In a recent discussion I mentioned that I'd previously been using 2500mcg of sublingual methylcobalamin garden of life spray per day albeit in divided doses.
It was suggested that this was too much by a commentator which now has me somewhat confused as others mention taking far higher doses.
I did that for around 8 weeks after a serum reading of 153pg/ml and just took a break of one week and then tested at 902pg/ml.
I know the last test is fairly irrelevant due to only having one week off but it was part of a suite of tests done privately.
So my question is (and I know there isn't technically an upper limit), how much is too much for dose/frequency.
Many thanks
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Steap
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So much of B12 is affected by factors that make it a very personal thing - so what is right for one person won't help another person. All you can really do is listen to your symptoms and respond to those - which is generally what I do ... and I get through a lot of B12 - mainly nasal sprays.
One thing to bear in mind is that amount you actually absorb is going to vary depending on the delivery method - injections are obviously the most effective - with most other methods of delivery being in terms of a few % of the dose getting into your blood - if that.
People also respond differently to different types of B12 - methyl works for me for some neuro symptoms (feeling in left foot) but really does absolutely nothing for me when It comes to neuropsychiatric side of things so I end up using a mix of B12s as well.
There is no upper limit to the amount of B12 that can be taken. Each individual reacts differently to injections and needs different frequencies to manage and control symptoms.
I think you may have misunderstood one of my replies to one of your previous posts.
Your were asking about how B12 supplements affected results of serum B12 and active B12 tests and whether it would be okay to keep taking the dose you were on (as above). And if you reduced that dose, would the tests still be affected.
The reply to both was that any supplementation with B12 would skew any tests, potentially for many months. And that even if you reduced your current dose, it would still be too much - that B12 supplements taken prior to testing will skew those blood tests. (Incidentally, same applies to MMA and Homocysteine blood tests.
Perfect and thank you because I've had 1000mcg sublingual yesterday and this morning and truly don't feel great. My anxiety has returned and the aversion to lights and things that flicker is really annoying.
You can double up on the B12 with no problem, Steap.
I think only 5-20% of sublingual B12 actually gets used by the body. I read that in a paper that was posted to this forum. Kevin Byrne was the author. His paper was linked to another paper by a reporter- can't recall her name but she was reporting on B12.
I take 800mcgs by muscle injection every other day plus sublinguals on the in between days.
I take 2-4 10, 000.00 mcg sublinguals! That's right, 10 thousand mcg in each tab.😊and I've been taking this amount for almost a year.
It's not been a good day sadly. I was hoping this was behind me now. I guess it kind of confirms the benefit b12 has been giving me.
I came close to panic tonight when I could see changes in my vision and feared a return of the migraines I had in July & August before I first found out my b12 was low in October.
I can see sparkles in my vision each time my heart beats and it's really off putting.
I've just had two more sprays of b12.
I really wish the Gp would of prescribed b12 when I first presented with the neuro symptoms back in July but because his test in November came back as 314pg they won't entertain me even though the private test I had done the same week that lead me to the Gp to query b12 was only 153pg, (I hadn't supplemented between tests which made matters worse but did after his test before the results came back so couldn't recheck).
I doubt I'll ever get prescribed injections now as no tests are going to show deficiency and the Gp will not add my private test results to my records.
I do have a 146pg result on file dating back to 2012 that they didn't act upon well before any symptoms except fatigue and a little fog but it's now superceded by their 314 on file from Nov 2016.
I only found out how low my levels actually were back in 2012 two months ago when I requested historical results from the practice. Sadly for me they did say it was 'low' so I took b12 before they retested it a week later and they took the second result on supplements at 287 and never checked it again until I complained in Nov 2016 following my private test.
After the 287 they said it was normal so I never supplemented again properly until May 2016 when I started a multi vit spray. Ironically things go down hill after then quite badly.
I bought ampules from Germany but don't dare use them without at least getting it prescribed and knowing it's safe to use.
I'm seeing a general physician at the hospital mid March and hoping he'll see sense and allow a trial but yet again I'm expecting my nemesis (supplimenting) to mess things up for me.
