Results back today B12 level is 315.......... Could this be pernicious anaemia?

Hello there. I have a constant tingling tongue. Won't go away which I have posted about before. Today I got some blood levels back and this is looking too low. I see my endo on Thursday. I think I certainly need to supplement.

Any thoughts anyone.

[shaws Administrator]

Your Endo may be quite happy with 315 as it is probably 'in range'. Usually the top of the range is about 900 and we should aim for the higher end. You might strike lucky and he advises supplements. If not, click on the Amazon Link on the right-hand column of this page and buy methlcobalamin Vitamin B12, sublingual. It dissolves in your mouth and goes straight into your bloodstream. They are not too expensive. You cannot overdose as excess is excreted in urine.

[Hidden]

Or, if you want to investigate further, try and get some other tests done before you supplement:

b12deficiency.info/b12-test...

[Hidden in reply to Hidden]

I would add that my Endo ran the PA antibody tests for me (intrinsic factor abs, parietal cells abs) and also did the methylmalonic acid test (MMA), so since you're seeing yours on Thursday then you could always ask?

[Hidden]

Many thanks Shaws. I'm clicking on the link RIGHT NOW!!! X

[puncturedbicycle]

Hi joesmum. I think you recommended an endo to me many moons ago. How are you?

[Hidden in reply to puncturedbicycle]

Hi Hun,

I'm doing ok but am still struggling with awful neurological symptoms hence the B12 bloods. My endo thought it might be my calcium but those levels came back ok. Luckily I see him again on Thursday so I can have more in depth bloods done to check the possibility of pernicious anaemia.

I hope you're doing ok.xx

[puncturedbicycle in reply to Hidden]

Hope you feel better soon. xx

[Fruitandnutcase]

My B12 was low like that and my endo was happy with it but I supplemented with Jarrows sublingual Methylcobalamin from Amazon like Shaws says.

[Hidden]

And my serum B12 was 310, but luckily I had further testing done and was found to have positive parietal cell abs and elevated MMA. And in the early days of injections, which I was having 2 weekly once the loading dose finished, I took a methylB12 5000mcg sublingual every single day except on jab days. I also sometimes used the Boost B12 spray. I did this for about 4 months, and not once in all that time did I not feel absolutely desperate for my injection when it was due. The sublinguals did nothing. In fact when I stopped taking them I felt better. I have more recently tried hydroxoB12 5000mcg sublinguals and patches, just as an experiment, again to no effect.

I'm telling this story to really explain why I don't immediately recommend sublinguals, and don't recommend people taking them until they have exhausted all possible testing avenues that are available to them. Injections are superior, particularly where neuro symptoms are present (and by this I mean frequent injections, not the useless NHS 3 monthly).

There is not much research into the efficacy of sublingual B12, I'd like to see some. The only stuff I have seen is relating to sublingual versus oral B12, and they are deemed to be comparable (sublingual is not found to be superior):

ncbi.nlm.nih.gov/pubmed/146...

ncbi.nlm.nih.gov/pubmed/?te...

So if oral B12 doesn't relieve the symptoms of someone with PA or malabsorption, why do we think sublinguals would work? There is certainly the odd person who gets by on sublinguals alone, but there is also someone who nearly died from B12 deficiency despite taking sublinguals for many years, and is left with severe neurological damage (blood levels, including active B12, were of course normal because of the supplements).

And to throw another spanner in the works, it is a very individual thing as to what form of B12 suits best. Some swear by cyano injections, others hydroxo, and others methyl.

This isn't aimed at you guys, sorry! I just want people to realise how damaging it can be to start taking oral or sublingual B12 when you could actually need injections. And it's such a throwaway recommendation on this forum. Please consider other tests first if you are symptomatic.

And if you do decide to just go for the methylB12 sublinguals, then you should also take methylfolate and a good quality B-Complex as well (something like Thorne Research Basic B). It really isn't a good idea to take large doses of one B vitamin on its own, they're synergistic.

