Advice on supplementation amounts

[LynneG]

Hi, I wonder if anyone can give me advice on B12 supplementation.

I am trying to get my B12 level up high because of neurological symptoms. I Have been taking Jarrow Methyl B12 5000mcg sublingual one per day approx 3 months

My recent blood test result

Serum B12 1142ng/L (197-771)

Folate 10.2 ug/L (<3.9 deficient)

I had been advised on here that unless B12 gets above 1000 then healing and repair will not happen. So I am happy that I am over 1000.

Symptoms not any better, but expecting it to take a long time.

I thought perhaps I should reduce supplementation to 1000 mcg tablet per day, now that my B12 is over 1000ng/L and I wondered on your thoughts?

Having 5,000mcg tablets in and still left, I tried this last week to take one 5000mcg once every 5 days but I didn't last and on the 4th day decided to take another because tingling/burning in hands moved up my arms and burning mouth noticeably worse with this reduction, than had been. Although I wouldn't have said there had been any improvement with supplementation if had been asked before this. I guess you learn to live with symptoms and don't focus on, so can't judge and then when worsens you notice.

I haven't had my Active B12 taken recently (cost - really ) and result last time was confusing as showed Active was an abnormal high proportion of the total serum B12. Instead of being the normal 20-30% of total, it was about 50%. Was it building up and not getting into cells? - no idea. My GP wanted to refer me to a haematologist to discuss this and symptoms months ago - but the dept were having none of it and rejected the referral. So I am on my own with this.

Any advice would be really appreciated

[Gambit62 Administrator]

LynneG - I think the advice you were given was on the TUK forum rather than on this forum.

As Hidden points out it isn't based on any real scientific evidence - and seems to have come as a quote totally out of context and rather unhelpful as a consequence from 'Could it Be B12' by Sally Pachalok. It is a comment that relates to the average levels that people who are being treated for B12 deficiency find that they need to maintain to feel healthy - though it is only an average and it does vary wildly - must do because my levels need to be well over 2000 for me to feel healthy. This is at least in part because some people respond to high levels of B12 in serum by shutting down the mechanism that allows B12 to pass from your blood to your cells. The ratio of active B12 in your blood would imply that this is happening to you - and the most likely cause is the supplementation raising your serum levels.

Serum B12 cannot be used as a single measure - it tells you what is happening in your blood - not what is happening in your cells. If you are being treated what counts is the symptoms that you have and not the test scores.

[LynneG in reply to Gambit62]

Ok, thanks Eaoz. And many thanks Gambit for replying so quickly.

Not sure I fully understand Gambit. May I run this through with you?

So it is symptoms that count.

So one thing that I could do therefore is to keep taking 5000mcg per day and hopefully symptoms may get better eventually as my B12 levels eventually have an impact on my symptoms?

I presume that deficiency has taken it's toll over the years

B12 191ng/L in 2011 (range now 197-770) since that period have learned that even for people with no health issues, should be top of the range or higher for optimal brain /nerve/heart health

So if damage occurring re deficiency for many years, may take years to heal from the damage. So keep taking the 5000mcg per day as obviously absorbing.

Is it ever wise to take more than 5,000mcg per day to get there quicker.

Someone on here said that they took extra 5,000mcg just before going into a meeting (to enable to focus better I think)

I ask because my memory is definitely getting worse since all this became noticeable and hit my awareness 6 months ago, because I suddenly got burning mouth again but badly and can't ignore that! memory and tingling in limbs and other stuff you can fob off/put out of mind.

But now if distracted I can forget what was doing. Eg put a pan on the gas, dog barks/phone rings - I totally don't remember pan again unless walk back into the kitchen and notice it, then I remember. Get distracted when locking door, say drop dog's lead, pick lead up, have been distracted from task and so walk away leaving key in door. Don't notice until back from walk and key not in pocket, think I have lost it! walk to the door and there it is still in the lock. This is frightening.