It's happened in 2012, 2016 and I'd bet my house on 2017.
You'd think gp's should inform patients about supplimenting and testing but they've never ever mentioned it.
That one simple bit of advice could quite possibly of changed my life back in 2012 and avoided all of this.
I curse the day I ever purchased b12 without a confirmation of deficiency although why they felt they needed to repeat the test evades me. You'd think getting a 146 back from the lab would be enough.
The 2nd fly in the ointment back then was a confirmed hpylori infection after going to the Gp with abdominal pain so I guess that was the focus of their treatment.
I've been back multiple times over the years complaining of fatigue and brain fog and even referred to a chronic fatigue rehab program but not once did they test b12 until I did my own private test.
i'm in the same situation, and have run out of injectable b12 and my neuro won't give me more because of high serum levels. ugh. in my state, naturopaths can't prescribe. what state are you in, if you don't mind me asking? thanks!
I'm in the uk. Injectable b12 isn't something you can readily buy here but it's fairly easy to get mail order from mainland Europe. I think lots of people buy it from Germany and it's around €60 from 100 ampules.
thanks. but they won't mail to the U.S. without a prescription...or at least that's what several have told me over the phone. is goldpharma a solid brand? i can try to call them. they're german
Hi, Jde2004ss,I got a notification that your post was for me but sometimes these threads are confusing. So, if you were asking me, ndodge, what state I live in , I live in Portland Oregon.
Steap. Have you tried showing these to your doctor, in particular, the NEQAS Alert about commencing treatment even with low or normal B12 levels, when neurological symptoms are present:
onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)
Your GP should be treating you - are you able to change GP's?
And here's a thought...someone mentioned not so long ago (think it might have been Sleepybunny ) that a chiropodist or podiatrist (can't remember which) can prescribe B12 injections...worth a try if you have numb or tingly toes...or any other foot problem (but not sure about what frequency they can prescribe for).
👍
P.s. If you want to self-inject but are worried about possible reaction to a first injection - you could always go to a private GP and get your first shot that way, so medical,international is available I the rare event that it's needed.
Not ideal, not having it in your NHS medical records I know...but if you run out of options (and it sounds like it's getting that way) the potential neurological damaging alternative is unthinkable....
Thanks again foggyme. You must get less sleep than me.
I printed a lot out and handed them to my Gp along with a copy of could it be b12 for him to keep. He said he was "aware of the guidance".
The best I got and only after a spine MRI that shows something on my cord was a referral to a physician that's taking 9 weeks.
So much for start treatment without delay in the case of neurological involvement.
I've seen three gp's and spoken on the phone to another.
All are aware of my low result in October and I presented at the surgery first with neurological symptoms in June.
They also know I tested with a b12 of 146pg at their own lab in 2012.
I'm presently watching the PAS 10th conference and sat here in dismay because it's all out there yet gp's just don't get it.
Every one of them should be banned from practice until they've seen it.
I also now know why even after they said I had ME I still didn't get a b12 test as a matter of routine because Martyn just explains in his talk that the guidance actually says not to test it in the absence of raised MCV.
I'm literally wiping away the tears or at least I would be if my eyes weren't dry.
I'm a nurse who was managing five care homes and putting in 70 hours a week until the end of May last year.
Now I'm laying in bed until noon and then after two or three hours of what I'll call existence I sit on the chair with my feet up then retire to bed at the children's bed time and they're 7 & 3.
Ps I actually considered going to A&E with a friend and self injecting right outside but that's not really how I roll. This coming from a man who's a nurse an advanced first aider and who has a defibrillator sat by the front door with all the neighbours aware that it's there.
Yes Steap...GP's always say that they're aware of the guidance. And we all know how true that is.
I know it doesn't help, but there are many her who've been - or are going through - exactly the same as you. Disgraceful. Terrifying.
GP's will rarely take the time to look at large amounts of information if it's passed to them (mine didn't) so it's better to highlight things relevant to you and actually go through it with them.
