Lazy B12 question: I'm about to start... - Thyroid UK

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Lazy B12 question

LifeintheMed profile image
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I'm about to start supplementing with B12 but I know I've seen posts on here and in the PA forum about what type is the best to take and maybe I saw (could have dreamt it) that if you start with the wrong one, you can't change afterwards...

I have a script for 'B12' but what if I get it and it's not the right one?

I'm not very skilled at surfing these boards - hence the lazy question!

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LifeintheMed
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Regenallotment profile image
Regenallotment

I’m not aware of not being able to change.

I take methylated B12 and methyl folate orally

I inject cyanocobalamin B12 intramuscularly IM and subcutaneously SC, I recently ordered hyroxocobalamin B12 and asked a similar question on the PA forum (reply was that many people do both) also inject that either way. Having done both, my preference going forward (when my stocks are lower) is hydroxo SC it lasts a bit longer in my system.

Have you discovered if you have the MTHFR gene mutation that affects methylation? I found one in my ancestry DNA data by looking up the RS and alleles.

🌱

LifeintheMed profile image
LifeintheMed in reply to Regenallotment

I don't know anything about that gene...

Wua13262348 profile image
Wua13262348 in reply to Regenallotment

Oh Regenallotment! Please read pernicious anaemia, Australian site and b12 oils site extensively. Methylcobalamin and Adenosylcobalamin B12 injections recommended- never cyanocobalamin injections. Hydroxocobalamin B12 injections superior to Cyanocobalamin, but may not be good enough . I have bought the B12 transdermal ,methylcobalamin/adenosylcobalamin oils to apply to the skin. I haven't started the B12 oils yet as increasing Vit B2 first. Need enough FMN and FAD from Vit B2 , otherwise all varieties of B12 , even in injection form, can still result in inactive B12. Advised to supplement B2 until urine bright yellow. My urine still not bright yellow, so not high enough. You don't recycle your B12. Neither do I. Selenium and Molybdenum (especially important with sulfite problems ) also need to be at good enough levels, otherwise B12 biologically inactive. I will start molybdenum transdermal oil next week. Then I will start the B12 oils, rubbed into the skin.

Certain other things advised, with the reasons why, by Gregory Russell -Jones on b12oils site/perniciousanaemia- Australia site. Mega information re.B12 explained. He is a research scientist with about 25 years research experience in B12, I think I read. He explains that biologically active B12 has thyroid T4 and T3 levels taken into account by the body, before it can be biologically active. He explains that the active B12 test cannot measure biologically active B12, so that the term is misleading. It measures what is available for cellular uptake, I think, but in many people injecting even hydroxocobalomin, and all other forms, may well be biologically inactive. It is like thyroid, in that you can ignore the B12 blood test results , even if high, and go on how you feel. There are also a number of You Tube videos he has made where they are slanted towards autism, where B12 deficiency is always present. I think you will be blown away by all the information and knowledge on the sites. I don't understand why the oils are never mentioned re. B12 on Healthunlocked Thyroid and Pernicious Anaemia sites, unless members have tried them and found them wanting, and don't think they have worked? They have been available since , I think , maybe 2014. I saw them on the internet years ago, but was put off by the £30 ish postage from Australia. Once ordered, they arrived in 9 days. There was no extra duties to be paid on them.

I think you will find it mind blowing. I did, in a good way. Hope it helps you decide on next steps. LifeintheMed

TiggerMe profile image
TiggerMe in reply to Wua13262348

It'll be interesting to see how you get on with the patches and oil as there is very little clinical evidence that they have managed to create an effective patch yet... be sure to keep us informed

Wua13262348 profile image
Wua13262348 in reply to TiggerMe

I am not going to be using a patch. It is transdermal oil, in a pump action cannister, at 80% efficiency via skin absorption. Recommended daily application dose is double the strength used in injection ampoules, which are 100% efficient. It is oil consisting of the 2 active forms of cobalamin, methylcobalamin and adenosylcobalamin. Hydroxocobalamin is an antidote for harm which cyanocobalamin may cause . Neither are active forms.

vitaminb12deficiency.net.au is an Australian site, and the oils are from Australia.

TiggerMe profile image
TiggerMe in reply to Wua13262348

I'm trying to absorb all of this very interesting information from Australia whilst waiting for my brain to reboot after a migraine (note to self... never accept an unknown dark chocolate just to be polite!)

