Elevated B12 after supplementing - good or bad?

[countmonkula]

Hi everyone, I've only just joined this forum & I'm hoping it's OK to ask a possibly silly question! I was diagnosed with low B12 and folate more than a year ago, having visited GP due to fatigue, and was prescribed daily 1000mg B12 tablets. It seemed to make a difference to the fatigue within about two weeks. I was re-tested three months later and told everything was fine and to continue taking the daily tablets. (I didn't have access to my test results then, so I never knew what the levels actually were at that point.) But the fatigue still hits me fairly regularly so my GP has re-tested B12 and folate, along with FBC and antibody tests. I've seen some of the results on the NHS app today, and it shows my B12 is now at just over 1130, which is above the normal threshold. Folate is within normal range and apart from slightly low VitD there are no other obvious abnormalities on the FBC. I'll be making an appointment to discuss things further with my GP, but in the meantime my question is, is the elevated B12 a good sign that my body is absorbing the B12 properly from the tablets? Or could it be a sign that my body isn't using the B12 as it should be and is just kind of storing it, if that makes any sense? I can't see the antibody test results yet but I'm just wondering whether I should be pleased or concerned about the now overly-high B12! Thanks

[Nackapan]

If your Initial serum B12 test was low and you've only had oral B12 its s good sign your symptoms are improving.

Also your B12 serum testers are up.

You must've processed/ absorbed some .

If your b12 deficiency is dietary oral supplements should be enough if caught early

On high doses of a b12 tablet passive absorbtion is also possible but only a tiny amount .

Sometimes b12 can simply be circulating but not getting to cell level its

been reported on here.

As more research and understanding is needed there are other tests .

Serum B12

Active B12

Intrinsic factor antibody test ( picks uk about 50% of those with autoimmune condition/ disease.

The cause is not always s found .

If you are not vegan and eat a diet rich in B12 , its most likely an absorbtion problem.

Saying that other factors slow B12 absorbtion.

High alcohol intake.

Some medications

Hormonal changes

Age absorbtion can slow as less stomach acid

So many other conditions like chrohns .

Some of a long list .

Go by your symptom relief to see if you are able to use the high dose supplement.

Functional B12 deficiency when youf B12 is in range but you ard still poorly ask for more tests .

MMA

As you csn see its complex.

If you can establish the cause it helps.

4 examples in my family.

Yes it does run in families.

My mum : after sn oopherectomy had bladder problems

Migrains

Fatigue

It happened slowly ovef yesrs .

Nothing else found to treat.

Low B12.

Currently 8 weekly b12 injections

My sister a healthy vegetarian for 40 yrsrs .low mood. Fatigue. Arms and wrists losing feeling.

Recovered on daily B12 tablets she will take for life.

Her absorbtion slowed ( hormonal changes) as diet the same

My daughter as undiagnosed for so long has been left with a disability .

On 10 weekly b12 Injections .

I need weekly b12 injections.Tried oral B12 .

Tried bigger gaps between b12 injections

Taken years to get functioning .

Only a few symptoms overlapped within our family.

Hormone changes

Fatigue

Vertigo.

We are all different.

Concentrate on how your symptoms have responded.

You started with a good quick response.

Plenty of links to read on here.

PAS have info.anc many other b12 charities do.

I hope it was caught early .

It's common it seems for vit D ,iron,ferritin, folate to accompany low B12 .

Keep us posted how you get on .

Many wise heads on here with personal experiences.

G.ps do not get enough training on B12 .

Also look at NICE guidelines that G.ps use

[charks]

I take oral B12 but I need a much higher dose – 5000mcg – to feel well. It sounds a lot but only about 2% of oral B12 can be passively absorbed. You probably need more which is why you still feel fatigued.

Don't worry about your B12 level. It isn't that high. Most of us have levels over 2000.

[Tanitha]

Don't ignore the low vit d, it can make you feel quite unwell.

[Sleepybunny]

Hi,

Welcome to the forum.

I've assumed you're in UK.

I post a lot of info so might be best to read a bit every day over a week.

Some links may have details that could be upsetting.

People on this forum often report folate, iron and Vit D deficiencies as well as B12 so I hope these have been tested.

