Has anyone here used B12 oil from Australia and if so, did you find it as good as injections? That is the claim. It's a transdermal oil.
I have been using it and if I really concentrate and use it twice a day instead of once a day and take daily B12 drops I can get my B12 to the top of the range. But it falls as soon as I stop that level of intensity. I just went to reorder the oil as I'm nearly out, but it's currently over £44 a bottle, which is 60 doses. That, on top of my thyroid meds (that I have to buy) the private endocrinologist I need for thyroid help and all the darn vitamins I have to take, is really mounting up.
Would I be better off buying B12 ampules and self-injecting? Would it cost less do you think? Would it be more effective at holding my levels up at the top of the range?
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FancyPants54
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I don't think it has a use by date, it's just oil in vegetable carrier oil, bright red like the injection ampules. I'm a way away from the bottle now so can't check.
You have to follow a link from the maker's web site and the invoice is sent by email, so it's not like a normal web site sale as such. I think this is so that they can use accurate international shipping for each order. It was recommended by Paul Robinson of thyroid recovery fame.
I've never tried injections for B12. I haven't been diagnosed with low B12 or PA, but I struggle to get my levels above 500 and keep them there by all other means and I could do with it being optimal given my crappy thyroid status and the horrible nerve issue I have with my feet.
It just suddenly seemed such a lot of money given I have to double up the dose to get my levels up to the top of the range.
He recommended it to me just last year, which is why I bought some as I'd not heard of it before. He gave me the details when I was talking to him about my thyroid issues. Perhaps he's changed his mind since.
He does injections? Wish he would have put that in his book I bought 11 years ago Maybe he started afterwards. I went more and more downhill thinking it was all thyroid and adrenals, and it wasn't. Wish people would emphasize functional deficiency more, I know I am not the only one. Sorry for the rant!!
The order in which he recommends patients to read them is:
'The thyroid Patients manual'
'Recovering with T3',
'The CT3M handbook'.
I'm wondering whether it's in the thyroid Patients manual, which is the one that covers a broader range of stuff. Unfortunately I can't look at the moment.
Thanks for the reply BB001. I got Recovering with T3 around when it first came out. I followed the CT3M story via STTM but I was already being treated for adrenal insufficiency. Didn't realize he had written 2 more books. I kind of stopped following him once I found this forum.
No worries, no need to look it up, thanks though. It was just interesting to hear that he too had/has a B12 problem. B12 deficiency is what made me intolerant to levo and why I also went on T3-only for a number of years. With sufficient injections, and over a period of 7 years, I've been able to sloooowly raise levo to a decent dose, but still working on getting optimal.
He's also written an updated version of 'Recovering with T3'.
I'm so glad you're feeling better.
Re thyroid and levothyroxine (aka T4). Some people don'tconvert T4 to T3 very well, I'm one of them. This might be one of the reasons why you're not yet optimal. See this research by Midgley et al ' variation in the biochemical response to l-thyroxine therapy and relationship with peripheral thyroid hormone conversion efficiency ' ncbi.nlm.nih.gov/pmc/articl...
A quick way to give you a rough idea of whether you're converting T4 to T3 well is below.
When on no thyroid meds containing T3
fT3 ÷ fT4 (in ppmol/L)
If <0.23 you are a poor converter and are likely to benefit from adding T3 to your thyroid meds.
Thank you I'm still taking plenty of T3 🤣 87.5 levo & 31.25 t3. At my worst I had to drop to 12.5 mcg t3. I started by increasing t3 slowly to some dose (maybe 75mcg, can't remember), then did a trial of 6.25 levo to start with... and over the years added in levo max ~6mcg at a time, & decreased t3, as appropriate.
I never get on great with T3 only either, think i do need some levo. Ages ago, before b12d & AI, i was on 135 mcg levo only. I don't know if i'll ever be able to go back on levo only but there's no need ... a dash of t3 seems to be fine for now.
