My daughter is due to get her IFAB result next week and should start injections then too. In the meantime I would like to try out high dose sub-lingual B12 - would 5000mcg once a day be worth trying? Or more? Or less?
We don't know what she can absorb and we were talking aobut her diet today and have come to the conclusion she eats a lot less meat than she thought. She also doesn't eat eggs or cheese (as dislikes). So may be dietary deficiency as well as anything else.
I have low B12 too and will use the left over pills myself.
Can anyone recommend a brand? (without lactose).
Thanks!
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Sneedle
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hello Sneedle, I chose ' Nature Provides B12 Liquid Vitamin Drops 3000 mcg Methylcobalamin plus Adenosylcobalamin (50ml) High Strength Bioactive Vegan, sublingual. Easy to use. Most natural product I could find (Amazon and Ebay), importantly no additives, lactose or flavours. I believe it works for me, I also self inject. Hope this is helpful. Best wishes to you and your daughter.
Thanks very much Wheat - that sounds like a potential supplement for me (I'm a bit low too) to bear in mind - my daughter doesn't like liquids for some reason so I've ended up with something by Best Naturals which is chewable.Out of interest are all self-injections 1000mcg? Do you have a PA diagnosis?
hello Sneedle, s.i. are in multi use vials (sarah myhill, 30 day expiry) or single use 1 ml glass ampules. There are 2 ml ampules; and Pascoe 1500 (strength) in 1 ml glass ampules. The nhs uk uses hydroxocobalamin but there are other types available. Dr. prescribe injections now @ 3 monthly intervals: which is totally inadequate for neurological symptoms. Best wishes.
yes, I only know of two types for injections. Note, I am new to treatment of B12 deficiency/P.A. There is a difference between countries and individual experiences. UK NHS prescribes hydro., tolerated by most; cyancobalmin has a small amount of cyanide, cheaper but can produce headaches, or not work for some. In depth review (of all types) found in Dr Chandry's Book ch. 3 Treatment. b12d.org/ Further down page is link to his book. or just add ' book ' to above web address.
5,000mcg is I think the highest oral dose normally available (although I have seen one with 10,000mcg). It would be suitable for treating a deficiency but some with PA find that tablets seem to be ineffective no matter how high the dosage.
If your daughter is almost dairy free and also eats very little meat than B12 should be a matter of concern, with a modest supplement of 100-250mcg being quite sufficient as a single daily dose if there was no deficiency. Of course, much, much larger amounts are used to correct deficiency and if PA or an absorption problems exists, no amount of oral B12 might make any difference.
It was not clear from the blood results that there was a B12 deficiency but of course this is very difficult to interpret. I would nevertheless remain open to other causes of the symptoms mentioned in the previous post.
When you say not clear there was a deficiency from my daughter's results, do you think that B12 at 45.2 (37.5 -188) is not suggesting a deficiency? As in, low but maybe not deficient?
She took 500mcg B12 in her b complex from March to end June. So I'm a bit surprised by her result.
Unless of course she isn't absorbing it. But that could be due to low stomach acid if she's hypo, right?
We're trying to rule things out and I'm hoping that oral B12 and then injections will rule B12 in or out as a cause of her symptoms. ie she'll improve with B12. If she doesn't then we have to plough on.
Then once B12 and Ferritin are raised along with her already good folate and D3, we are hoping thyroid hormones might improve. Or if they don't, then at least we will have ruled out the co factors and can look at thyroid levels knowing that the co factors are optimal.
This is the plan anyway!
I'm kind of expecting her to have some improvement with B12, but feel like it's not the whole story. Especially since I'm hypo too, and my mum is.
It's been a challenge figuring out the order to do things in.
If you notice any errors in my investigation and supplement plan, let me know!
B12 deficiency is extremely difficult to diagnose and although I have read many many research papers on it the last year and a half, the only thing I am certain of is that I am not qualified to rule in or out a B12 deficiency. I am not medically trained. It is a topic on which experts struggle and typically diagnose by symptoms and eliminating other possibilities. It would be unprofessional for me to pretend that I have the competence and knowledge to do so - I have enough knowledge to know that I cannot. The thyroid issues add additional complexity and I know nothing about those.
Since I posted she's had her GP appointment and GP was receptive to the information about B12 - thank you PA group! - so fingers crossed they will start loading injections next week.
Her ongoing symptoms are hair loss, bad fatigue, dizziness (esp when having to move her head quickly or tilt it down like emptying the dishwasher for example), bad short term memory. Sometimes tingling but not pins and needles. These are off the top of my head.
I think you responded about your own daughter's struggles when I joined a while ago, as there seemed to be some similarities.