This is the bit I am lost with

So are you saying Gambit that as you don't start to feel well until say over 2,000 that you presume your functional situation is due to this mechanism that shuts down B12 getting into cells when serum B12 levels get high. And the way to combat this it seems is to go higher still and symptoms will then be helped because eventually this mechanism (protective or faulty) will be overidden by the high levels and some get into cells? Just keep going until symptoms start to get better?

Or are you Not implying that you are an example of this mechanism.

Just possibly that I am? And that because of supplementing, I have forced my B12 too high and a protective mechanism has kicked in stopping Active B12 getting into cells?

But I first had symptoms of burning mouth 6 yrs ago (and slight memory/forgetfulness that everyone puts down to age wrongly)

So the burning mouth made me see GP and I asked for B12 test as googling said again and again Burning Mouth/B12 deficiency link.

My result then was absolute bottom of the range at 191ng/L but I didn't see result, the GP just said normal. So I had not been supplementing then ever, but had symptoms.

So supplementing not the original cause of my symptoms.

When this January my Active B12 was abnormal high, I had been supplementing but my serum B12 was only 392 (but pmol/L which I think maybe about 500ng/L)

agghh sorry this is so confusing. I can only appologise, so sorry but I need to get it right - i have no other help. My GP doesn't understand B12. My GP now must think I am a hypochondriac - judging by the tone of referral letter to haematology (which I asked for a copy of)

I hope what you are saying is that in some people when they are trying to address their symptoms and so raise their levels that this mechanism kicks in and they are the people who have to get their levels so much higher it seems to overide this and get B12 in cells so can start to heal and symptoms subside hopefully?

Are you one of these people who's Active is high/ building up and not getting into cells? If so this would certainly reassure me that you can override and can get healthy again.

My GP will just say to me - your serum B12 levels are far too high above range, stop supplementing

Thanks Gambit so much for your time

[MariLiz]

Are you supplementing ferritin, folate and VitD as well as the B12? We need all of these in order to use the B12 we are taking. I've also heard taking a good BComplex tablet will keep all the B vitamins in balance.

[LynneG in reply to MariLiz]

Hi MariLiz,

Yes my D is at 137 nmol/L.

Ferritin is a problem as in my opinion it is too high at 139, and I thought it needed to be under 100 to be safe, but I have RArthritis (no drugs) trying to keep inflammation down (CRP 5) but serum is iron just in low normal range, so I believe because of inflammation my iron is kept in storage so as not to feed perceived threat of pathogen infection. So difficult to know what to do about that other than try like mad to reduce inflammation, which I really try to do. I got CRP down to 1.9 but since these symptoms started it has gone back up to 5. Not too bad as it was 18 before I cut out gluten and all grains.

I was taking a natural liquid fermented B complex that didn't have high B12 but someone told me that highish B6 I think it was can cause symptoms so I haven't continued with for months and was thinking of starting a B complex again in addition to the B12 because like you I think all the B vitamins are better than isolated ones.

My folate in March was measured at >20 but now 10. and hope I can keep ok with folate rich diet - Thanks for any insight

[Gambit62 Administrator]

Lynn, whilst oral works for some people with an absorption problem it doesn't necessarily work for everyone. It is obviously working in terms of getting your serum level up but whether that means you have enough getting through to your cells is another matter.

I think of functional deficiency as being like a dam - the only way to get water down stream of the dam is to have the levels behind the dam so high that water trickles over the top. So, upping the amount you take until the levels in your blood get to the tipping point could work but using an oral route (and sublinguals are only marginally better than oral) is potentially going to be a very long slog. B12 isn't actually toxic in itself.

It may be that B12 is not all that is going on - and it is a pity that you don't seem to be able to work with your GP. Things you could ask for are the IFA test (but you would need to stop supplementing and a negative doesn't rule out PA as the test is prone to false negatives). You could also try one of the tests that can indicate what is happening in cells - eg MMA will be raised.

High levels of gastrin may be a better way of testing for PA but I don't think this is recognised as a test at the moment. However, PA isn't the only possible cause of problems absorbing B12.

It is also possible that B12 isn't the only thing going on - is your thyroid under control at the moment?