I was thinking that i never had a single FT3 from the levo only days but actually i do. This was back in 2010. My new GP said i was overmedicated and i didn't know then what i know. I dropped from 135mcg levo to 75 mcg 😱 and all hell broke loose. The following 6 years were the most miserable of my life & i've been trying to get it back these last 7. Anyhoo i will have to check what my conversion was then albeit on 75 mcg or whatever horrible dose she had put me on. I know lots could and will have changed since then re conversion capability, but interesting to know nevertheless. Thanks!
Well this is interesting. On 135 mcg T4-only way back when, my levels were as follows.
(Thanks FancyPants to you and your husband for this great % tool! And sorry for hijacking your thread. ❤️)
FT4: 1.37 ng/dl (Range 0.7 - 1.8) 60.91%
FT3: 3.36 pg/ml (Range 2.1 - 4.2) 60.00%
ratio 0.29
Good conversion! This was after raising back to 135 though not sure how long I was on it after lowering.
I probably just needed a raise back then. I wish I knew then what I know now. My new doc #2 put me on Erfa and I struggled with it for a year, then switched to T3 only. Even the 'good docs' are limited and stuck in their ways. The only group I've found that's completely knowledgable about all the ins and outs of thyroid issues is the TUK group here on HU. Wish I had found them back then before going down this rabbit hole.
I do wonder if I can ever go back to Levo only now. I assume my conversion capability will be all messed up after 13 years of all this nonsense. Ah well. Thanks for this BB001!! I had totally forgotten I had these results on T4 only.
I was going to say: 'your results are not in pmol/L so the conversion ratio is inaccurate, however having just worked it out by having changed them to pmol/L, I too get a conversion rate of 0.29. (Conversion rate = fT3 ÷ fT4 = 5.1613÷ 17.6346 = 0.29).
According to Midgley et al that makes you an INTERMEDIATE CONVERTER, not a good converter. (A good converter is >0.32). So you would still have benefited from T3 adding to your thyroid meds.
Your current dose of 87.5 levo & 31.25 T3 is equivalent to about 29 + 31.25 = 60.25mcg T3.
If you ever want to convert your results to pmol/L you can use this tool. There's a separate line for each of T4 and T3 due to their differing molecular weights.
Thanks! I was going to mention i had converted to pmol for the ratio calculation (i used the sites you mention) but the browser started acting up on me so i just hit send and went to bed. 😂 Good food for thought. I appreciate the discussion
I'm afraid that B12 is a large molecule that cannot easily penetrate the skin so it is very likely that B12 oil is doing nothing. I would take more drops instead as B12 can be absorbed passively by the gut.
It most certainly does absorb well, I've proved that. It's just the cost of it that bothers me. Patches didn't help me. Sublingual tablets didn't either. But the oil does. Drops on their own don't work as well either. But combined drops and oil got me to the top of the range.
My understanding is that if you have Pernicious Anaemia you are lacking an intrinsic factor that means you can't absorb B12 via the gut, and you need injections.
You can't absorb via the usual channels but you can via passive absorption. I have PA and find B12 liquid works very well for me. But I do have to take a lot as passive absorption is very inefficient.
Even if the B12 oil works ( which I doubt ) it seems very expensive. Sublingual tablets don't work as the B12 molecule is to big to permeate the mucous membrane. Any benefit from them is due to the B12 being swallowed and being absorbed passively by the gut.
I still think you would get more benefit from increasing your drops. Don't take the drops in one go as the body can only efficiently passively absorb a small amount of B12 within a given period of time. In order to help B12 absorption it is recommended that you divide the dose over the course of the day.
I dilute my drops in water and then drink it throughout the day. It's really easy to add a few drops to your daily drinks. Obviously not tea or coffee. And it has an added benefit. All the fluid I drink keeps gives my skin health. Everyone comments on how good my skin looks.
Hi FancyPants54, it does sound like it could be b12 malabsorption, eg pernicious anemia. Do you currently have or get low b12 symptoms when you stop?
