B12 results back - any advice on what the level 65 means please?

My B12 results are back and my level is 65 - but hte doc just said it was low - no reference as to how low.

He also said I had intrinsic factor antibodies and needed a B12 injection which I need to book with a nurse.

I know B12 is discussed here often so hoped someone would know what 65 means?

Also - is there anything else I should be taking / not be taking when I get the shot to make it work properly?

Also - is this hereditary - should I be getting my children checked ( so far they are very healthy and happy), and if not - how do you catch this ( tried asking docs if they could stop the antibodies and he said no - it was now a lifelong illness, tried googling but found no info on how you get this)

Thanking you all for your advice :-)

M

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  • Well assuming the normal ranges 65 is scary! How are you feeling???

    Did you have your folate levels checked? What about ferritin? If those are low and very likely they are with such low b12 results you need to make sure you supplement those otherwise you will have what happened to me. I had all three low,only given loading doses of b12 and it really didn't do much for me because the other levels were low too.

    If you haven't had the other things tested I would ask for them. If you have had them done then request a print out of the results then post them on here with ranges so that people can help you better.

    Oh and the fact that you have IF too it most likely means you have PA so you will have to be on b12 supplements (shots,sublinguals) for life.

  • Hi again, I went for my B12 injection today, and whilst at the docs got a copy of my results and there are reference ranges for normal listed as 197.00 to 866.00, so my 65 does seem a bit low.

    The nurse said she would book me in for 2 shots a week for 3 weeks ( such a lovely lady) when I told her the doc had no plan, and she told me she cannot give me more but I should insist on a haematologist referral, and surrepticiously told me that the surgery cannot say no to that request - so will do that and hope he reccomends more treatments. The nurse seemed a bit worried at my shaking and inability to speak properly, and did insist that I insist on the referral, so I think she agrees with the opinion here that I should try to get more treatments.

    Thank-you so much for your advice

  • Hi,

    I have been feeling overly tired for years now and have been at the doctors to check my thyroid ( am hypo) but they only do TSH and refuse to do any other tests as "you are already on levothyroxine" - they will not do FT4 / FT4 or thyroid antibodies, thye will nt do vit D, ferratin tests - I had to fight them to do the B12 test.

    They told me today that they had tested my B12 a couple of years ago and it was low, but they did not do anything about it at the time so guess I have had this for a couple of years.

    Thank-you for the advice - not sure the docs will do the tests now they have the B12 rsults back - they just wanted to get me off the phone this moring, no hopes of them doing anything other than asking me to book B12 injection.

  • It is very important that you start reading up about PA, as your doctor has already revealed his "ignorance" card. Start here:

    b12deficiency.info

    A level of 65 is very very low. And if you've been low before and they've ignored it, well, that's called medical negligence. And the doc is compounding his stupidity by not offering you the correct treatment as per the BNF section 9.1.2. You need a loading dose of 6 injections over 2 weeks. If you don't have neuro symptoms, this is followed by a maintenance jab 3 monthly FOR LIFE. If you do have neuro symptoms, the loading dose should continue at 3 a week indefinitely until no further improvement in symptoms. Then 2 monthly maintenance FOR LIFE. Do not under any circumstances accept tablets, you need injections.

    You must insist on tests for folate and ferritin, as your B12 injections will be wasted without good levels of these. Not just low normal, folate needs to be top quarter of the range, ferritin around 70 or 80. Ask for copies of all your test results, as well as the previous ones to see how low you were before. It is also a good idea to take a B complex, and eat lots of potassium rich foods, as initial treatment puts a high demand on potassium levels.

    Have a look at this page regarding what you need to do:

    b12deficiency.info/what-to-...

    Please come join here or here for more support:

    facebook.com/groups/1749289...

    pernicious-anaemia-society....

    With regard to your children, unfortunately there is a hereditary risk. Also they can be affected if you were unknowingly deficient whilst pregnant and breastfeeding. I give my kids supplements for this reason. More info on symptoms in children here:

    b12deficiency.info/children...

    H x

  • Hi Hampster1,

    Thank-you for your reply - I think I have seen your posts on B12 before, but as is always the way could not find the when I wanted to. I have joined the PAS here on HU, and posted - thank-you for your advice, I do struggle with the docs - they are so busy you just don't have time to think of the questions let alone ask them for more info.

    I am busy bookmakrking your links so that I can read them and then re-read them when I forget it in 5 minutes :-) I am hoping the B12 might do something about my brain fog, and hopefully do someting about my nerve pain and shaking.

    Thanks ever so much, it is so lovely to have people who know and are kind enough to take the time to share

    Big Hugs

    M

  • Healthunlocked PAS isn't a very active forum (sorry if I upset anyone, but it's true). If you can join the Facebook page you will find many of the main PAS website moderators on there (of which I am one), plus loads of experienced sufferers. The main PAS forum can be read without becoming a member and is full of useful information.

    Sounds like you do have neuro symptoms so you really need to get pushy with your doc for the correct treatment, take someone with you so you can't be fobbed off. Don't concern yourself with how busy they are, it's your life and health at stake here, they're meant to be there for you. I can't stress enough how vital folate and ferritin is, phone today and find out if they've been tested.

    H x

  • Hi,

    I have taken your advice and called and although at first the receptionist told me the doc had not seen the results so she could not tell me, I held my ground and told her I had just spoken to the doc this morning and he had given me the B12 at 65, so she gave in and told me the folate is 17.5 but the ferratin was not tested for.

