Pernicious Anaemia Society
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sublingual lozenges/tablets

How is it that the sublingual lozenges/tablets work for some and not others, I was reading some study which made me stop my b12 injections as of last year due to thinking it was fine and it would continue to raise my b12 levels, but I've just crashed and burnt ... I am not sure of my b12 level but I do know that it was low I could *feel* it before my injection yesterday ..

I still feel tired and fatigued which leads me to believe that it will take a while, longer than one injection to get me back to the place where I was on once every three month injection ..

I am going to self inject as from next week bought the b12 from Goldpharma because of the help of this forum and the people on it, but I guess what I want to know is *why* it works with some and not others and has there been any study to say that oral treatment isn't safe for certain people with PA .. because that's all I see online is that it is I quote *safe* alternative to injections but in my situation, that was/is not the case as all my symptoms came back a couple months after only taking sublingual lozenges.

Has anyone been taking b12 orally with PA and it has worked for them?, this id like to know :)

21 Replies

I'm guessing here but were you on hydroxo injections and changed to methyl sublinguals? If so then you can't possibly know whether it was the sublingual delivery method that failed or the methyl. So little research has been done into the various forms of B12 and the delivery options that all we can do is experiment until we find what works best for us as individuals.

Methyl sublinguals don't work for me at all.


My injections were hydroxo I had them for roughly 4 years before deciding to stop after I needed to go to America for nearly two months, so I bought a lot of methyl sublinguals thinking that they would work *fine* .. there was a lot of scientific research online that said studies were done and it is an acceptable substitute for injections.

So yes It was methyl I was taking .. I came back from USA round about Sept 2014 and ever since now I've been on the methyl subs, just recently a few days ago had my fist hydroxo injection, so I haven't had an injection since about 6 months or so.

I've got really weird symptoms like my hair has gone really thin and lifeless .. my hairline is missing hairs and is not as strong, fatigue, shortage of breath while I was walking over to have my injection which is less than half a mile .. I am 25 and I felt 80 walking there I was quite distressed.

Do some peoples b12 levels not rise with methyl or certain types of b12? I know they say everyone is different but in your opinion do you think that is what happened to me? .. even while I was having the quarterly injections of hydroxo I used to take 5-10mg of methyl b12 in between and I never used to feel any different.

You said the methyl subs don't work for you at all, I would be interested if you expand on that a little, because maybe I am the same as you.

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I was originally put on 12 weekly hydroxo injections but found I couldn't last anthing like 12 weeks. I too had read a lot about how good methyl sublinguals so I bought some 5000mcg Jarrows to take between injections only to find they had no effect on me whatsoever.

Whatever form of B12 is taken the body has to convert to methylcobalamin and adenosylcobalamin which are the two active forms the body needs. I suspect that those of us for whom methyl sublinguals do not work have a problem creating adenosyl from methyl but can create both methyl and adenosyl from hydroxo (or cyano). This is just a theory with no scientific support so feel free to disagree.

I solved my problems by ignoring the doctors and learning to do my own injections. I inject hydroxo fortnightly which seems optimum for me.

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Same, I got mine from Goldpharma which is a real bargain for £12. I'm thinking of injecting once week 0.5ml at a time because I will be injecting subcutaneously so I want to do it more frequently.

What kind of symptoms were you feeling on the methyl? I am curious if it were the same as I had/have currently and if you did have they subsided yet?

Me personally am hoping my hair will get more healthier .. its very thin and lifeless, I'm a little paranoid I'm losing it if I'm honest (borderline obsessive)

I had also constant fatigue, id always wake up tired even after a 10hr sleep and the shortage of breath was getting quite frustrating.

On the other hand though I recently went back on my quarterly hydroxo injection from my Dr and I've had trouble sleeping tonight, I guess my body is getting used to the energy I haven't had in a while.