If so, i would try to get some testing done first, as it can be difficult to get a diagnosis once you've started on injections. And if it's not on your medical record, it will be another fight in the future.
But in my case, it's not on my medical record either. I have not tried drops or transdermal. I did take high dose sublinguals for decades and levels always went high. I tried 10,000 mcg for a month (very pricey). I still developed severe neuropathy and my arms were totally numb. After being dismissed by GP, and later a neurologist, I did private labs (Active B12, MMA, homocysteine, antibodies) - everything came back normal. No one would take me seriously so I started self injecting. I got the first one done by a nurse, then bought my own from Germany.
If you do go this route, get the first one from a health spa (search online for 'b12 injections near me'). There is a rare but possible risk of allergy causing anaphylactic shock.
1 ampoule of hydroxo b12 these days costs about 1 euro. If you don't have many symptoms, you could probably get away with doing them anywhere from once a week to once a month.
Here we go by symptoms, not blood levels. Once on injections, levels will go sky high anyway. Frequency is then determined by whatever keeps b12 deficiency symptoms at bay. Some need daily, others are fine on monthly.
I don't have diagnosed B12 deficiency and my blood cell size does not show any anaemia. The peripheral neuropathy could be from the hypothyroidism. As could the fact that my B12 levels drop to below 500 if I don't supplement.
My endo does not think I have a problem but no one can explain my foot pain.
Many people with PA don't actually have the anemia part, it's been known in the literature for many decades. So don't let that fact dissuade you.
Would your doctor be willing to run intrinsic factor and gastric parietal cell antibodies? Those are not affected by taking suppkements.
Peripheral neuropathy and foot pain can well be from b12 deficiency.
B12 is safe and non toxic so a trial of injections is always worth it, in my opinion.
With nerve issues you would want to start on every other day (EOD) injections until 'no further improvement'. Still works out much cheaper than the oil.
I don't know if the GP will or not. They are quite helpful on the whole. I do need to go and see one of them anyway because I have a weird patch forming on my skin on my leg that the nurse who I took mum to see last week said she had never seen before but thought I should have a doctor look at it. I could ask for those 2 tests to be run at the same time. Good idea. Thank you.
An unusual gait (way of walking) is a recognised symptom of B12 deficiency.
It's vital to get enough treatment. Inadequate treatment increases the risk of permanent neuro damage. In severe cases the spinal cord can be affected.
PAS article about SACD, sub acute combined degeneration of the spinal cord
Club B12 is a group of researchers, doctors and other interested people who are looking into B12. They have regular zoom meetings and a conference in UK Sept 2023.
Thank you Sleepybunny for that very comprehensive set of links and things. I have read "Could it be B12" a while back. I will go through these links. Good to know NICE has functional B12 deficiency covered because the NHS will not consider my current blood levels deficient at all.
Wish me luck in getting somewhere. I can't go on like this. I have done everything I can think of to fix myself apart from B12 injections. I have worked for 9 years to get my thyroid right and still can't. I have spent a fortune. I don't have much faith in doctors I'm afraid. That's why I have only been once about the pain and tingling in my feet. That was during lockdown. I saw a locum. He got me to lie on the couch and then pulled one leg after the other up straight towards the ceiling and declared me fine. Nothing wrong with the nerves in my back so my feet must be fine. If it gets much worse I will not be able to sleep soon.
I have scoped out a health spa local to me that do them. So I know where to go. What I don't have is a place to buy the supply I need and the needles. Can you share a link by private message? My only symptom is my crippling foot problems. Tingling, burning, stinging, stabbing. Numb yet hypersensitive. Everything from the softest furry slippers, or wool carpet through to the insides of my shoes feels like course grade sandpaper rubbing my skin raw.
I've lost my confidence because my gait is so off and I'm afraid I will fall because I can't feel where my foot is.
Oh my , I'm sorry, that sounds painful. That does sound like pretty bad neuro symptoms. Which can of course be from other things besides B12 eg diabetic neuropathy.
I've sent you a Chat message.
Ordering to the UK usually takes 4-5 days.