Try printing out just the UKNEQS B12 Treatment Alert (link in one of my replys above) - it's one page with a short sentence. If your GP won't read it, read it out to him.
Then...
If you're a member, go to the PAS website (library section) and download the document called 'Subacute Combined Degeneration of the Spinal Cord'. (If you're not a member, do an Internet search and something will pop up. But..use information about the condition only - treatment regimes vary and its best to stick to UK guidelines - which you have in my last reply). Sorry I can't include the link...member's log in required.
The PAS document (or Internet research you find) outlines one potential outcome if B12 deficency is untreated or under treated: the neurological condition subacute combined degeneration of the spinal cord (SCDSP). This is potentially irreversible.
I'm not suggesting you have this, but GP's are often unaware of the neurological havoc that B12 deficiency can wreak on the human body. Yours certainly is. And it might just shock your GP into treating you. It should do!
Especially in light of the MRI evidence relating to your spinal cord issues. This may or may not be down to B12 deficency. But why would any doctor want to take the risk that it might be?
If it doesn't persuade him and you're feeling really brave, ask him if he is willing to accept responsibility for this potential outcome - if he is wrong.
Then smile very sweetly and politely...gently gently....ask for this specific document to be placed on your medical records together with the fact that you have again requested (and been refused) treatment for B12 deficiency 😄
Steap - you're now stuck between a rock and a very hard place. It's going to be extremely difficult to get a GP or specialist to treat you as B12 deficenct (because of the supplements and increased B12 levels) unless you're lucky enough to find someone who actually knows any thing about B12 deficency. And these people seem to be extremely rare.
I know that you're risk averse and are reluctant to self-inject, particularly the first injection - but please think of the greater risk to your neurological health.
It might be a good idea to either get a private GP to do a first injection, or follow-up on your own idea, above.
So much I'll health, pain and heartache could be avoided if GP's only had the wit and will to listen to their patients. Unfortunately, few do.
If you lived in Europe you could go,into any chemist and buy B12 injections over the counter and inject as often as you needed to get and keep well.
Yeah, it sounds as if you are stuck between a rock and a hard place. My heart goes out to you. 💔
You could post a question on this forum about the safety of the German B12- I know from reading so many posts here that many many people use it with 100% confidence. And good results!
The medical community on both sides of the pond have really dropped the ball on B12. Such a shame to put so many people at risk for permanent damage.
Seriously, query how many people here self inject with German B12. If you feel more at ease about it, folks can walk you through the process.
It's not that. I did my homework and got it from a reputable registered pharmacy.
It's the fact that I've never had it before and there's a risk of anaphylaxis.
I'm an RN and don't want to chance the first few doses without medical supervision.
Oh and can I say a big thank you for helping to ease my nerves tonight.
Anxiety is quite possibly one of the worst things this situation creates. Partly due to I guess the illness but also due to the lack of good medical intervention/long waiting times.
Thanks also to other commentators. I doubt you realise how much good you actually do.
You cannot overdose on B12. Take what you feel works for you. Monitor all your symptoms on a daily basis to track if things are moving in the right direction.
Are you taking folic acid as well?
I take 2x 5000mcg methyl several times a day to fill in from my weekly cyano jab.
It all depends on how much your gut recycles and how much B12 is used up by your lifestyle and stress level.
Correct. He's unable to intervene on behalf of the Pernicious Anaemia Society unless PA a confirmed disgnosis.
You could try Tracey Witty at B12deficiency.info. She sometimes acts as advocat for patients with B12 deficiency (her focus is on B12 deficiency rather than PA).
I think I'll just go to bed for six weeks and get up on March the 14th. See the physician who'll most likely agree with my Gp then come home and self inject if i still have the coordination, vision or cognitive ability to do it by then.
Surely the small risk of anaphylaxis is less than the risk of accepting the medics view point and risking more damage.
Every day the clock ticks the risk of worse or permanent damage increases.
My opinion of Gp's has totally changed over the last year and I feel bad about that having always held them with such high regard.
They seem scared to simply try something so innocent and reportedly harmless that could do so much good.