The plan at the moment is to get her on injections, see how that goes, continue supplementing (as per Thyroid UK recommendations) and see if all this helps reduce her symptoms. Monitoring thyroid along the way as she is undiagnosed but it needs ruling out. If no or not much symptom improvement, start banging on GP door again.
I noticed in your tuk post that she is on folate. Supplementing folate without correcting b12 deficiency is dangerous. It is said to accelerate nerve damage. Granted we don't know how well oral b12 is working for her, but something to keep in mind going forward.
I would stop until she starts injections.
You might also wait to take any oral b12 until she gets injections, in case they decide they want to test more than just IFAB.
Regarding dietary deficiency. You say she doesn't eat much meat and no eggs cheese. But does she drink vegetable milk? Those are all (usually) fortified with b12.
Thanks for messaging esp re folate. I guess I'm in a pickle with the order of things...
I noticed in your tuk post that she is on folate. Supplementing folate without correcting b12 deficiency is dangerous. It is said to accelerate nerve damage. Granted we don't know how well oral b12 is working for her, but something to keep in mind going forward.
My daughter's Folate and B12 were first measured in March this year pre supplementing.
Her Serum B12 was lowish (381 in range 145-569) although not terrible. Her Folate was much worse at bottom of range (8.91 in range 8.83-60.8) so she started on that on its own, and worked her way up slowly to 1600mcg, while taking B12 500mcg in a complex. So I thought we'd covered the bases.
Then on retest in June, her folate had shot up to 45.4 but her active B12 was low at 45.2 and has triggered the GP to IFAB test. I think I remember you saying you can't compare the two types of B12 result, which does make things a bit tricky as nothing to compare.
I'm trying to figure out if I've gone about this the wrong way? I can't see how she could have done it differently but maybe I'm missing the point?!
She hasn't taken any folate for the last three weeks as we've been on holiday and she forgets. I'll tell her not to take any for now.
Could you point me in the direction of some info about it accelerating nerve damage please? She is quite scientifically-minded and likes to see evidence.
You might also wait to take any oral b12 until she gets injections, in case they decide they want to test more than just IFAB.
What other tests might they do and how do B12 injections affect them? Do you mean MMA for example?
She wishes she liked more B12 rich things but much makes her feel sick. Her milk is full fat but lactose free which she seems to tolerate pretty well. If in future she moves to veg milks I'll check with her about fortified ones.
Thanks for your help. Some of this may come back around for me too on my own B12 and Folate /Thyroid journey. Learning curve, ooof!!
Hi sneedle, i will post more tomorrow. But in case you're a night owl like me & need some nighttime reading here are a few links on the folate issue . There are many papers on this topic, here is a sampling :
And one more interesting paper that also talks about folate
ncbi.nlm.nih.gov/pmc/articl... 'Sensory Neuronopathy Revealing Severe Vitamin B12 Deficiency in a Patient with Anorexia Nervosa: An Often-Forgotten Reversible Cause"
Thanks jade_s, I have been looking but think I've maxed out my ability to take in research info for now. But I can show the links to my daughter at least!😀
Hi Jade, when you have time and energy I was wondering if you'd be able to get back to me on the the questions I have (in the post above the post above if that makes any sense😀). You seem to be incredibly clued up on B12 and its biochemical environs.
An added question I have is, I don't know which type of cobalamin the NHS injections will be, methyl, hydroxo etc. She has various methylation polymorphisms particularly MTHFR and MTRR and I'm wondering about her ability to use the injected B12. Do you know anything about this? Does it matter which type it is?
Hi Sneedle, short answer is that the NHS will use hydroxocobalamin and even if your daughter had a genetic b12 condition, that would be the preferred form. MethylB12 is not used in any country by default, as far as I know, and it's more unstable and difficult to acquire, and not generally needed. Both cyano and hydroxo will convert to methyl B12 in the body.
Cyanocobalamin is also perfectly fine, and is the one used in the US, Canada, in Belgium where I am, and several other countries. Our friend clivealive does not do well on hydroxo so he gets cyano. But the NHS's default form is hydroxo.
Now the long answer.
Most people have mutations especially in MTHFR. It is related to folate, not B12. I did an extended B12 genetic test and as part of it, they provided a list of the mutations and the prevalence in the population. Some of the more common MTHFR mutations occur in a large % of the population. For example, I am homozygous for the common 1286A>C mutation, and according to the report it occurs in 29.50% of the population. So it does not mean we will all drop dead if we take folic acid. It just means we might need to be extra mindful and keep a symptoms log. I took folic acid for years and it worked great. Only recently I again had issues so added in some folinic or methylfolate, and it seems to help a bit better. But this is basically all fine-tuning. I think you got some good info on MTHFR in this post healthunlocked.com/pasoc/po...