How long it takes symptoms to reverse depends on what mechanism is involved in the symptoms - if you have anaemia that will take a few months to reverse, if you have nerve damage it will take years and sometimes may not reverse at all.

I would recommend that you tackle the GP about the memory issues - if someone else has observed them and can go along with you that would be good as well. However, please bear in mind that one thing that can happen is that people get anxious and start noticing the memory lapses more - getting more stressed and leading to more memory lapses and this may not necessarily be a B12 issue.

Another thing - are you supplementing with folic acid/methyl folate. If you are using methyl folate it may be worth trying just folic acid and methyl folate doesn't suit everyone.

It may also be worth trying a different form of cobalamin (B12) as methylcobalamin also doesn't suit everyone. You can get sublinguals for other forms of B12 - methyl might help me with some nerve issues but it does nothing at all for my psychiatric issues.

[LynneG in reply to Gambit62]

Ok, thanks for your time again Gambit. Like your full dam analogy.

Yes, I have been thinking of getting a sublingual Adenosyl too - so I would be using up my 5000mcg methyl and in addition disolving in my mouth a 3000mcg Adenosyl tablet. But was worried if may be too much, but it seems not and I can also go for a 5000mcg mixed Adenosyl and Methyl. So I could use that in addition if I felt after a while that still not making progress with the 5000methyl and 3000 together and adding more may help.

I had in the past and when this all started in Jan taking a fermented vit B complex which contained a natural folate rather than lab made folic acid. But I haven't taken a complex for months. And presume diet is providing folate as was >20 and now 10.2ug/L. I was hoping the higher levels of B12 were using the folate or perhaps not as much folate in diet. I hadn't thought 10 was a poor number?

I make magnesium tea from banana peel because it is high in absorbable magnesium and magnesium is also relevant to B12 function.

Good idea to take someone with me to the GP - thanks.

In my opinion my thyroid is not great as my TSH has been rising for the last couple of years from under 2 to 3.53mIU/L but this last test showed 3.2 (test in the morning roughly same times but I know it fluctuates) but I know will not get anywhere with GP with that level. So I am trying to support my thyroid with homegrown measures LOL. Infra red lamp/ rubbing frankincense oil on neck. trying to read up on other measures.

Last Jan when had Blue Horizon active B12 test, I had Thyroid tests and It did come back with some antibodies - not high, well within range but have read we don't need any number above '1' for body to use for cell death. So from that info, mine are up and so have been loathe to use iodine supplement.

TSH 3.53mIU/L (0.27-4.20)

Total T4 98.0 nmol/L (64.5-142

Free T4 16.83 pmol/L (12-22)

Free T3 5.14 pmol/L (3.1 - 6.8)

TPO abs 19 KIU/L (<34)

TG abs 12.1KU/L (<115)

Not had the MMA test as GP told by haematologist that only haematology could order. But they rejected referral on serum B12 level grounds. Even tho symptoms had been described in referral. I had mentioned guidelines (as kind, knowledgeable people on here had given me links) which is what influenced GP to refer. Her referral did however state - self diagnosing and lots of paperwork (which I had not had to show her but she could see I had) so hardly surprising rejected apart from the list of symptoms in the referral being ignored by them.

I did complain verbally to the Patient Representative System , is it ? stating haematology had ignored their own guidelines by rejecting my referral on B12 serum levels and not considering symptoms. But didn't get anywhere. Too stressful when not well to take further

But to be fair to GP she did then asked for tests I mentioned, that both came back negative

Intrinsic Factor antibodies

Paretial cell abs

So she asked then for a peripherral film screen of blood cells (which had been mentioned to her by a haematologist originally before referral)

Blood test 30th May results

ANA (Mouse Block) Negative

Mitochondri antibody screen test Negative

Anti Smooth Muscle Ab Negative

LKM Ab Negative

No idea really what they are but appears comprehensively negative lol

I just asked for print out. Not seen GP

My other annual tests done at same time

Full blood count shows

Haemoglobin estimation 125 g/L (110-147) (which is lower than usual)

MCHC 330 g/L (335-370) always abnormal low

MCH 27.8 pg (27-33)

So my haemoglobin content of red blood cells doesn't look great. Which I connect to B12 issues as B12 is involved in making Haemoglobin.