You obviously have a much better grasp of it all, could you explain (in simple terms 😬) why is topical better than using the active forms sublingually?

I understand why it is better than injecting the other forms 🤗

I'll keep reading but it's all beginning to swim a bit 😵

This bit was interesting...

Selenium is often supplied as selenomethionine in supplements. Experience has shown that this form of selenium is not actively incorporated into selenoproteins if a person is functionally deficient in vitamin B12. Supplemental selenium should be as sodium selenite.

One of the rare occasions when lab made is better than natural?

Wua13262348 profile image
Wua13262348 in reply to TiggerMe

I think these sites are gold -dust and Greg, Diogenes re-incarnated. Like you , I find it hard to grasp it all. The forum rightly emphasises the importance of Vit B12, folate, ferritin and Vit D. The sites provide the science and reasons why this is so.You ask why topical better than sublingually. I'm sure it is explained on the site somewhere, but can't remember what it said. I think it placed doubt on whether sub-lingual was effective or not. If you have a TCN2 gene mutation , the likelihood is that only injecting will be effective. I have one, though heterozygous, from one parent. It creates a transport problem at cell level, though I have tons of other mutations to do with B12 as well. Injecting gives 100% absorbency, but massaging in, with friction, the B12 oil, is reckoned to achieve 80% absorbency. A dose of 2000 is recommended to force it into the cell, much like Dippy dame and Greygoose with their thyroid hormone resistance , where they are using T3 as a battering ram, forcing T3 into the cells. I think 8 squirts is 2000. One squirt is 250 dose. The oils, I think, work out cheaper than injections.

All scientific studies published always do seem to use selenomethionine. I supplemented with a 200 dose of it for 120 days and my bloods showed me at c. 441.18% for selenium. Turns out my Selenium is up-regulated by a homozygous CBS mutation. I think I was using Nature Provides and Vitablossom sublingual B12 at this time at high doses. My ferritin was perfect , as was folate, b12 and vit d readings from the same blood test. I stopped supplementing selenium and unsupplemented , it is c. 142%. My ferritin has been steadily dropping since then (18/11/22). In July last year, it had halved, I think. If you are not B12 deficient, the selenomethionine will break down to methionine. My methionine was 32%. I think the sublingual B12 might have been effective, as my ferritin was perfect then. It has steadily dropped since, and hasn't been re-tested since 10/7/23. My conversion whilst taking selenomethionine (441.18%ish) was excellent, ( I think 3.19) but dropped right off when my selenium dropped to 142%ish. A CBS mutation (wish I understood it better), is to do with conversion of homocysteine to methionine and MTHFR mutations, amongst other nasties, which you do not have. I have 4.

I will likely have totally confused you . I am totally confused myself. I think what I am saying is that the sub lingual B12 may have been working. I am testing methionine again tomorrow, but results don't come back for 6 weeks. Unfortunately I won't get a homocysteine result. If methionine is lower than 32% then it might mean that the sublingual B12 was working, although my selenium is vastly lower for this test, which doesn't really allow a true comparison. I'm confused.

Selenite is hard to find, but the site states a brand that is available to order. I don't understand things well enough. Because my selenium was 441.18% when taking selenomethionine and conversion 3.19? , I think it was effective at converting FT4 to FT3, but wonder if FT4 and FT3 was actually as biologically active as it should have been . Maybe this is where his experience proves to him , as a research scientist, that only selenite makes it biologically active??? Mr.Google says selenite (or gypsum) is hydrated calcium sulfate.

The cost of 6 canisters of B12 oils worked out at £216.46, so £36 each including postage. Although Australian , you pay in American Dollars. You can avoid currency conversion charges with certain credit cards and get a perfect exchange rate, which I did.

How high was your B2 on your OATS test? Is your urine bright yellow with the Vit B complex you currently take?

TiggerMe profile image
TiggerMe in reply to Wua13262348

I do find the sublingual more effective than tablets but then I do have the FUT2 gene which can work against gastrointestinal absorption 🤷‍♀️ but then most of my wellbeing gene's are amber with immunity, stimulants and exercise all red!

Vitamin B2 (Riboflavin) 53 Glutaric * 0.04 - 0.36 H 0.37

* A high value for this marker may indicate a deficiency of this vitamin.