[Hidden in reply to Hidden]

Hi hampster1,

Thank you for such a comprehensive answer. Full of really useful information. I will ask for more in depth tests on Thursday. I'm hoping that they reveal something because this has been going on too long and it's frustrating. I have noooo energy. I feel so strange sometimes it frightens me.

Xx

[Hidden in reply to Hidden]

Sorry for hijacking your post a bit. x

[Marz in reply to Hidden]

Thank you hampster1 for being our reminder and guide x

[Hidden in reply to Marz]

Not really Marz! We're all just a product of our own experience, and my view is just one of many. People need to do there own research and make informed decisions before they take anything.

[Marz in reply to Hidden]

...of course - research is key. But it is good to have help from this forum....and be pointed onto meaningful websites/books/forums etc....

[Hidden in reply to Hidden]

This is very interesting Hampster, thank you. I've been supplementing with sublingual for months but despite my levels rising from 226 to 800, I still have a tingling left foot.. Are you saying that there could still be a problem even though levels have risen according to blood test results? I did the 'active' test too, and the result was slightly above their reference range.

[Hidden in reply to Hidden]

Yes I am saying that sublinguals don't work for some people. They do raise blood levels that's for sure, both the active and inactive kind, but we don't really know how much of that gets transported through to tissue level where it's needed.

And everyone will have a different experience of it, it is such a complicated process and we all have our own unique set of a) genetic factors b) co-existing illnesses and c) drug interactions affecting absorption and methylation.

Really the only marker of effectiveness for any form of B12 treatment is symptom relief not blood tests. So if you're taking B12 already you need to ask yourself has this helped my symptoms? You may well have had lots of improvement but you're still working on the tingling foot (it can take 2 years or more for nerve damage to repair). Or it may be permanent damage. And improvements can also be made by adding other things, as I said above such as a good B-Complex and Folate.

The thing you really need to look for is a worsening of symptoms. That's when you need to question if the sublinguals are working or not.

I have neuro damage on my right side moreso than my left. My right leg weakness and numb hands go away completely when I've just had my jab, and return when I need another. So I try and set my jab frequency to just before symptoms return. This is at least weekly. Because I went 6 or 7 years untreated this damage may be permanent, but I intend to keep up frequent injections to try and reverse it (as per the - universally ignored by doctors - BNF treatment guidelines). I'm really well at the moment (I have Graves, just stopped Carbi) but I should point out it's not all about B12. We have a myriad of deficiencies when malabsorption is at play. Mine were B12, folate, probably some other Bs, zinc, copper, magnesium, vit D, iron etc etc. A lot of these deficiencies have the same, or cross over, symptoms.

H x

[Hidden in reply to Hidden]

Thank you - this has given me lots of food for thought. I assume you're getting your weekly injections privately? My GP wouldn't consider injections at all.

S

x

[Hidden in reply to Hidden]

I do my own (B12 available OTC in Europe). I get 3 monthly from the NHS, I sent my GP lots of research and pointed out the guidelines etc. but he's ignoring me. I do see a nutritional doc privately. They both know I do my own injections, it's not something I hide.

[Hidden]

Thank you all for your replies. I think I'm going to get this investigated further and then I shall update you with the findings..........watch this space! Xx

[sazzyb]

Hi joesmum, I've got the tingling tongue too along with buzzing in my feet and legs which feels as though I'm standing on a vibrating mobile or something. My B12 is 277, ferritin 18 and folate is just under range at 3.9. I'm waiting for an iron infusion so hope it will settle something down at least. I first started with the symptoms 15 years ago, levels were poor then so GP started me on Vit B Co Strong. Stupidly I never went back for more tests and just bought my own supplements. (The tingling is caused by inflammation of the nerves which is caused by the deficiency. ) Hope you get sorted soon. Just to add, a friend of mine has PA. She was diagnosed in hospital after collapsing in her bathroom a few years ago. She had excruciating pain in her gut so her hubby called an ambulance. Knowing her she'll have been ignoring all her symptoms for months maybe even years.