Most people start out with the Panpharma brand. If you will you go EOD, you'll need 1.5 boxes per month, so get at least a few boxes to get you started. Apohealth give free shipping but the individual box price is a bit higher.
Best to order when temps are cooler. B12 is sensitive to heat and also to light (so keep it in the dark at home).
Deciding on needles may be more tricky but for starting out, you may want to go the SC route, with shorter needles. It's all in the file.
Let us know if you need help ordering. And let us know how you get on.
It is generally recognised that b12 injections are the most efficacious method of getting B12 into the blood , be it Intra-muscularly or sub- cutaneously . Currently here in the U.K. , if we buy from German online pharmacies , an ampoule of the cheapest Hydroxocobalamin ( Panpharma B12 depot) costs about £1.00 :then comes the cost of needles and syringes . I would recommend B12 injections above any other way of getting B12 into your system.
If injections get the B12 into the blood, but I already have decent blood levels (or did have recently due to lots of supplementation) how will injections help? Someone above said it's known that we can have ample B12 in the blood but still be functionally B12 deficient. So how will injections help that position? There is already B12 in the blood. It's just not getting to the cells.
I hope you can understand that slightly garbled thinking question!
I was responding by using my personal experience. I had been treating my B12 deficiency ( eventually diagnosed by a positive IFAB test ) with oral tablets , both kinds including sub-lingual . That raised my B12 blood serum level to a high level but I continued to have the symptoms. so no improvement at all .
When I eventually managed to get B12 injections , the result was remarkable . Immediate improvement and removal of most symptoms , except for one which I now know is irreversible, because it was treated too late .
But we have to realise that all b12 deficiencies are different and we will react differently . I had taken massive doses of B12 tablets which raised my B12 blood serum levels with no benefit to me . The injections worked . I have no explanation why .
FancyPants, Wedgewood, I was just looking up something else and found these links on Tracey Witty's B12 page. See point 5 under "supporting documents" here b12deficiency.info/writing-... - there are several papers and even a link to the NHS discussing functional B12 deficiency! nhs.uk/conditions/vitamin-b... This NHS page says:
Functional vitamin B12 deficiency
Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood.
This can happen as the result of a problem known as functional vitamin B12 deficiency, where there's a problem with the proteins that help transport vitamin B12 between cells.
This results in neurological complications involving the spinal cord.
Injections help because they are absorbed more effectively than tablets. Unclear how they also bypass the "faulty transporter proteins" but they do seem to... perhaps because they saturate the body and small amounts eventually get through to the cells. Even in those people with genetic transporter deficiencies, injections work. I suppose if we could take 100,000 mcg tablets, they might also work 😂 or not... I tried 10,000 for a month and they did absolutely nothing for me LOL.
😂😂 That would be hilarious! Nope. Someone here once reported that, but I've never experienced it! I did get acne, so I thought it was doing something useful, but alas no.
It might work for some, but even so is extremely expensive. I've not used oil, but other transdermal patches. Did nothing for me.
The expense would put it out of reach for me anyway. Injections are relatively very cheap, and, once you've got over the initial trepidation, easy, quick, and convenient.
The only downside is supply. I keep some sublingual spray for when I can't get ampoules. I find that if I swallow 25000 micrograms some gets absorbed. Trouble is it contains sorbitol which adversely affects my bowels.
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Maybe he started afterwards. I went more and more downhill thinking it was all thyroid and adrenals, and it wasn't. Wish people would emphasize functional deficiency more, I know I am not the only one. Sorry for the rant!! 
It was just interesting to hear that he too had/has a B12 problem. B12 deficiency is what made me intolerant to levo and why I also went on T3-only for a number of years. With sufficient injections, and over a period of 7 years, I've been able to sloooowly raise levo to a decent dose, but still working on getting optimal. 
B12 from Germany?
Am I suffering from lack of Vitamin B12?
Has anyone used Hydroxo (as chloride)?
Pregnant and GP has stopped my B12 injections!
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another.