The 7mg in a single Igennus Super B creates neon pee along with a slight urgency, so I'm thinking this is a genuine high. Well Actually that I have just started contains only 1.5mg (107% NRV)

I find the Three Arrows heme iron very effective at keeping ferritin/iron levels on track

I wish you well with the oil, keep us informed, it's not cheap at £36 a week but then I imagine injectables are probably more?

Wua13262348 profile image
Wua13262348 in reply to TiggerMe

Oils not £36 per week . I think its 60 days, so 8-9 weeks , if dosing 2000. So £4.20 per week, at a dose double that of a typical 1000 ampoule for injecting. (plus cost of needles if injecting). Injections 100% absorbency, oils thought to be 80% absorbency transdermally, via the skin.

I wasn't tested on my gene panel for FUT2, so don't know my status there. Other gene mutations re. B12 are: TCN2: Transports B12 from bloodstream to cells. Availability of B12 to tissues may be impacted, as alters binding of B12 by transcobalamin and may have reduced concentration of bound transcobalamin in plasma. Need very regular injection of B12 as not recirculating. Associated with sub acute combined degeneration of the spine. I suspect I have this. I have 1 heterozygous mutation. CUBN: Cubilin, intrinsic factor-vit B12 receptor-genetic variability in the IRON HOMEOSTASIS PATHWAY. Involved in uptake of B12 from food. Cubilin is a receptor of intrinsic factor B12 and renal proximal tubule reabsorption of filtered proteins including albumin,transferrin, Vit D-binding protein and other plasma carriers. I have 7 homozygous and 4 heterozygous mutations here. CD320: Encodes transcobalamin receptor at cell surface to mediate cellular uptake of transcobalamin bound B12. Involved in B cell proliferation, immunoglobulin secretion and mutations associated with MMA (methylmalonic aciduria). I have 1 heterozygous mutation. LMBRD1: Converts cobalamin to 1 of 2 molecules, adenosylcobalamin or methylcobalamin. Defective lysosomal release of Vit B12, inborn error of Vit B12 metabolism. I have 1 heterozygous mutation. MMAA: May cause cblA, 1 of 3 complementation classes of Vit B- responsive methylmalonic acidemia (MA) caused by defects in ADENOSYLCOBALAMIN SYNTHESIS. I have 1 heterozygous mutation in MMAA. Methylmalonic Aciduria is generally a reliable indicator of B12 deficiency, except when caused by an inborn metabolic error. Mutation in MUT gene. I have 3 heterozygous MUT. MMA caused by homozygous mutations in at least 5 different genes, usually, MUT, MMAA or MMAB, MMADHC and MCEE. MMAB: CLLB mutations. Methylmalonic Acidemia . Mutations CAN CHANGE AMINO ACIDS USED to make MMAB enzyme. Can't properly process certain fats and proteins.CAN CAUSE A NON -FUNCTIONAL ENZYME WHICH PREVENTS BODY MAKING ADENOSYLCOBALAMIN. Take carnitine and low protein diet. I have 1 homozygous mutation + 1 heterozygous , never seen before. MMADHC: CBLD type: Can cause methylmalonic acidemia with homocystinuria . Causes production of a protein that CANNOT TRANSPORT B12 TO EITHER MITOCHONDRIA OR CYTOPLASM WHICH DISRUPTS ADENOSYLCOBALAMIN B12 and METHYLCOBALAMIN B12. BECAUSE BOTH FORMS OF B 12 ARE MISSING, THE ENZYMES WHICH NEED THEM, MTR and MTRR DO NOT FUNCTION NORMALLY. As a result, certain amino acids, fatty acids, and cholesterol are not broken down, and homocysteine cannot be converted to methionine. Homocysteine builds up, and methionine decreases. MMADHC can begin at any age. I have 1 homozygous mutation here. I have an MTRR mutation the genetic lab can't tell whether benign or not.

If have thyroid disease , inject B12. May need very,very ,very high B12. DO NOT USE CYANOCOBALAMIN.

TIGGER ME- You mention riboflavin and glutaric. I think on a past deep dive you have gone down rabbit holes with glutaric and been led to believe you may have a problem with Adensylcobalamin, in particular. My brain has had it for today.

I listed a variety of gene mutations that can cause B12 problems in this post so that others might benefit and make it easy for me to find in the future.