As for MTRR, even if she has cblE - the inborn error of metabolism related to MTRR - treatment will be hydroxo B12. Here is an example paper on this topic ncbi.nlm.nih.gov/pmc/articl... If she would have this issue, then you would probably want to visit a genetic counselor and they'd probably be writing papers about her And the treatment will be a bit more extensive e.g. betaine and possibly other supplements. However it seems that most of the people with these inborn errors have quite severe issues - eg seizures, homocysteine/MMA through the roof. For the rest of us, we just have to get on B12/folate treatment and monitor. For example, I have several heterozygous MTRR mutations with between 1.5% and 47% prevalence. I do nothing more than hydroxoB12 and the folate story as above.
A good detailed overview of all these genetic / inborn "Disorders of Intracellular Cobalamin Metabolism" is here ncbi.nlm.nih.gov/books/NBK1...
I assume you got your genetic info from 23andme or something similar? Those test only a very limited number of SNPs. If you truly suspect one of these genetic issues, there are extended panels you can do. They will sequence the entire gene and also find duplications, deletions, and larger mutated segments. The one I did is Invitae's "Methylmalonic Acidemia and Homocystinuria Panel" invitae.com/en/providers/te... but there are other companies. (Nothing of concern came up in my test, though many 'benign' variants, so I'm none the wiser after this test lol).
Thanks it does answer them (I think! Struggling at the moment to take things in).
I got the info from a Nordic Labs test a couple of years ago, for me and my daughter. Not anything like as comprehensive as 23 andme from what I can tell.
But as far as I understand from your reply, neither of us with our various methylation-related variants need to do any more than make sure we have methyl versions of folate (and B12 if oral). Is that right?
Both of us have so many non-specific symtoms impacting our lives that I feel bound to make sure whatever 'treatment' we have (diet, supplement) is as far as possible beneficial, and not making things worse by accident!
A further questton for myself - have you ever come across low B12 or folate causing intermittment 'hardening' of the lower abdominals - I get this from time to time but had put it down to anxiety (of which I have buckets).
I got up this morning and the lower part of my abdomen is stiff, very tense, and really hard to relax with breathing etc. You could bounce things of it! It will soften again at some point, but it's interesing that I have been off folate and B12 for about 3-4 weeks now (testing, then holiday when I forgot) and it's reappeared.
neither of us with our various methylation-related variants need to do any more than make sure we have methyl versions of folate (and B12 if oral). Is that right?
Notnecessarily. Some people react very poorly to methylated b12 & folate, makes them jittery, anxious. The answer, as with everything b12, is trial & error with a good daily symptoms log. Change only 1 thing at a time & let it sit for a few weeks.
For b12 you can get hydroxo b12 tablets. That's what i took for many years. Methylb12 made me feel horrible. But methylfolate is ok for me. It's all just guesswork unfortunately.
I have not heard of abdomen hardening specifically related to b12 but a new post will attract more answers. Could be something to do with the nerves in the intestines, low stomach acid, or b12 helping convert t4 to t3, or...?
I see re the methyl issue - you get bombarded with take methyl this and methyl that, when it may not actually be the most beneficial. Or it may be...Good to know though as we proceed, thanks for that info. SlowDragon recommends a natureprovides liquid which has adenosyl in and methyl, I'm eyeing that up.
So to be belt and braces about it (as far as is possible) you could in theory -
-not be on supplements, then
-test homocysteine and MMA as well as B12 and folate, then
-according to the results start a methylated form of B12, see what that does, then
-change to hydro if negative reaction, see what that does, then
-add in methylfolate or other folate form, see what that does etc.
One thing at a time.
But probably, it's too much hassle over a long period especially factoring in dose changes. But it's helped me figure things out in my head!
Yes I'll ask about the abdomen thing, it's weird. Low stomach acid always lurking in the background...I'm asking my husband to get Apple Cider Vinegar with Mother and some limes as I think you suggested oin a different post. Along with Kefir to replace bacteria obliterated by very strong antibiotics recently (severe finger infection - on holiday😭!).
That sounds like a good plan! Yes unfortunately it may be a bit of a hassle but if you keep track of symptoms in a daily log, it is a lot easier to figure out what's doing what. You will very quickly see if you're an overmethylator. If you google symptoms of overmethylation there is a lot of (weird) stuff written about it but I think feeling jittery and more anxious are common.
It took me a few years to figure out what worked but it was more like fine-tuning, after starting injections that is. For example, I started on hydroxyb12 injections but no folate (everyone was adament it was not needed if levels were fine. well not in my case). Anyway I improved quite a lot anyway! But hit a plateau after 4 months. Joined one of the facebook groups and started taking high doses folic acid. That worked well for a while. Decided to try cyano, which i can get at my local pharmacy. After a few days felt worse, so switched back. I had a bad crash in between and had to increase B12 injections, and have not been able to reduce since.