It's also quite common here to also have thyroid issues. Have you had recent thyroid tests?

Might be worth posting on Thyroid UK forum on HU.

If your B12 deficiency is not due to diet, I would expect your GPs to at least test you for PA (Pernicious Anaemia) and Coeliac disease. Have you been tested?

Thread about tests for PA and B12 deficiency

healthunlocked.com/pasoc/po...

Coeliac UK article - Getting Diagnosed

coeliac.org.uk/information-...

It's vital to get adequate treatment for B12 deficiency. Delayed or inadequate treatment increases the risk of developing permanent neurological damage.

In severe B12 deficiency, the spinal cord may be affected.

I'm not medically trained but if you had or have neuro symptoms, I'd expect gp to have you on B12 injections.

Search for "BNF hydroxocobalamin" then look in section that discusses doses.

BNF stands for British National Formulary, it's a treatment guide for doctors.

This will show treatment guidelines for B12 deficiency for those without neuro symptoms and those with neuro symptoms. You can also look in BNF book Chapter 9 section 1.2

NICE is the National Institute of Health and Care Excellence.

NICE B12 deficiency guideline was published March 2024 and is likely to influence the treatment GPs give to patients with B12 deficiency. I have concerns over this document, I think there's too much emphasis on treating people with oral B12.

Oral B12 treatment is cheaper than B12 injections for GP surgeries so I am rather cynical about why it's being promoted. B12 injections are cheap...but nurses' time to give them is not.

PAS article on new NICE B12 deficiency guideline.

pernicious-anaemia-society....

B12info.com article on new NICE B12 deficiency guideline

b12info.com/first-nice-guid...

Try to find local B12 deficiency guideline used by your ICB (Integrated Care Board) in England (Health Boards in Wales/Scotland) as GP will probably look at these.

I left detailed replies in thread below with symptoms lists, info on functional B12 deficiency, UK B12 documents, links for those unhappy with treatment, useful articles to pass to GPs etc....

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

You might find it interesting to look at my recent thread

Is this the tip of the iceberg? NICE B12 deficiency guideline.

healthunlocked.com/pasoc/po....

"I didn't have access to my test results then, so I never knew what the levels actually were at that point."

My understanding is that you should be able to get access to these. You might have to formally request that the info is made available. See links below.

nhs.uk/nhs-services/gps/vie...

patients-association.org.uk...

I'm not a health professional just someone who suffered for years from unrecognised and untreated B12 deficiency and wants to help others avoid what I went through.

[Hockey_player]

It is normal to have elevated B12 when you are supplementing. To figure out if this method of getting B12 is working for you, pay attention to your symptoms. If you have B12 deficiency symptoms still, then you probably need injections. I managed fine on supplements for many years. But then my toes started tingling and hurting so I had to switch to injections.

[countmonkula]

Thank you all for taking the time to reply - I'll make sure to read through all of the linked information when I get chance

GP requested iron & thyroid tests too and they have come back as normal. I've started VitD tablets already (which I used to take daily but for some reason I stopped... Whoops!) I'm sure I was checked for Coeliac a year ago and was negative for that, but I keep meaning to request access to those old results so that I can have a look for myself. I think the only result we're still waiting for is the Intrisic Factor Antibody test... The symptoms definitely did ease up for a bit after starting the tablets but the fatigue I've experienced recently is very similar to how it was before I started supplementing & the GP I saw most recenty did suggest I might need injections, although I wonder if she'll be less likely to go ahead with that if my levels are a bit higher than the normal range now. But definitely something I'll check with her when I go back; I'm due an ECG next week to rule out any heart issues so once we've got all of the tests done then hopefully we can work out the next steps. Thank you all again, it's really helpful to get perspective from people who understand!

[bookish in reply to countmonkula]

If you have a GP who said you might need injections, do your best to get some and see if it makes a difference. My serum was >2000, on very high dose oral, and I have been on oral for years, but GP suggested a trial and I am now on weekly injections with obvious benefit (ie starting to improve rather than getting worse slower!).

[Jeep13]

if you have PA you will have spuriously high serum B-12