My G.P. is worried about my mental health as I am convinced I have a B12 problem. According to her, I don't. My paternal great grandfather , I believe died at 49 of sub acute combined degeneration of the spine caused by B12 deficiency, which also affected his heart. My maternal great grandmother died at 51 of Pernicious Anaemia.

Happy hunting!

TiggerMe profile image
TiggerMe in reply to Wua13262348

Just heading to bed I'll look properly in the morning... hopefully not 4am thanks to the dogs... I must have misunderstood I thought it was 8 pumps a day (with 60 per can) to get the correct dose?

Wua13262348 profile image
Wua13262348 in reply to TiggerMe

I was a tad confused, still am. Got it now. I had 8 squirts in my head. You had me out in a cold sweat! Thought it was mega expensive afterall.

One squirt is 1800mcg of Adenosylcobalamin plus 700mcg of Methylcobalamin, making up a dose of 2500mcg combined, and you can expect 80% absorption, being 2000 mcg . The order page states there are 60 doses in a bottle. The product page states 50-60 doses which is one squirt. Each squirt is 0.25 ml. The bottle is 15ml. There should , therefore be 60 doses per bottle. Call it a 2 month supply per bottle. At £216.46 per 6 bottles to optimise the cost of postage, this works out at £36.08 per bottle, which lasts 2 months. So, £18.04 per month. If assume a 30 day month, that's 60 pence per day. Just as well you questioned the 8 squirts!!! I'll have my work cut out to remember not to put it under my tongue.

Got confused as you can expect to absorb 2000mcg and I divided that by 0.25ml squirt and got 8 that way. The old brain 's not working too well at the minute. The site confused me as there is mention of starting children on a drop, rather than a squirt. They must have to squirt to get a drop, I would imagine. I know that methylcobalamin degrades to hydroxocobalamin if exposed to light, so supposedly if you don't use a whole squirt , what you have left will end up as hydroxocobalamin. Don't know if adenosylcobalamin degrades. Alternatively , maybe you lose the rest of the squirt. Seems like the kind of question Helvella may have an answer to. (my tagging not working)

Hip on Phoenix Rising that you referred to in an earlier post seems to have answered the question of why Thorne basic B has so much B3. It might be to counter the effect of the 400 mcg methylfolate so that you don't overmethylate.

TiggerMe profile image
TiggerMe in reply to Wua13262348

Phew 😅

TiggerMe profile image
TiggerMe in reply to Wua13262348

Came across this and thought you might find it useful... Hip seems to have some useful advice about countering possible side effects

forums.phoenixrising.me/thr...

Wua13262348 profile image
Wua13262348 in reply to TiggerMe

Thanks, Tigger. That was very kind of you.I read through that very same thing a few weeks ago, and got a lot of info and perspective from it. I read the whole thing as there was mention of CBS mutations in it too, and I have a double mutation there which up-regulates selenium. It is pretty long. The amount of info and quality of it on the Australian sites is fabulously informative, if you can understand it. I struggle to understand it all.

You were bottom of the range on your OATS test for B6. I think the sites tell you, for instance, that the active form of B12, adenosylcobalamin, uses Vit B6 and Biotin as part of its activation process, though I've maybe remembered it wrong!Before you did your Oats test, when your B6 was absolute bottom of range, you probably would be deficient in adenosylcobalamin specifically. I wrote it down and have mountains of papers where |I've written things down, and can't find it. I'm answering this post first, and then will answer previous question. It records the following information in a place where I'll be able to find it again, and alerts other members that they need to be aware of this information and keep it in mind , on their journey to try to regain their health. Vit B2, which makes FMN and FAD, absolutely vital to activate B12 biologically. Also to biologically activate Vit.D. Fad can be deficient if lack iodine,selenium, molybdenum as well as B2, and also needed for iron processing. Need Melatonin , and reduced if B12 deficient, and lack of melatonin leads to lack of myelination in brain, gut issues and food sensitivities, sensitivity to lactose and histamine and lack of maturation of gut epithelial cells and poor gut health.   Regenallotment You also need some lithium. I've been drinking San Pellegrino Mineral Water for the past week , as it has some lithium in it.