[Hidden in reply to sazzyb]

These are very low levels sazzyb. Have you ever asked for injections or further testing for PA? Also Coeliac Disease? You must feel quite unwell.

[sazzyb in reply to Hidden]

Hi Hampster, you're spot on, I can just about make it through the day, have felt ill for some years. Had a blood transfusion in mid-90s due to low bloods then in late 90s GP put me on Vit B Co Strong due to very low B12 & Folic acid. Silly me never went back, just bought my own supplements. From what I've learned on here in the past few weeks I asked my doc if I could have an iron infusion because of low ferritin and he agreed. I've just this minute got a letter from the hospital, appointment to see Haematologist in May. (Last year's Coeliac test was neg) Roll on May!

[Hidden in reply to sazzyb]

Sazzyb I think it would be worth you doing some research to find out what your level was originally. You should never have been prescribed tablets unless your doctor was convinced that your deficiency was dietary related, are you a vegan / vege? You should have been properly investigated for PA.

Try and do some reading about this so that you're well prepared for the Haemo appointment - unfortunately they can be as ignorant as the next doctor. The Haemo will focus on blood and anaemia, so make sure you remind them that your low iron levels could be masking your B12/folate deficiency in the FBC results. And also that neuro damage frequently occurs in the absence of anaemia.

Would you consider stopping your supplements in advance of the appointment? It might be enough time to get a more accurate result if the Haemo runs his own tests (but difficult to say).

This is a page about testing:

b12deficiency.info/b12-test...

And lots of other good links all around the website.

[sazzyb in reply to Hidden]

No, not vegan, just not a red meat eater but eat lots of poultry, dairy & love my veg. I did wonder about PA in the past then forgot about it. I will now get my reading specs on and start swatting, I've just bought a book on it. Legs and feet are buzzing so strongly at the moment it wakes me up in the middle of the night & my back has been buzzing today, it's irritating. TBH I haven't taken any supplements for some time now because I got lazy. Thank you for all your input it's very much appreciated. x

[Triomum]

My b12 was 161 and has dropped in a week to around 130......no treatment yet....but fingers xd

[Hidden in reply to Triomum]

You should be uncrossing your fingers and demanding treatment. What's your lab range? Have a look here from point 5 onwards:

b12deficiency.info/what-to-...

Also a very friendly group over here:

facebook.com/groups/1749289...

[Flowers2]

Sublingual also did not improved levels. Dr won't inject despite family history if PA and my level being 312. Don't know what to do. Don't know if I even need supplementing. How would I know if I do?

[sazzyb in reply to Flowers2]

Hi Alit, have a look here, it says levels under 350 will give symptoms: stopthethyroidmadness.com/l...

[Hidden in reply to Flowers2]

Alit have a look at the links I posted for Triomum. Are you still on the sublinguals? Do you have any symptoms?

b12deficiency.info/signs-an...

[Flowers2]

Thank you sazzyb. Thats a great find. Explains everything so well and for all the tests we need too. Thanks x

[Triomum]

Thanks ham payer 1....

Got a call I can start b11...! Yay! Can't wait to feel well! Just need to see if there are any appointments this wk if if ill have to wait longer ;(

Been gluten free for CD for one month...so with that and b12... I might be like tigger and hyper by the summer! Well!! A memory of the past in desperate to return to!

Thanks again

[Hidden in reply to Triomum]

That's good, make sure folate and ferritin are at good levels, folate top quarter of range, ferritin around 80. If they are not (which is often the case) you need to supplement these to get the best from the jabs. Also eat lots of potassium rich foods. And make sure you get the right treatment - starting with loading dose of 6 injections over 2 weeks. So you need to book in for all 6 jabs - Mon, Wed, Fri for 2 weeks. Don't expect miracles, it can take a while to feel better, and you may even feel a little worse in the beginning. This will pass. Here is a link you might find useful, and hop over to the Facebook group I linked above for further support:

b12d.org/b12-injections-wha...