B12 deficiency and liver stores of B12

My doctor and I are still trying to figure out what's wrong with me. I have a lot of symptoms that sound like B12 deficiency but my blood results show that I have about 2 years of B12 in my liver and my B12 level was just over 500 (can't remember exactly). She said my folate was a little high and I have parietal cell anti bodies and thyroid anti bodies. I am going for more bloods tomorrow, including intrinsic factor this time.

I have been taking B12 5000mcg for a few months. When I take a B12 supplement (tablet or sub-lingual) they work for a few days then they stop working and my symptoms come back. I asked her why would I feel better for a few days and then it stops, she said "placebo effect?" I was not impressed.

I am wondering why do I feel like I have a B12 deficiency when I have plenty of it in my body? Does anyone have any ideas?

12 Replies

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  • Sounds like it could be a functional B12 deficiency because your body starts producing anti-bodies to the TC11 which transports B12 to cell level when the levels in serum are high.

    The only treatment where B12 absorption problems are involved - and precence of PCA would indicate that you have a problem - seems to be repeated treatment with high doses of B12 - like flooding the system with so much B12 that your immune system can't create enough antibodies to kill off all the TCII. This is probably what is happening with the supplements helping for a day or two but then the levels drop to the point where the anti-bodies take over again ... or that's the point at which they catch up.

    One study in Denmark implied that 30% of population may have this response to some extent.

    B12 is unlikely to be released from the liver if your serum levels are high .... and even if it was the recycling mechanism depends on reabsorption through the ileum - which is going to be compromised if you have PCA (parietal cell antibodies).

  • "I have parietal cell anti bodies"

    That is the reason. If you have parietal cell antibodies, it means that your immune system is attacking the cells that line your stomach. Those are the cells where intrinsic factor is produced. That means you do not have enough intrinsic factor in your stomach to absorb B12 through food. It also means that the B12 in your body cannot be recycled as it normally would through enterohepatic circulation.

    Your doctor should have caught this when your parietal cell antibody test results came back positive. If your intrinsic factor antibody test also comes back positive, you will have a definitive diagnosis of Pernicious Anemia. But, even if it doesn't come back positive, the presence of parietal cell antibodies indicate that you are not able to absorb B12 normally. That is the cause of the deficiency. The fact that your body can't really recycle the B12 that does get into your system also means that testing your serum B12 is basically useless. That test can tell you how much B12 (or B12 analogues) are floating around in your blood, but it cannot tell you how much is actually usable by your body at tissue level.

    I take a bit of issue with your doctor telling you that you have "2 years of B12 in my liver". That statement is not based on any concrete scientific evidence. The inability of your body to recycle the B12 that makes into your liver means that you basically don't have any store of B12 at all. You really don't have enough to last you 2 years.

  • Thanks for the reply, is there a reason I suddenly have parietal cell antibodies, or is just one of those things that happens for no apparent reason?

  • firstly could be a reaction to Helicobacter pylori? (common).

    prescription antibiotics kill (most of) them & the rest of the natural gut biome too... indigestion/IBS? - prescription PPIs lower the already low stomach acid (magnesium deficiency too) low B12 is common in non-meat eaters (gut bacteria digest meat & produce B12 etc.)

    nasties leak into gut.... across blood barrier - body naturally reacts... cycle of autoimmune disease(s)....

    just researching & guessing "disease begins in the gut"

    Stressors - heredity, environment/ emotion/chemical.

    Oh & I meant to say that 'serum B12' test what's in the blood - not what's active (to use) I got an active holotranscobalamin assay (£57).

  • Unfortunately, a positive parietal cell antibody test is not as specific as an intrinsic factor antibody test in diagnosing Pernicious Anemia. As Sparerib pointed out, there could be a few different reasons why you have parietal cell antibodies. Pernicious anemia is one possible cause.

    It's not always possible to determine the cause of the parietal cell antibodies, although it is certainly a good idea to rule out bacterial or parasitic problems. The main takeaway though is that damage is occurring to the cells lining the stomach and that should not be ignored.

  • Have you had your Vitamin D checked? They mimic the same kind of symptoms

  • B12 deficiency can mimic Hypothyroidism.

    Symptoms of both 'B12 Deficiency' and 'Low Thyroid' (Hypothyroidism) are very similar.

    You mentioned you had Thyroid antibodies Ktululady, did you have any other thyroid bloods done? like FT4, (Free T4,) FT3 (Free T3) and TSH (Thyroid Stimulating Hormone) ?

  • I'm not sure what she tested but she said my thyroid was fine but I might have a problem in the future.

  • the GP may well think 'fine' is reassuring but it usually means the TSH is higher than it should be - please obtain a print out to see (you are entitled to).

    A TSH over-range with Thyroid antibodies is usually hashimotos - and a trigger for GPs to treat.

    Some (Thyroid sufferers) find that going wheat or gluten-free helps dampen down the autoimmune response, takes awhile - personally VitD helped me.

  • "I'm not sure what she tested but she said my thyroid was fine"

    I learnt not to accept being told things were "Normal". I always get a paper copy of any blood results. There will probably be a charge for this. Even if they are "normal"range it can be helpful to see how close to the top or bottom of the range results are. In the past I have been told results are normal then found that some were not when I got paper copies.

    "I have been taking B12 5000mcg for a few months"

    If you are supplementing it will probably affect the results of any B12 blood tests. There are MMA, Homocysteine and Active B12 (transcobalamin) tests available as well as the normal serum B12 test..but the results would be affected by supplementation. Some people choose to come off supplements in order to get reliable test results but obviously this should be discussed with your GP. I wasted a lot of money getting these tests privately only to find out the results were probably unreliable due to my supplementation.

    I found it helpful to get copies of the following blood tests...serum B12, ferritin(iron), folate and the full blood count plus any others. There may well be clues on the full blood count. Look at the MCH and MCV results on FBC. High MCH and High MCV can indicate the possibility of a macrocytic or megablastic anaemia. Try googling "macrocytic anaemia". Low ferritin(iron) makes red blood cells smaller, low B12 and/or low folate makes red blood cells larger therefor if you have both low ferritin and low B12 and/or low folate your red blood cells may appear normal size and your GP might miss problems.

    My top tip would be to ring the PAS (Pernicious Anaemia Society). They are a source of info and support. If you leave a message they will get back to you.

    pernicious-anaemia-society.org Head office: 01656 769 717

    Lots of useful info in library section and the chairman's blog is good too. You don't have to be a member to ring.

    Recent articles and research have stressed treating symptomatic patients even if blood tests are normal. I found it helpful to emphasise any neuro symptoms I had.

    Has your Gp got copies of the following

    1)www.ukneqas-haematinics.org.uk/content/News.asp?id=46

    2)www.bmj.com/content/349/bmj.g5226 The summary points are useful.

    3) The recent "BCSH Cobalamin and Folate Guidelines" updated 2014 especially page 29 a diagnosis flowchart

    b12deficiency.info

    This website is very useful.

  • Thank you for your help, I will get a copy of my results today and do a bit more research before I go back next week.

  • My doctor just tested my for Helicobacter pylori and it was negative. She said she is going to refer me but she's not sure who to, she said she will probably start with the one with the shortest waiting list.

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