Your migraine , I think , is low B2, causing low or deficient, fmn and fad. This causes migraines. I have been having migraines with auras for past number of years. Your brother's dementia/alzheimers: Vit D blood tests , for instance, may show optimal levels of Vit D. Inhabitants of hot countries may show optimal blood levels of Vit D. Vit D is biologically inactive if the previously mentioned vitamins and minerals deficient (including B12), and if not activated, there is lack of myelination in the brain. TSH, FT4, FT3 and TT4 are also part of process. I have white matter changes in my brain. FMN and FAD needed to RECYCLE B12. Regenallotment and I don't recycle our B12 and it drops like a stone if stop supplementing.

FMN and FAD needed for iron processing.

I take one Thorne Basic B daily. It has 10mg of Vit B2. For the past week I have taken an extra 25mg B2 and am flabbergasted, in a good way. I am to take the B2 at a level that will turn my urine bright yellow, signifying that my body doesn't need it all. At 35mg B2, my urine is not bright yellow . Yet, a muscle at the top of my inner thigh which has had no tone since 2007, when I had to have back surgery for nerve entrapment, now has tone. My leg muscles and gluts (bum muscles ) are now working since I upped my B2. I am aware that my muscles are working, when previously they seemed non existent. I am hypermobile (Greg says caused by mother being iron deficient in pregnancy!), and part of this means muscle groups will just stop functioning properly. Jaydee1507 They will get stuck in contraction and not relax OR get stuck in a relaxed state and not contract. I notice a huge improvement in bowel urgency, stool formation and tolerance the past few days. I have had no control since 1995. I am hopeful that I may finally be able to resolve this. B2 seems to be key, not just for me, BUT FOR ALL FORUM MEMBERS. The Thorne Basic B seems to have an excessive amount of B3 at 140 mg. (10mg as niacin, 130mg as niacinamide). Pink Tribe Liposomal has 45mg and IGennus has 48mg. The sites say that Niacin B3 CAN LOWER METHYLATION. Its pretty much double dutch to me, but since I take Co Enzyme Q10 to provide 3 methyl groups( I think?!?), that much B3 seems counter-productive .

In the past, I supplemented Selenium to try to get rid of eye problems like sensitivity to light. I know now it is VitB2 deficiency that has likely been causing my eye problems, since deficiency can cause light sensitivity., migraines and auras. A lot of forum members seem to have migraines and auras.   helvella

I think   tattybogle has said in the past that she has been known to take Selenium intermittently. Possibly B vitamins not religiously? One of the things mentioned that it is vital to have a sufficiency of , is Selenium to biologically activate Vit B12. Since Vit B12 and thyroid hormones are inextricably linked for proper function, it MIGHT be a partial explanation of Tatty's widely varying thyroid blood readings. Enough B2 to provide FMN and Fad is non negotiable for proper function, and variance in B2 and Selenium intake would likely greatly affect symptoms and blood results. If B2 and Selenium intake erratic , thyroid blood results would also be erratic???? We need Tattybogle's brain to get to grips with the info on the sites, decipher it, and use her definite knack for giving easier to understand explanations that benefit the masses on the site.   humanbean and   radd and   bookish also spring to mind.

Without FMN and FAD from Vit B2, everyone on the forum will struggle. Vit B12, iron, Vit D, folate, vit K could, I think, show in a blood test as optimal but be biologically inactive. Uptake and processing of iron   FallingInReverse requires both active B2 and active B12. The active B12 blood test DOES NOT measure BIOLOGICALLY ACTIVE B12. There is not a test for this.   LifeintheMed

Bit long-winded, I know! The penny has only just dropped that both the active forms of B12 are actually co-factors. This is one steep learning curve!!!

TiggerMe profile image
TiggerMe in reply to Wua13262348

Wow Wua, so much to unpack here! I do have phases of doing a deep dive before adding any new supplements and then a few months later I'd struggle to remember the whys and wherefores but know they were needed at the time 😅 then need to take another plunge before reordering

So OAT results date back to when I wasn't feeling as well (probably ought to redo now I'm much improved) and I certainly acted upon low B6 result (having been using a B complex with pyridoxine) I've been sure to switch to P-5-P, also added in molybdenum and B2 though eased off on this as any B complex has enough B2 to give me neon wee, also added in a separate sublingual biotin... I've eased back on my B complex reliance as my absorption seemed sketchy of even the high powered Thorne Basic B so now swapped to a low powered liposomal liquid and boost specific B's

Interesting you mention melatonin linked with histamine and lactose intolerances, I did add SAM-e for a few months but noticed no change and as my sleep is generally pretty good didn't revisit this one... 🤔

CoQ10 I've found to be a great addition, yes aids methylation and like you say too much niacin binds to methyl groups 😬 so does seem counter productive

"Uptake and processing of iron requires both active B2 and active B12"

Is this maybe why heme iron is so much more effective at raising levels when other options have failed?

