, on every 4 to 6 days interval depending on how I feel. However, I'm in US so that is with prescription to SI.
Get your B12 it's critical so don't let them bully you. If you're in UK, other forum members on here can better at helping to navigate the NHS.
Wishing you well, Rexz
Your ileum is where your B12 is absorbed . It amazes me that the medical profession is often so ignorant on anything to do with B12 deficiency . You need B12 injections as often as is necessary to keep all those b12 deficiency symptoms completely at bay . We are all different, and there’s no knowing how often you will need them . Many of us on this forum have difficulty in obtaining regular enough B12 injections , and are forced to obtain B12 ampoules for self -injection from excellent German online pharmacies . That’s how we stay well . You must try to get regular enough injections from your surgery. If you fail , you can get information from this forum about what to do .
I know some patients on this forum need daily injections . Some manage on 3 monthly, and anything in between .
Best wishes .
Yes. This is something documented in a case study in Martyn Hooper's book: What You Need To know About Pernicious Anaemia and B12 deficiency.
I also think clivealive had part of his terminal ileum removed. Am I right ?
Sorry SLM12 - you seem to be hitting a brick wall with medical professionals on this. Yes, I would expect a restart of B12 treatment with reloading. Neurological symptoms need more - yes, EOD until no more can be gleaned. And I'd ensure that that is a discussion not a GP decision. Your recovery after all, and nerve damage repair can take a couple of years. Can also not happen/ be partial. So ensure you are involved in calling a halt to that; you have been through much and need to be allowed a certain amount of ownership where possible. Wishing you well.
Thank you. Today oncology emailed my GP (copying me in) asking them to re-start loading (alternate days until no more improvement) then monthly thereafter. I don't think that will go down well with my GP but here's hoping!
It doesn't have to go down well with your GP. It only has to get you back to better health.....
Shouldn't that be exactly what your GP wants for you ?
Let us know how that works out.
Hi,
Welcome to the forum.
Apologies for quick reply as busy with other things.
"Feeling at the mercy of medics who don't seem to understand B12"
I'm sure many on this forum can relate to your comment above.
I thought you might find these articles worth reading.
Link about iron tests
labtestsonline.org.uk/tests...
Link about Full Blood Count
labtestsonline.org.uk/tests...
NICE (National Institute of Health and Care Excellence) has many documents worth reading.
Search for these if you have time.
"NICE B12 deficiency guideline" - published 2024
"NICE CKS Anaemia - B12 and Folate deficiency" - updated 2024
"NICE CKS Anaemia - Iron deficiency"
Patient Info website has a useful article on non anaemic iron deficiency.
Try to find the local guidelines for B12 deficiency, folate deficiency and iron deficiency used by your ICB (Integrated Care Board) in England (Health Board in Wales/Scotland).
If you can't find them online, best bet is probably to submit a FOI (Freedom of Information) request to ICB/Health Board asking which guidelines for (B12 deficiency/folate deficiency/iron deficiency) they are using and for a link to or copy of them.
I left very detailed replies in threads below which might be of interest eg links to help those in UK struggling to get adequate treatment, various B12 websites.
I suggest reading a bit every day over a week so it's not so overwhelming. Some links may have details that could be upsetting to read.
Help Needed! Have I got Pernicious Anaemia?
healthunlocked.com/pasoc/po...
Patient Safety (UK)
healthunlocked.com/pasoc/po...
Is this the tip of the iceberg?
healthunlocked.com/pasoc/po....
I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.
Thank you! I have done a lot of reading around the subject so that I can talk some sense when I see my GP (not easy with fatigue!) but it is disheartening when it is evident that the GP doesn't understand the condition and is claiming it must be something else.🙄 Having read posts here I'm certain it's b12, and possibly cofactor deficiencies, that are the issue. Thank you for directing me to the local health boards - I didn't realise they all had their own guidance. I found mine and looked up B12 guidance and it mirrors the NICE guidelines so it is clear that my GP is currently not following local or national guidance.
Hi again,
"so it is clear that my GP is currently not following local or national guidance."
You might find some recent blog posts from B12info.com helpful.
B12info.com is run by Tracey Witty, UK campaigner on B12 deficiency issues.You can leave comments under the blog posts and sometimes she replies to them.
Lots of other helpful info on B12info.com
Have you considered joining and talking to PAS (Pernicious Anaemia Society)?
pernicious-anaemia-society....
PAS membership is separate to membership of this forum.
You do not need a PA diagnosis to join.
PAS have some interesting blog posts
pernicious-anaemia-society....
including...
The NICE B12 guideline – has anything changed?
pernicious-anaemia-society....
PAS Statement on the Publication of the NICE Guideline
pernicious-anaemia-society....
You can leave comments under the blog posts.
Help for GPs
(Apologies if you've already read this - thought it'd be helpful to post again as mighty be worth pointing out to your GP)
1) PAS website has a page for health professionals.
They can join PAS as healthcare affiliate members, no charge.
pernicious-anaemia-society....
PAS have webinars on topics relating to PA and B12 deficiency.
pernicious-anaemia-society....
These are open to members and non members.
2) Has your GP and your doctor colleagues heard about CluB-12?
It's a group of doctors and researchers who are looking into B12.
They have regular zoom meetings and have hosted a conference in UK.
Their website mentions a conference in France in 2025.
3) Good articles to pass to GP
B. Wolffenbuttel wrote an article for PAS in Jan 2024.
Only One Chance
pernicious-anaemia-society....
Search for "Wolffenbuttel B12 deficiency" to find other articles he's written, including one for Mayo Clinic in US and one for BMJ (British Medical Journal). His most recent article published July 2024 discusses best practice for diagnosis and treatment.
In my personal opinion he's one of the few doctors who understands B12 deficiency.
4) B12d.org organises interesting online talks about B12 deficiency.
I left a lot of info in thread about Patient Safety about people to contact if unhappy with treatment.
Thank you again for all this great info. I am on the PA page and have picked up some great info from there too. I love that article you have linked from Wolffenbuttel! My doctor said I had experienced the 'placebo effect' after my initial loading, but as the benefits had worn off in 4 weeks I couldn't be deficient. I need her to read this article!
I had a hemi-colectomy 50 years ago when I was 27/28. I was diagnosed with ileo-caecal TB and later more surgery for Crohns. B12 was never mentioned !
In 2005 I was diagnosed with Hashimotos and so my journey to wellbeing began. I discovered B12 and started injections some 10 years ago. The lower leg/feet neuropathy noticeably began around 20 years ago but general leg weakness much earlier.
I have lived with spondylolithesis for around 60 years (after a bad fall) and had surgery for stenosis in Germany in 2007.
I have always thought my spinal injury was the root cause until I knew more about B12. I recently met with a spinal surgeon to discuss a Fusion op. A wonderful guy who thought my PN may not be saved by surgery as he thought it was connected to my gut surgery affecting B12 absorption back in '72. Wow at last an enlightened man. I now await nerve conduction testing and have increased injections to EOD - hoping for the best.
I sincerely hope you find wellness and the treatment you so deserve... thank you for your post and bringing more awareness. 🌻
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