But all just marked up as normal

What did surprise me is that the above full blood count results are a little worse than previous even though serum B12 has now risen to 1142 ng/L

[Gambit62 Administrator in reply to LynneG]

B12 deficiency causes macrocytosis in which cells are larger and rounder than normal - it isn't involved in the making of haemoglobin - it is involved in the generation of healthy red blood cells

the MCH and MCHC are indicative of an iron based anaemia rather than a B12 based anaemia. This could be indicative of an absorption problem.

folate isn't stored in the body so is responsive to amounts in diet - and will drop if you have an absorption problem that is stopping you absorbing B12.

Do you have any problems with acid reflux? if so may be that you have low stomach acidity as symptoms of low acidity are pretty much the same as those of high stomach acidity - low stomach acidity will cause problems absorbing nutrients generally from your food - which would explain the iron deficiency.

Have you been tested for coeliacs and h pylori?

[LynneG in reply to Gambit62]

Hi Gambit, So sorry for replying so late. Lots going on here. My dog has/maybe has not bone cancer. But if am honest that is not the reason. I am just procrastinating - is that not a symptom of B12 def? LOL. I am happy , go out of my way to help others purposely but just don't want to look at my own issues. I feels as though there is nobody out there to help me - GP route useless and don't have £1000's to spend on private Functional Doctor.

I have been gluten/and grain free for 6yrs+.

My mum died of coeliac disease and it's many complications, brain lesions leading to loss of autonomic function in the frontal lobe, so loss of ability to know how to put one foot in front of the other, severe vertigo all leading to dementia symptoms and pancreatic cancer. With hindsight I also now recognise that my mum was probably B12 def, I recognise many symptoms of but she was never checked to my knowledge

My Dad had B12 inj from age 50 when he became aware of B12 deficiency complications when his mother/my grandma developed Parkinsons and they found she had PA.

My mum's sister had stomach wall cancer and their mum lived on Milk a Magnesia the antacid of the day.

My sister suffers from extreme bloating and digestive issues and has had 3 endoscopies for coeliac diagnosis but all negative - which is the fault of the poor test/60 gluten proteins known of and NHS test for 2/similarly newer blood test 2 antibodies, no wonder 75% are false negatives

One grandad was killed in the war and my other grandad died at age 65 of Rheumatoid arthritis - an autoimmune disease and known to be connected to Intestinal permeability and particularly wheat lectins and gluten.

And I was diagnosed with RA 22yrs ago.

So a happy, unhealthy family history.

So yes I am aware, and have learned from the history of my family issues. So I now eat a good functional nutritional diet without grains of any kind, or dairy except A2 butter and no legumes. I have to do this as chose to not take Rheumatology drugs proffered and treat myself nutritionally. So I take no medication/no over the counter meds either although I was bombarded with antibiotics most of my life re cystitis attacks, so again leaky gut causing, leading to RA when also nutritionally depleted no doubt following the birth of my second child and following a virus.

I do take food based nutritional supplements.

I was reading comments on this site re family histories and obv enlightening and our weak links in the chain genetically (Dr Tom O'Bryan) But I hate mainstream seeing the pattern because then would blame everything on your genes and shrug their shoulders and say it can't be helped, which is not true now science has revealed epigenetic influence.

Re blood cell size, I believe iron def anemia leads to smaller cells/ cancelling out the enlargement of from B12 - Every which way to confound my GP