Let's see what the smart cookies mentioned come back with 🤗 I'm no academic my brain gets too full 🤯

Wua13262348 profile image
Wua13262348 in reply to TiggerMe

I'm not sciencey at all, dropped it at school like a hot potato! Don't really understand iron to comment on that. I got one of the molybdenum oils, in the form recommended, to massage in as I'm sure that will be needed with all the sulfur nasty genes I have. Its the MOCOS gene, that deals with molydbenum. I have 5 homozygous and 4 heterozygous mutations, there. The XDH gene, I have 4 homozygous and 1 heterozygous there.I also have a homozygous SUOX. Tip of the ice-berg. I just know that when I come to use the oils, my defective brain won't stop me using them sub-lingually by mistake, as I'm so used to taking various things sub-lingually!

I do the same as you, deep dive, make a decision , then can't remember why I did it. I think you understand more than I do re. the science, so bear this in mind when I'm commenting. I'm groping in the dark and trying to join the dots.

You upped B6 and this is an important co factor. It is key in CBS, but you don't have MTHFR. BUT, do you have mutations for MTR, MTRR or MUT?Since you added B2 after the OATS test , were you low, and how low?? You say any B vits give you neon wee. It is only B2, specifically, that gives you neon wee. I wonder if the fact that any B complex gives you neon wee, and you were low in it??, means you are excreting it as you can't metabolise it, rather than it being excess to requirements? Anyone know if that is nonsense or fair comment? Mr. Google says that , just as an example, that if had say, for example, Aspartate 238 mutation in Fad synthase Isoform 6, that "this increases specific activity of the enzyme by weakening the Fad binding. Before you supplemented with the GGG amino acids, did your OATS show a really low or really high amino acid that is a co factor for B2 and its subsequent onward metabolism to FMN or Fad??? Also , Mr. Google says that NADH (Nicotinamide Adenine Dinucleotide inhibits rate of Fad Synthesis. So, B3 seems to inhibit FAD SYNTHESIS. Thorne Basic B,as we have discussed, is really high in B3. Do we not want MORE FAD SYNTHESIS, and not less??????!!!!!!Your instincts seem to be spot on that you say you have dropped ,or lowered your B complex, and are boosting specific Bs. As a matter of interest , what levels did your OATS show for all your B vits?

I know you are not taking Thorne Basic B now, but for other forum members following advice ( me included) that Thorne is good to take, the amount of vit B3 it contains looks as if it could be creating a major problem re. B2, FMN and FAD which are CRUCIAL re. thyroid, B12, folate, vit D, VitK and iron. Anyone who is knowledgeable in this area care to comment???

TiggerMe profile image
TiggerMe in reply to Wua13262348

I've just realized we are carrying out this chat on poor old LifeintheMed's thread

I must admit since reading the book Dirty Genes I take it all with a pinch of salt as the book covers the fact that 'normal' genes can act dirty and vice versa so I do what I can with blood and urine results, which in themselves can be equally misleading so a bit of trial and error 🙃

LifeintheMed profile image
LifeintheMed in reply to TiggerMe

Hey, it's all very interesting - the thread invites it! :)

Wua13262348 profile image
Wua13262348 in reply to TiggerMe

I tagged LifeintheMed. She needs to be aware of the possibilities in the post. She is, at least, getting a full answer to her question re.B12 and the best one to take.

TiggerMe profile image
TiggerMe in reply to Wua13262348

She gets every reply as it is her post

Regenallotment profile image
Regenallotment in reply to Wua13262348

Didn’t know that! interesting 🤔 the cyano recommendation was from the PA site here. It’s been great for me, but I agree Hyroxo lasts longer in my system. But is way more expensive of course 🤦🏽‍♀️. I’ll have a read 👍