It's almost like they have their hands tied by some higher more powerful entity.
it is my understanding from my GP that high levels are not an issue. My blood levels are very high 2000+ pg/ml. I feel good so i just don't worry about my levels. I judge by how i feel. I know i need a shot when my moods take a downturn, negative, depressive, apathetic, need for isolation....i inject weeklyand supplement with sublinguals
It's the lack of diagnosis that's crippling me. They won't accept their own lab results at 146pg in 2012 or my private lab results of 153pg in 2016 as enough evidence of the condition because I didn't have the antibodies and they have conflicting b12 results too at 287 in 2012 (I can explain that due to taking b12) but they get a 314 after my private test and I didn't suppliment between tests in 2016.
It's just so frustrating and confusing.
A trial I guess would help to clear things up but they simply won't agree.
Lack of a formal diagnosis has hampered me for many years.
I had B12 deficiency diagnosed several years ago, was not due to diet. I had many neuro symptoms. IFA test was negative and all I got was one set of loading injections. I was not well informed about b12 deficiency having been labelled with CFS etc.
A few years passed and I was struggling and deteriorating. I remembered about my low B12 result so I started researching B12 deficiency, I read "Sally Pacholok's book "Could it Be B12" and it was a lightbulb moment for me. i read Martyn Hooper's book "Living with Pernicious Anaemia and b12 deficiency and cried because it was like reading about myself.
I had so many of the symptoms of B12 deficiency that I found it difficult to believe that I'd been allowed to deteriorate. I got some of my past blood results and found some results on FBC (Full Blood Count) that suggested the possibility of B12 deficiency. I wrote polite letters to GP listing my symptoms, reminding them of my past b12 deficiency and asking if b12 deficiency was still a possibility...more recent results were in the 300s. Asking questions seemed to annoy GPs. I raised the possibility of b12 deficiency with most consultants I saw as well, but only one was willing to discuss the possibility.
I came to the sad conclusion that the NHS was not going to help me at that point and it was up to me so I started to self treat and some of my neuro symptoms disappeared.
The BSH Cobalamin and Folate guidelines came out in 2014.
I wish so much that these had been published a few years before because I'm sure I would have been diagnosed with Antibody Negative PA (mentioned on flowchart in BSH Cobalamin guidelines).
If the liquid is pure b12 n not including any other b vitamins or others I think its what helps you personally. My daughter uses a sublingual b12 liquid from Holland n Barrett to help prevent mouth cankers (big large n deep absess's in her cheeks) it's worked wonders n help stop them in there tracks. GP tried everything n her dentist blamed her, none of them listened to her. It was only taking to a pa site that I got the right advice. If you are unsure what dosage to use try n contact pas or join fb and join a pa group on there.
Steap, I trusted my GP n thought he/she knew about pa but unfortunately they didn't. Through years of not being treated properly I have neuro problems, and sub acute combined degeneration of the spinal cord secondary to pernicious anaemia (sacdsc). While some doctors know a bit about pa don't assume they have all the facts. If your not a member of the pernicious anaemia society it's well worth joining. Martyn n the other volunteers have helped me so much it's made my life alot better. Health wise I'm a bit better than I was, as in I'm getting my injections every 6 weeks now from my GP. Mentally they have boosted my confidence n I dont feel as though I'm on my own any more. I was close to hurting myself seriously before I found them cause my GP wouldn't listen to me n put hypercondriact on my medical notes. I'd hit rock bottom. Keep pushing n pushing until you find a doctor who will listen n help. Good luck
I took a week long break from the 10th to the 17th before a blood test and just to see if the b12 was actually doing anything. I started again on the 21st (11 days with no b12).
Let's just say it was a mistake.
This weeks been awful with eye issues, fatigue and feelings of doom and the burning on my leg has crept back in.
There's something about looking at bits of paper with numbers on and when the blood results came back as normal serum and high active despite reading on here to ignore results after supplimenting it still threw the scientist in me and had me quite worked up.
Interestingly off the b12 my feet weren't so bad and the first few days I felt good but then took a dive. I notice my feet are aching back on it.
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