Things continued improving but at a slow pace, as would be expected with severe B12 deficiency. Would periodically regress. Tried methylfolate and it seemed to work better but it was difficult to get. Went back to folic acid but what I could get locally, it wasn't working. Ordered a bunch of different forms from iherb, and found one without cellulose which worked. Deduced that tablets with cellulose were like taking sugar tablets. Went on for another few years like that, slowly improving with the right folic acid and sufficient B12, finding that I could do more and more stuff. Still hit pleatueas or regressions especially when stressed, travelling, doing more social stuff, or high temperatures outside. But recovery was quick, so I knew it was temporary. Started working part-time (big accomplishment!).
Hit another platuea this year, folic acid seemed to stop working completely. Mental health stuff. It also affects how I can tolerate my thyroid medication, so it can be a big mess to figure out. Methylfolate worked but again difficult to get one without cellulose where I am. Found folinic acid and now back to getting better. Then started getting jittery. Found that taking my normal dose in folinic was too much, but I still needed something (based on symptoms) so tried splitting half folinic and half folic, and think I finally found my sweet spot. Probably would need to do the same with methylfolate. I'm OK until it again stops working LOL. But now I know what signs to look out for and what I might try next.
I may be a very unique case LOL. I don't know if that helps at all. Just to say it's not like a switch, one thing is great and the other is crap. You will likely see improvements on any of the forms, if you are deficient, but it's finding the one that makes you feel optimal. Did I mention, keep a symptoms log?! LOL.
I'm so sorry you've had to go through it. I wouldn't be surprised if we oscillate between over- and under-methylating. I will keep coming back to what you've written as I learn. Thanks so much for your willingness to share your information-story- journey (the latter two words so overused I hate using them but have rammed it all together to attenuate the effect). It is really appreciated.
Thanks it was a bit of a nightmare (infection following removal of huge wart/verruca, can't be sure of the origin of the infection) using healthcare abroad where everything is different (let alone the language), doctors sucking in their teeth when they saw my finger, debridement and lavage because infection heading for the bone. That was the first day of holiday....😱
Much better now though, I would never diss antibiotics, they saved my bacon!
Kefir, I've never tried it but love cottage cheese so if it's anything like that it'll be a pleasure.
Thanks Nackapan, her Vit D is 150 hurrah, her folate 45 and ferritin is a complete confusion as NHS test says 29 (15-300)ie. low, and Medichecks says 66.4 (13-150) ie. definitely higher.
I pointed this out in my letter to the GP who apparently didn't mention it at all to my daughter (we were still on holiday at the time so I couldn't go to the appointment) . Either way I suppose she needs her Ferritin to be higher.
Iron also a confusion, my daughter can't remember anything abut iron being discussed. I sent a copy of the Iron Panel in hoping the GP would say something. But my daughter's short term memory is not good, so...! As far as I can tell from feedback here and TUK, she is not low on Iron.
She has a follow up appointment with the same GP at the end of July so I plan to go to that one and fill in the gaps.
morning Sneedle..you could try the “better you” brand of oral sprays ,you can get from Amazon,she may get on better with them. Best of luck with IF results hope all goes well.
Thank you MrPeacock, I like the sprays (for my own use) and Better You seems to be recommended a lot, so I'll bear it in mind. At the moment my daughter is saying she doesn't like sprays (she is possibly on the autistic spectrum and many things are problematic) but is willing to try sublinguals so we're going with that!
Thanks for your 'Good luck' wishes - I'm not sure whether a positive IF result will be good or bad news at the moment - a common state of mind prior to results, I'm sure!
Thank you for reminding me - I read this somewhere but it must have got drowned in the deluge of information I've been taking in!I did read somewhere about b12 deficiency even causing autistic/autistic like traits in some people (it was a study but no idea where on the net it lurks).
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here are a few links on the folate issue . There are many papers on this topic, here is a sampling : 
And the treatment will be a bit more extensive e.g. betaine and possibly other supplements. However it seems that most of the people with these inborn errors have quite severe issues - eg seizures, homocysteine/MMA through the roof. For the rest of us, we just have to get on B12/folate treatment and monitor. For example, I have several heterozygous MTRR mutations with between 1.5% and 47% prevalence. I do nothing more than hydroxoB12 and the folate story as above. 
Daughter diagnosed with b12 deficiency result was 109
Update on my Daughter
Posting for my daughter
B12 deficiency daughter with blood blister
Could it be the brand of b12 that is causing my problems 
