B12d advise required

[Frenchfield]

Bloods suggest b12d (101). I have good diet high is leafy greens. Doctor suggests it is possibly caused by my microscopic colitis. I have extreme fatigue, blurred vision, Burning lower leg and feet, pins needles and numbness of lower left arm and fingers. My Doctor is giving me loading injections once a week for 4 weeks then will go to 3 monthly. Could anyone advise what I should be doing to help myself? I am on my third weekly injection with no difference to my symptoms. Thank you

[Nackapan]

Sometimes thd regime and should be in in the UK every other day Injections are given to load if thats not the caes and you having them weekly I'd strongly advise you carry on with weekly as long as possible until improvements

I cant see folate level. That should've been checked.

Ferritin although in range can give symptoms below 50.

Vitamin d good to check too.

A multivit that usually has 200mcg folic acid and 14mg iron (supermarket) is an option until you know if you need to supplement from future bloods.

No difference at all yet?

Sometimes symptoms can worsen initially.

It takes time.

Keel a daily record. Eat well drink lots of water.

Hopefully toh will eventually sed improvrments. Some think weekly a less oc z shock tk tour symptlm skne would rather get levels uk higher quicker.

[Sleepybunny in reply to Nackapan]

I agree with Nackapan that your folate level needs to be checked.

[Seth12345]

Simple: You need more frequent injections. Your level is very low and you have symptoms.

[Gambit62 Administrator]

B12 is only found in animal products so lots of green leafy veg in your diet is pretty irrelevant.

Unless you eat little or no meat/fish/dairy/eggs the most likely reason for a B12 deficiency is an absorption problem such as Pernicious Anaemia which is an auto-immune condition that affects the gut and attacks the mechanisms that allow you to absorb B12 in the ileum. This is actually located before the colon so not sure that colitis would explain the problem but then I'm not medically qualified. Possible that the colitis might cause a secondary problem that has affected the ileum, or that the B12 absorption problem and the colitis might have a common cause.

I am assuming that you aren't based in the UK as the loading dose regime isn't one used in the UK. Different countries have different regimes and in some cases they don't have any national protocols.

In the UK the regime recommended for people with neurological involvement is much more aggressive than that your doctor has prescribed - comprising loading shots 3xweekly until symptoms stop improving.

You can find a copy of the UK standards here

onlinelibrary.wiley.com/doi...

It can sometimes take a while for people to notice differences and sometimes things get worse before they get better so it may be that you need a more aggressive loading regime, or it may be that you need more time. Sorry but things vary a lot with B12 deficiency and it is impossible to say exactly how any individual is going to respond.

[marsupial in reply to Gambit62]

I am based in the UK and my doctor gave me loading dose once a week for 5 weeks then went on to 3 monthly. I believe it was because he was an older doctor who had always done it this way! He also said it would be for life but another doc tried to put me on tablets. Different surgeries and docs make their own rules up I think .

[Gambit62 Administrator in reply to marsupial]

Marsupial, there was a lot of confusing and conflicting information to come out to GPs at the start of Covid-19.

This is the latest advice from the BCSH about treatment during the pandemic

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

Whilst it does suggest trying tablets it also makes it clear that it has to be an informed decision by the patient (though I agree it can be difficult to get this when the GP may have little or no understanding of B12 absorption problems). At present there aren't any recognised sources for the 1000mcg tablets mentioned in relation to absorption problems - just that there aren't any sources that currently are approved against pharmaceutical standards - so you'll need to use vitamin supplements and there is no guarantee that it will work - hence the statements about going back if there are problems. If you are having problems then I'd suggest going back to your GP with the above.

Some health trusts are still using standards that are very outdated.

[marsupial in reply to Gambit62]

Thanks for info, Gambit62. Love all the support and advice from this forum 😁 I argued my case as have neuropathy symptoms so she let me continue, however she stated she would not bring my injections down to every 8 weeks even though I told the receptionist all my symptoms return by 5 weeks, think it her way of staying in control! I now self inject whenever I feel the need, which at the moment due to stress etc over Covid and working in the public as well as having children going back to school/sixth form it’s now twice weekly. Hope to change to less frequency soon.

[Gambit62 Administrator]

Frenchfield - I am going to delete the image of your results as the name of the requester is visible at the top.

To repost image without the name visible you can edit the post - option found in More located just under the post

[Sleepybunny]

Hi,

Do you also have the results for your Full Blood Count?

There can be useful clues as to whether there is B12, folate or iron deficiency on FBC.

There is a recommendation in your results to have an Intrinsic factor antibody test.

This is a test for PA (Pernicious Anaemia).

If PA is a possibility, worth joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines a process for diagnosing PA and Antibody Negative PA in UK

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

Useful B12 book

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in book is out of date. See BNF link for up to date info.

"Doctor is giving me loading injections once a week for 4 weeks then will go to 3 monthly"

If you're in UK, the treatment pattern above is not typical of what is usually offered.

See BSH and BNF links above if in UK.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Have a look at my replies in the thread I linked to below which has links to B12 deficiency symptoms lists, causes of B12 deficiency, more B12 books, B12 websites, UK B12 documents and other B12 info including some hints on dealing with unhelpful GPs which might be useful.

healthunlocked.com/pasoc/po...

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.

healthunlocked.com/pasoc/po.....

I am not medically trained.

[Hidden]

It would also be good idea to figure out what is causing your ‘microscopic colitis’, the usual culprits of IBD are gluten and dairy, even if you’ve not had a problem previously. H.pylori infection can cause all sort of absorption problems, inc IBD- don’t just treat the symptoms, treat the causes too.

[Mozza127]

Every 3 months is to far apart to start to control symtoms