    There was no range information.

  • 17.5 seems pretty good, although can't say for sure without seeing your range, or what units its in. Still best to actually get copies of all your results. And worth monitoring though because once you start on the B12 it will utilise folate and your level may drop.

    If you take a good B-complex with all 8 B-vitamins (not too much B6, less than 60mg) alongside injections this should help keep your other B vits in balance (folate is B9). And ask the doc to check ferritin next time you're in.

    If on a budget H&B Complete B is a good one to go for. If more money to spend go for Thorne Research Basic B Complex, or I take Pure Encapsulations B Complex Plus.

    The most important thing to remember is you need 3 injections a week until no further improvement in symptoms as per the BNF section 9.1.2, and the NICE guidelines. If you just have one injection now and then nothing for 3 months you won't feel any difference whatsoever, a drop in the ocean.

    These are the guidelines:

    cks.nice.org.uk/anaemia-b12...

    H x

  • What does 'PAS' stand for? Where is the 'main PAS forum' Also I can't find the Facebook page. Thanks

  • PAS is Pernicious Anaemia Society. Links to PAS and Facebook page are here:

    b12deficiency.info/very-use...

  • Can i just check before I make a big mistake....

    the vitamins I currently take have the following B vitamins and their amounts - all are listed at 100% RDA

    Vitamin A 800µg 100%

    Vitamin C 80mg 100%

    Vitamin D3 5µg 100%

    Vitamin E 12mg 100%

    Vitamin B2 1.4mg 100%

    Vitamin B5 6mg 100%

    Vitamin B6 1.4mg 100%

    Vitamin B12 2.5µg 100%

    I also take magnesium citrate, selenium and zinc currently.

    I have found the 5-MFTH folic acid online and am about to buy 400ug tablets to go with my B12 injections ( starting tomorrow) but it looks like I have enough B vitamins (bearing in mind I eat the others, thiamin and tiboflavin and niacin are in my breakfast cereal - and they should absorb normally - I am only producing antibodies against intrinsic factor?)

    I have looked at the vitamin B complexes available, one caught my eye as it has the folate in it ( the natural one) but the levels are way too high - especially the B12 level at 1000ug when RDA is only 2.5ug AND I will be having hte injections - here is the list of what is in the b complex:

    Vitamin C (as ascorbic acid): 40mg

    Thiamin (Vit. B1) (as hydrochloride): 60mg

    Vitamin B2 (as riboflavin and riboflavin-5-phosphate): 75mg

    Vitamin B3 (as niacin and niacinamide): 50mg

    Vitamin B6 (as pyridoxine hydrochloride and pyridoxal-5-phosphate): 50mg

    6S)-5-methyltetrahydrofolate (MTHF): 400mcg

    (elemental, as 800 mcg (6S)-5-methyltetrahydrofolic acid, glucosamine salt (vegetarian source))

    Vitamin B12 (as methylcobalamin): 1000mcg

    Biotin: 600mcg

    Pantothenic acid (as calcium pantothenate): 100mg

    surely these levels are far too high?

  • B vitamins are water soluble so any excess is excreted in urine. The only one to watch is B6, which can cause peripheral neuropathy when taken in large doses. This reverses however when you stop taking it. For this reason the PAS recommend limiting vitamin B6 to a max of 60mg per day. My B complex contains 10 or 20mg B6 I think.

    RDAs are for 100% healthy people with fully functioning guts and no medical conditions interfering with absorption. This is not really useful for people with thyroid disease and PA (usually have low stomach acid as well).

    You may well absorb the other B vitamins from your breakfast cereal but I doubt it to be honest.

    Research suggests that people with PA will absorb 1% of a B12 oral supplement via passive diffusion. In practice the B12 you may or may not absorb in this way will unlikely go any way towards relieving your symptoms, only the injections will do that.

    B12 is safe at any level and there is no upper limit set by the World Health Organisation or EU. If you had cyanide poisoning you would be given the equivalent of 5000 times an injection dose in one go IV, and this can be repeated if necessary. Babies born with homocystinuria are treated with B12 injections every 1 to 3 days for life, and this starts upon diagnosis usually within the first month of life.

    Why don't you do some more research before you buy so that you can get comfortable with the doses in good quality supplements? As it's the Thorne Research one I see recommended the most compare it's formulation to the ones you are looking at:

    thorne.com/Products/Vitamin...

    I hope this helps, H x

  • No, those levels aren't too high. The amounts in multivitamins are often titchy and you need way more. One of the side effects of being HT is that often you have trouble with absorption of vits and minerals. Don't be scared to take a much higher potency Vit B complex pill - the amounts in common or garden multivits won't be enough to keep your levels up between injections. And if it helps, bear in mind that B vits are water soluble, so your body will just pee out any it doesn't need! :)

  • Thank-you for the advice - I had a bit of a google, although my husband says my Google-Fu is weak, and found info saying you cannot and you can cause toxicity for vitimin B (read info on all of the edible ones) so have decided to go with your experience rather than mixed t'internet messages.

    I have ordered the one from a shop I use anyway (the amoutns are lsited above) and fingers crossed all goes well.

    I do have one dodgy kidney so always try to be careful not to give the one good one too much extra work :-)

    Thank-you for your help - I also tried asking my pharmacist today but he was not sure and pointed me at a multivitamin tablet on the shelf.

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