high levels

I did have very low levels of b12 under 100.

i now hear injections every 3 months. And my levels are around 800

Is this normal?

[Jillymo]

It is perfectly normal when on injections

I hope your feeling better.

Happy New Year

[Hidden in reply to Jillymo]

Happy new year to you too.

Thanks so much for the reply.

Do you think that as I have high Levwls now it’s cured and the need for injections may stop

[Jillymo in reply to Hidden]

It depends on the cause of your deficeincy. If you have been diagnosed with PA you will need regular injections for life. 🤗

[EllaNore in reply to Hidden]

Hi Amyamy123, I'm not a doctor but this is my opinion. If you're a vegan or a vegetarian and your B12 deficiency is because of a dietary issue from not eating meat, then all you have to do is sublingually take B12, you don't have to eat meat if you're vegetarian but you need to take B12 and that should reverse any symptoms and you should be okay if you haven't been deficient for too long. But if you're not going to eat meat you do need to take B12 every day for the rest of your life but you can take it sublingually.If you can't absorb B12 because of an autoimmune condition, then you need injections for life. I inject everyday. My B12 is usually above 2,000 yours is only 800 even after injections. I'm not a doctor but in my opinion I kind of expected it to be a little higher than that. At least 1500

How do you feel between injections? That's quite a long time to wait between them. Can you tell us a little bit more about your symptoms and your circumstances?

There is no cure for B12 deficiency caused by an autoimmune condition. You have to have B12 injections for the rest of your life. If you're not feeling well then possibly you're not getting enough B12. Do you have cognitive issues, concentration issues, verbal issues, trouble remembering words or getting your words out? Do you have numb feet, pain in your feet tingling itching in your feet or hands? Do you have trouble walking, or with balance? Are you depressed and unreasonably anxious? Do your teeth hurt, do you have sores in your mouth? Sleep issues? There's a lot of symptoms that go on with this condition. I don't know how old you are but premature gray hair is also a symptom.

We are here to help you, so feel free to write a longer post with more details, it's perfectly okay.

[Kennyatw]

Yes it's normal. Mine was 340 which isn't good but I'm not doing the injections. But I just discovered that I have a full bottle of the 1000mg B12 pills so hopefully they will work

[Litatamon]

Some helpful links about some general misconceptions, how testing during treatment is not the right move & how safe b12 is at high levels-

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

Make sure you are not around a doctor who mistakenly thinks "all good now" when you are in normal range. When you have an unfixable absorption issue it simply does not work that way. You have to continue to have supplementation/shots.

[Altcrew]

Hi there, yes that is normal.

[Cherylclaire Forum Support]

Very low B12 levels such as your's would suggest pernicious anaemia (PA) if your problem is non-dietary. If you eat foods rich in B12, then there must be some problem with the process needed to turn B12 from food into B12 in your cells and tissues. It is a complicated and little-understood process, with plenty of room along the way for error. Flaws in the sequence that can't always be located.

Pernicious Anaemia:

Getting a PA diagnosis can be difficult as there is no true PA test as such. The closest that is available is the intrinsic factor antibody (IFab) test, which will be positive for only about 40-60% of those with PA. Several tests are needed sometimes to get a positive result, which has an excellent 95% accuracy guarantee. The problem lies with the fact that this relies heavily on a GP's surgery recognising or understanding these test percentages -so often on this forum we hear of GPs believing that a B12 deficient patient has had a PA diagnosis ruled out on the basis of a single IFab test. Until a better test comes along, this is what we are stuck with, so it is important that your GP understands the limitations of a result before requesting this test.

And equally important that, should you get a positive IFab result, you ask for a printout or copy and keep this valuable piece of paper safe !

Functional B12 deficiency:

I struggled with 3-monthly injections, symptoms were worsening so I returned to the GP. Unfortunately, the locum GP I saw told me that my B12 injection due straight after the GP appointment would NOT affect my B12 blood test result. Why I believed that, I'm not sure now - this was in 2016 - but I had the injection and off I went to the hospital and had my serum B12 tested. Of course, it was high (over the measurable 2000 ng/L) so nothing changed.

Two months later, I was worse - more blood tests and my serum B12 came back at 860 ng/L - still over the normal range (locally 197 ng/L to 771 ng/L) so nothing changed.

Two months after that, my GP rang me and said she wanted to restart my B12 injection frequency at two injections a week, give me 3 months of ferrous sulphate and folic acid, and send me for more blood tests: most crucially, a methylmalonic acid (MMA) test.

The MMA test result showed her that my MMA was raised, despite the B12 injections and high serum B12 results (over 2000 again). She gave me a functional B12 deficiency diagnosis, confirmed by the testing laboratory. All other possibilities were ruled out: renal problems, small intestine bacterial overgrowth (SIBO).

My MMA remained raised for three years in spite of frequent injections.

MMA should link with the B12 in bloodstream and transport the B12 to cells/tissues - but if that isn't happening effectively, the patient will obviously experience worsening B12 deficiency symptoms despite the injected B12.

I now self inject frequently to ensure that this does not ever happen again.

I am certain that there are other causes of functional B12 deficiency, whether known and understood or not, but at least in this case it is able to be detected by simply measuring serum MMA. If B12 is insufficient, the MMA will continue to rise as it has nothing to link up with. Being unable to form that link well with injected B12 has the same result - so in this case, keeping B12 levels high allows sufficient B12 to reach cells and tissues.

Your B12 levels were very low, so whatever the cause, I'd imagine it will take a while to feel well. It is important that your GP looks for the cause though. There is no reason to check B12 levels after B12 injections have started - medical guidance advises against this. In my case, it was done to confirm my GP's suspicion that the injected B12 was remaining in the bloodstream with the MMA instead of moving on together - so I'm very grateful that she did this check.

I can think of no other good reason.