I could be wrong about all of this (I'm not a doctor), but I think that hydroxocobalamin is a natural (but inactive) form of b12 that our bodies are adapted to, and are able to regulate (if everything is working correctly). And we convert hydroxocobalamin to the active forms of b12 (methylcobalamin and adenosylcobalamin), as needed. So if you absorb enough hydroxocobalamin (from food, injections, etc.), and everything is working correctly, you shouldn't have a problem. But if you're taking the active methylcobalamin form directly, your body can't regulate it, or at least not as well. So you need to regulate it yourself, by taking the correct dosage. Also, your body needs to convert some of that methylcobalamin to adenosylcobalamin. Anyway, I'm guessing this could be happening:

* You're able to convert hydroxocobalamin to methylcobalamin and adenosylcobalamin. And you're able to regulate the conversion, so you get the correct amounts of the active forms. But for some reason you're not able to absorb enough hydroxocobalamin naturally, so you need the injections (or possibly oral hydroxocobalamin would work).

* But now you're taking the active methyl form, that your body cannot adequately regulate, so you need to regulate it yourself, by taking the correct dosage. But you may not be getting the correct dosage, which could be creating some imbalances (maybe even with other nutrients, like potassium?), and causing your wierd symptoms. Also, maybe you're unable to correctly convert methylcobalamin to the other active (and necessary) form: adenosylcobalamin, even though you didn't seem to have a problem converting hydroxocobalamin.

I'm taking oral hydroxocobalamin, and it's been working for me. But I'm pretty sure my problem was just a vegetarian diet (no b12 intake), and my system is able to process b12 correctly. The way I understand it, hydroxocobalamin is much easier to get right, since it's naturally regulated. But you bypass that natural regulation when you take methylcobalamin. So you need to be careful with it, and you need to know what you're doing to find the correct dosage. So if hydroxocobalamin works for you, it may be safest to stick with it.

Anyway, I hope that helps. And remember, I'm not a doctor, and could be wrong about all this.

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I was taking methyl orally in doses of 5mg under the tongue but on some days I took 2-3 so 10mg-15mg .. I just never seemed to feel any better or different really ...

I think I am also vitamin D deficient as my illness got so bad I never left the house (literally never) .. so all in all I think that is masking my b12 symptoms too, not sure if you or anyone else has suffered from vitamin D deficiency, not sure what the best way of reversing it is *how long to sit in the sun per day etc*

I know a lot of studies have been shown that if you are lacking vitamin D then you could have hair loss or it may have negative effects on hair loss / mood and energy etc


I remember reading that vitamin D is really important for helping with at least b12 neurological problems. And I'm sure it's important for a lot of other things too. I use this sometimes, to calculate how much sun I need for vitamin D:

The general idea, from what I've read, is that you need to be out in the sun, when it's at least about 45 degrees above the horizon (your shadow isn't longer than your height). Otherwise there isn't enough UV-B light to produce vitamin D. You may not need to spend a lot of time in the sun, if the conditions are right. Where I'm at (about 30 degrees south latitude), I can usually get enough in about 10 minutes in the middle of the day. But it was a lot harder when I was living in Michigan.


The simplest guidance I saw was 'sit in the sun until your skin starts to tingle'.


Great website- thanks


A rough guide is 10-15 mins in height of sun during summer


If your vitamin D level is low it is VERY important to supplement it. There is a lot of recent research linking lack of vitamin D with serious diseases including Type 1 diabetes, MS, heart attacks, various cancers (Colon, Kidney, Breast, Ovarian, Lymphoma etc.). It is no coincidence that the researchers in this area are all supplementing 4000 to 5000 IU a day and getting their families to supplement as well.

Unless you live near the equator it is very difficult to get sufficient all year round just from the sun. The further away from the equator you live the more difficult it gets.

You can obviously ask your doctor to test your vitamin D. If you are in the UK you can also get your vitamin D level checked here:

If you are deficient you will need to supplement about 5000 IU a day to bring it back up to a decent level over a few months. Typical multivits only have 400 IU a day and this is not enough to increase your levels. It is only enough to stop you getting rickets.

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What about tablets that have 10,000 IU maybe taking that per day for two weeks every other day not every day? .. or is this risking having too much?


10,000 IU a day is OK as long as you test your level before starting and then have tests every few weeks to make sure you are not overdoing it. Ideally you want to get your level to between 100-200 nmol/L which is 40-80 ng/ml. You then want to reduce your supplements to a level that keeps it there. This may mean supplementing less in the summer depending how much sun exposure you get.