I cannot take iron supplements as not short of iron, my ferritin is too high. I would presume that I have hepcidin hormone, sequestering iron into storage rather than allowing into cell re the inflammatory process of autoimmune. But to get a GP to understand or even follow this line of thinking is a waste of time. Because I go with what I presume is B12 def symptoms - as varied, many, across the board which B12 def would produce as involved in so many pathways. But then cell size comes up, so I mention the iron/aneamia of inflammation and immediately conversation is diverted away from B12 to iron which she determines is not the case because estimated haemaglobin on full blood count test is low but not bottom of the range. And they are unable to join up the dots with MCHC MCH/ MCV. In fact a couple of years ago my rheumatologist said to me when I asked him to interpret what the full blood count test values meant because I was worried about some abnormal low counts. He and a GP who I also asked to explain at a different time, both said - no kidding!, both said 'Oh we don't tend to look at those test levels, we just look a Haemaglobin Est and white blood cell count, all the rest we don't consider' There's our great NHS! So yes, my GP then thinks we have gone from B12 to iron deficiency (not that not connected) but you can tell she thinks I am verging on hypochondria then and it is then difficult to get back from to concentrate on B12. She did refer me to haematology which was rejected re blood level as I had been sporadically supplementing when an uninformed me some years ago found my B12 level was actual bottom of the range and supplemented as I had started with symptoms. Her referral tho, I asked receptionist for a copy of when my referral was rejected, the practice nurse said when having blood drawn, 'Oh that's shocking that they have rejected, the GP will now fight for you' - yes and pigs might fly! The referral had basically said, 'please can you take this patient off my hands, I don't know what to do with her. These are her symptoms, she is self diagnosing and feels she has B12 def and also Iron def. I would appreciate if you would see her for me. Hardly surpising they rejected.

She did Pcells antibodies and intrinsic factor as I asked her for - both negative

I don't have reflux, (altho I worry about my son having) I always eat lemon juice with eve meal or cider vinegar or both, luckily I love. Not because I have a problem just because I know it is nutritionally sound to do so. I am a great follower of Chris Kresser and have read most if not all of his work esp his GERD articles/podcasts

There is controversy over H Pylori now, as to whether it's more beneficial than negative. I suppose it depends on symptomatic issues. I don't have any digestive issues. So have left well alone. And I do seem to be absorbing - just possibly not getting into cells re neurological symptoms?

Maybe it's an additional autoimmune issue. But I always think these are just labels and human terms. That it doesn't matter what we call something, or what specialist compartmentalise as, that the body works on minerals and vitamins as co factors for enzyme pathway funtion and hormone, brain chemical production So if symptoms are a sign of failing brain then B12 is a huge primer for - no matter what specialist referred to. You just need to know the pathway is working. I know some people have genetic mutations on their methylation pathway - I never really wanted to go down that route. Have you come across Gambit, and do you know what they do about ensuring all is ok?

I thought B12 was involved in the generation of heamoglobin, sufficient to carry enough oxygen because I had read this, I will copy, I have been looking for, for a bit - You are so knowledgeable, what do you think?

B-12 and Hemoglobin

Vitamin B-12 contributes to hemoglobin synthesis by activating succinyl CoA, a chemical required to make heme. Succinyl CoA serves as a precursor for heme, and it undergoes several chemical modifications to eventually form an active hemoglobin protein. Without vitamin B-12, you cannot make enough heme to produce functional red blood cells. People with low vitamin B-12 levels develop vitamin B-12 deficiency anemia, which is characterized by blood cells poor in hemoglobin.

I have been taking 5000mcg of methyl and 3000mcg od adenosyl. Think I will add the other B vits too now. Symptoms may have almost imperceptibly improved and B levels well over 1000 last test, but it seems from posts, that takes a long time to get into this position and a long time to get out of it.

I have burning mouth as wellas hands and feet but also have really sore tongue and have had the odd mouth ulcer on tongue. But now have strange white spot in corner of mouth. And an on and off rash that had between fingers occasionally has now spread and stings and itches like mad, between all fingers and knuckles, but has spread to skin above top lip, base of spine and behind one knee. I am hoping this is not an overdose of B12? which I thought was impossible. I know a friend who was desparately abnormal low in vit D. He was prescribed and taken own D and has raised significantly in 6 months. But he says that his muscle pain worsened with taking vit D. I searched for reasons and all articles that I could find is this is what people find as the bones are remineralising with system being flooded with D. Do you think the same can happen with B12 - rash some detox symptom?

Thanks Gambit for being there

Thanks for being very patient with me in reading this post. It has been very therapeutic for me LOL