Wua13262348 profile image
Wua13262348 in reply to Regenallotment

Read, vitaminb12deficiency.net.au (Australian site) and b12oils.com. Any harm that cyanocobalamin can cause (especially if a smoker), Hydroxocabalamin is actually the antidote for. Neither are active forms of B12. The active forms are Methylcobalamin and adenosylcobalamin. The sites explain the necessity for certain minerals and vitamins to be adequate to be able to have biologically active B12. They explain things like B12 needing to be sorted out before Vit.d and iron., and Vit B2 before B12 can be sorted. They explain how MTHFR etc impacts. The info is absolutely excellent. If you want to stick with injections it is possible to get UK methylcobalamin to inject. It is supplied in powder form and you add sterile saline. This does not cover your bases as far as Adenosylcobalamin is concerned. The Australian scientist is basically an Australian Diogenes. He used to do an oil which was Hydroxocobalamin, but discontinued it as not everyone is capable of converting Hydroxo to the 2 active forms. TiggerMe

EDIT

The cost of 40mg dry powder methylcobalamin is £32 +vat + postage of £5.50. Cost of sterile saline on top. Don't know how this compares cost wise with the hydroxo you are using.You would , I think , be able to vary the dose up or down with this. I assume the ampoules , you need to use a full, set amount. I would imagine if you had the diluted powder you would have the option of splitting the dose also, if required, as well as increasing or decreasing it.

FallingInReverse profile image
FallingInReverse

When people ask B questions I’m compelled to share what I think is the best B post ever:

healthunlocked.com/thyroidu...

Compliments of Regenallotment, as it turns out!!!

LifeintheMed profile image
LifeintheMed in reply to FallingInReverse

It all just feels a bit overwhelming to be honest, I find it hard to parse the information I need

FallingInReverse profile image
FallingInReverse in reply to LifeintheMed

Fair point!

Are you looking for advice on whether you should supplement B… and if so , which supplements?

Or do you have another question?

LifeintheMed profile image
LifeintheMed in reply to FallingInReverse

I am going to start supplementing - the doctor has just written me a prescription for B12...but I'm just not sure about if all B12 is created equal.

She's also given me a prescription for really strong Vit D that apparently I only take once, every two weeks!

FallingInReverse profile image
FallingInReverse in reply to LifeintheMed

Since no one else has popped in I’ll tell you the decision I made for my daughter who needed to boost and maintain her B12 and the round out with a b-complex based on the advice of this forum.

I am not the best person for this : ) Esp when it comes to what’s different for people with PA. I have no idea about that.

If anyone can correct whatever I have wrong, please do!

 TiggerMe  Jaydee1507  HealthStarDust I know you’ve got great expertise here, and then  SlowDragon I think you always have succinct advice on how to start b12 and add a b complex?

That being said- my basic understanding of the different types has to do with the “methyl” versions … which has something to do with being the usable form… I think that that’s most important for people with a particular gene who actually are not able to covert to the usable form. So best to take the one that’s already usable. For example - we say get “methyl folate” and NOT folic acid.

What I chose - I know the other list is really detailed but in the comments you will largely find people who say what they chose.

I started my daughter on a daily Betteryou sublingual B12 spray, and then she takes Thorne Basic B complex twice a week.

If anyone else can simplify this for OP, please weigh in!

Jaydee1507 profile image
Jaydee1507Administrator in reply to LifeintheMed

Which type of B12 is the prescription for and what strength?

Why did your doctor prescribe B12 for you? Did you have some low blood results?

Are you vegan or vegetarian? Do you eat red meat?

LifeintheMed profile image
LifeintheMed in reply to Jaydee1507

Hi Jaydee,

Yes, I have fairly low levels i think 249 - so not quite deficient but getting low. I eat meat, eggs and dairy. At least two servings of red meat a week.

I've got the B12 now - its 'cianocobalamina' (it's in Spanish)

I have tested negative for coeliac, parietal vells and anti-intrinsic factor so not quite sure what's going on...my vit D is low too

Jaydee1507 profile image
Jaydee1507Administrator in reply to LifeintheMed

You havent given the range but that looks pretty low. If you're eating red meat then its more surprising.

Did they also do an MMA test?

It might be that you would benefit more from injections but see how you go.

Cyanocobalmin is the most basic B12, better to take methylcobalmin if you can buy it. You will need a high dose, minimum 1,000iu.

Once you've been taking that for 2 weeks then add in a good methyl B complex. The ones bought online are better than supermarkets or local shops. If you can find Thorne Basic B thats a good one but needs to be high dose. Compare the label I have attached which are the quantities needed.