It is best to supplement daily rather than every other day or twice a week, or once a week etc. There is research that shows that supplementing less than once a day is nothing like as effective as supplementing every day.


Well I haven't had a test done but lets just say I haven't left the house in months due to feeling really bad symptoms and when we say months I'm talking 4-6 months


OK so it is very likely that your level is too low at the moment but it is always best to know what the starting level is before supplementing.

You can get your level tested quite quickly with the link I gave above. You ring them and order the kit. The kit arrives within a few days. You prick your finger and put a few drops of blood onto the card and send it back. They email the results within a few days. So typically you get the result within a week and you can start supplementing as soon as you have sent the card off.

This is a really good and relatively cheap service. My whole family have had this test done over the last month or two. That is me, my wife, my Son, my Mum and my two brothers and my brothers wife. These were the results we got:

Person nmol/L Status


Son 37 Insufficient

Me 24 Deficient

Wife 60.8 Adequate

Brother 13.2 Severely deficient

Brothers wife 16.2 Deficient

Mum 15.5 Deficient

Brother 207 Adequate

So 5 out 7 of us were below 50 nmol/L which is bad. Needless to say we are all now supplementing including my wife. My brother with 207 was already supplementing because he is a vegan and has been supplementing with various vitamins for years. My other brother and his wife live in the north of Scotland which may partially explain their very low levels.


Oh wow its that easy!? that's really amazing thanks for that link I will check it out!


Oh it takes that long to reverse deficiency? =\ that really sucks .. I pretty much had this bout of depression and with the b12 symptoms barley left my house ... I went to USA last year and got some moderate sun then but before that I hadn't had much for a very long time .. I regularly eat a cup of almonds per day so getting enough nuts wont be a problem.

They said you shouldn't take more than 10,000 per day for more than three months as it is dangerous, why all the mixed information from sources :(

I want to know what kind of vitamin D you were taking .. if you were taking d2 you should of been taking vitamin d3


Yes it is definitely D3 you want, not D2.

10,000 IU of D3 a day is not dangerous as long as you supplement K2 as well and take a vitamin D test every 2 to 3 weeks to see how your levels are doing.

It does not usually take a year to get back to a good level. It took me 3 months to go from 24 nmol/L to 180 nmol/L while I was supplementing 10,000 IU a day. I am now dropping to 5,000 IU a day to keep it at that level.

These are quotes from an article that was referenced by LesleyYorks yesterday:

"When we sit in the sum­mer sun, at noon, with chest, face, and arms exposed we make 10,000 IU of vit­a­min D. Whole body expo­sure pro­duces 20,000 IU in 2–4 hours."

"As most of us don’t receive “sun D” every day, our sup­ple­men­tary vit­a­min D require­ments are much higher than the FDA rec­om­mended 800 IU per day, and are prob­a­bly closer to 5,000–10,000 IU per day just to stay the same."


For reference these are the D3 and K2 supplements I am taking:


What if I wasn't to supplement k2 .. could I possibly take 10,000 IU anyway? I was reading an article and actually just finished watching.

I know for a fact I am lacking b12 as I had a bout of depression and it was literally like I lived in a cave, I would wake up when it was dark and go to bed when it was getting light outside, only now I've realized what I've inflicted on my health ..

So much conflicting information about *when* to go outside many studies say noon then some studies say 10am-4pm


The K2 is important to ensure that the calcium in your system goes into your bones and not into your soft tissues which is called calcification and can lead to strokes and heart attacks.

Here is a link that goes into detail:

This extract gives the relevant detail:

"If vitamin D3 is taken without vitamin K2 calcium might not reach the skeletal frame and this alters calcium homeostasis and leads to calcium being withdrawn from the bone to subsidize for the calcium in the blood and vice versa. The calcium that is not making it to the skeletal frame may end up being deposited in vital organs, the heart especially. When calcium enters the heart, it builds up on the wall of arteries and prevents oxygen being carried through. This is known as calcification and it can lead to heart many heart risks including stroke and heart failure."

So taking lots of D3 without any K2 is not advisable. You will be risking calcification.


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