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150. Most people need a minimum of 3,000iu per day.grassrootshealth.net/projec...

Hows your ferritin?

thorne B
LifeintheMed profile image
LifeintheMed in reply to Jaydee1507

Thanks.

I'm not sure what an MMA test is?

I've just ordered the Thorne B-complex and the Jarrow B12 (1000) that was recommended elsewhere on this thread.

The doc has prescribed me hidroferol for the vit D? To be taken once every couple of weeks?

Jaydee1507 profile image
Jaydee1507Administrator in reply to LifeintheMed

I think the hidroferol is a high dose vit D. When that is finished you will need to buy your own supply. Start with a 3,000iu D+K2 and restest after 3-4 months to check you're taking enough.

MMA is a methylmelonic acid test. Explained here: urmc.rochester.edu/encyclop...

The trouble with pernicious anaemia is there is no one guaranteed test. There are a number of different ones and nothing guaranteed to diagnose.

humanbean profile image
humanbean

I'm just not sure about if all B12 is created equal.

It isn't. There are four different kinds of B12 commonly available. They are :

1) Cyanocobalamin

2) Hydroxocobalamin (Note - NOT hydroxycobalamin)

3) Adenosylcobalamin

4) Methylcobalamin

To make it quicker to write the names, you could use Cyano B12, Hydroxo B12, Adenosyl B12, and Methyl B12.

Some info on B vitamins that is helpful - although it misses out the active form called Adenosyl B12. Both the methyl and adenosyl form of B12 are active which means they are immediately available to the body without requiring any form of conversion before they can be used. Not everyone can do conversion of inactive B12 very well, so its best to use the active form directly.

jigsawhealth.com/blogs/news...

For more information on the different kinds of B12, please read this link :

perniciousanemia.org/b12/fo...

LifeintheMed profile image
LifeintheMed in reply to humanbean

That information on the second link is super clear and useful, thanks

TiggerMe profile image
TiggerMe

Do you actually have PA or are your B12 levels just a bit low?

I have found that I don't absorb it in the gut particularly well so I take a good B complex tablet/ capsule which contain the methyl form ( though I am just about to trial a liquid B complex) and top up my B12 with a sublingual containing Methyl and Adenosylcobalamin so covers both bases and are the natural active forms with the other two being synthetic

This has worked well for me, I don't have the MTHFR gene mutation 🤷‍♀️

futurekind.com/blogs/vegan/...

LifeintheMed profile image
LifeintheMed in reply to TiggerMe

Thanks for the response. B12 lowish despite diet containing meat etc. Tests for coeliac, intrinsic factor and parietal cells all negative.

TiggerMe profile image
TiggerMe in reply to LifeintheMed

It can just be low stomach acid which makes it harder to absorb (common with hypo's) adding some betaine HCL with a meal would help or sublingual B12 gets over the issue...

Effectiveness of oral B12 sprays

To address B12 deficiency, doctors often prescribe supplements to be taken by varying routes, including oral sprays. The use of oral sprays allows for B12 to be delivered directly into the mouth, to permeate the highly vascular tissue of the mucous membrane lining. As a result of this, the vitamin can directly enter the bloodstream. This route of administration is particularly useful in patients who find it difficult to take B12 in liquid and tablet forms.

In terms of effectiveness, research suggests that compared to tablet forms, sprays have a faster onset of action as they do not need to wait for dissolution. Furthermore, sprays allow for the vitamin to enter into the systemic circulation, bypassing the intestinal vessels. This reduces the amount of time between administration and absorption, which is typically longer when taking other oral forms such as tablets.

This is based on sprays but they tend to come with more excipients than the liquid sublingual

LifeintheMed profile image
LifeintheMed in reply to TiggerMe

Thanks. As a trainee medical herbalist I'm working with bitters atm to hopefully improve absorption

TiggerMe profile image
TiggerMe in reply to LifeintheMed

It was actually remembering to take them that tripped me up 😅

SlowDragon profile image
SlowDragonAdministrator

Have you had folate levels tested

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

In-depth article on different forms of B12

perniciousanemia.org/b12/fo...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

perniciousanemia.org/b12/le...

And why aiming to keep B12 over 500 recommended

perniciousanemia.org/b12/le...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

LifeintheMed profile image
LifeintheMed in reply to SlowDragon

Thank you! So much information here...

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