I self inject daily with Pascoe hydroxocobalamin , I chose Pascoe because it doesn't sting like the Rotexamedico. They do the hydroxocobalamin in 1500mcg in 1 ml solution. I do take all the advised co-factors, problem is I'm very symptomatic, very dizzy, anxious, headaches etc and recently some very weird stomach issues.
I remember reading a post on here, I think it was Gambit who wrote it about overloading your system with B12, I think there was some mention about a damn overflowing ?? .
I am at a loss what to do and feel really poorly.
Can anyone help please
Lorna
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miravet
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miravet, 'overloading' isn't the issue - Whilst I have issues with people who don't have absorption problems artificially raising their B12 levels through over-supplementation and needlessly causing functional B12 deficiency, the situation with someone who has an absorption problem, and needs injections if very different.
The frequency of injections needs to be determined by symptoms rather than some arbitrary timescale based on mythical 'average people'.
The question really is
do you notice improvements after you inject that then goes away with time, or are the injections just not making any difference?
If the injections genuinely aren't making any difference at this point that would suggest that B12 isn't actually the problem and you need to look for the actual cause.
If you do notice a difference then I suggest that you use the return of symptoms to decide the frequency with which you inject.
Hi Gambit, thank you for the reply, it was in June last year that I tested positive for IF antibodies, I was on holiday in Cyprus when I got the Medichecks result. I always had the suspicion that it was likely that I had PA, not only because of the escalating symptoms but also that my dad, his mum and sister had it and also that I already had Hashimotos.
I knew the protocol for treatment, so I went to the pharmacy and bought 10 ampules of 500mcg Methylcobalamin. As it was only 500mcg I decided to inject daily for 10 days, After about the 6/7th day I was completely blown away by how I felt, I could walk straight, the dizziness / vertigo was gone, no more headaches and back ache and my anxiety had also disappeared.
As i have said I knew the protocol, so settled down to injecting monthly or as and when, however after about 3 days of stopping the injections, the symptoms started to creep back, so I just assumed I was one of these people who needed to inject daily. ( probably wrongly, but as my GP doesn't have a clue, it all becomes a bit of a minefield).
For the most part I have been getting along ok with injecting every other day or even every 3rd day.
However just recently I have only been getting relief from my symptoms for a few hours after injecting, then I start to wobble, get anxious and invariably a headache.
I recently did a 23andme doobrie and had a Genetic Variant Report done by MTHFR Genetics UK, they highlight the genes of concern in red, I have several for Crohns, 2/3 for Cobalamin and Folate cycle. There is also 2/3 in red for Vit D metabolism, I am not entirely sure what they mean and am still looking for a way of getting them interpreted.
It is all very odd and I am exhausted trying to get to the bottom of it all, I dearly want to feel like I did when I first came home from my holiday, it was remarkable, I didn't know how ill I had been. ( gawd, crying again .. )
The only thing that has changed significantly is that I stopped smoking in October after 47 years of puffing away, but I have been vaping like a b****r and wonder if that is what is affecting my absorption. I wonder if something in the vape fluid is blocking the B12,
Sorry for the long post, but despite being totally wiped out I felt I needed to get it all out . xx
Please bear in mind though that most genetic variants can require a combination of circumstances before they come into play so having a specific variant doesn't necessarily mean you have or will develop a problem.
Another possibility is that you are just one of those people who responds best to methyl.
Thank you for the Gene link, I'll have a look, I knew that I would need to keep an eye on my thyroid and had it checked about a month after I started my injections, my TSH was VERY low but my antibodies were in the 300's.
Thing is about the methyl or the hydroxo is that I couldn't afford to keep going with the Methyl, thats why I started on the Hydroxo, I was getting along fine with it until the last month or so.
I went to see my doctor yesterday and asked her to check my folate, ferritin and potassium along with a raft of other tests, she agreed but I notice she has also asked for B12 to be tested. Sheesh !!
I was to make a 6 week follow up appointment, but I told the receptionist to not bother cos when they saw my b12 level they would be phoning me lol .
Tomorrow I have decided to have a day with no b12, no folate, mag, biotin, levo etc etc and also no vape and see how I get on .
I've just been looking at the syptoms of hyperthyroidism, gawd I think that may be a possibility, except for the inability to stay still, I have the ability to sit on my butt for hours, although I am self employed so don't have a lot of option.
"artificially raising their B12 levels through over-supplementation and needlessly causing functional B12 deficiency" - could you explain that a little?
Miravet apologies for hijack of this old post but responding to Arnold_Layne:In some people (not all) high serum B12 seems to kick off a reaction that affects the efficiency of the mechanism that transfers B12 from blood to cells, meaning that people have high levels of B12 in their blood but not enough gets into the cells where it is needed. This results in all the symptoms of B12 deficiency but with elevated serum B12 levels. Functional B12 deficiency is recognised as a symptom of some conditions that lead to B12 build up, such as kidney disfunction and liver damage that causes a sudden dump of b12 stores into the blood.
People who take high dose oral supplements but don't have an absorption problem can be putting B12 into their blood faster than their kidneys etc can remove it which can also result in serum B12 levels building up.
This may also be part of the reason why many patients on injections report needing much higher levels of serum B12 to function than people who haven't had injections
Does the functional B12 deficiency end if serum B12 level is allowed to return to normal? (ie if one tried B12 injections but got no benefit and then stopped them does the functional B12 deficiency go away.)
Context: I went low carb high fat in 2014 and it affected my thyroid function, causing low energy and brain fog. I then used dessicated thyroid for four or five years without any relief of symptoms - I either never got the dosage right or else needed T3 as well (not getting enough testing done was the real problem). Fast forward to 2019 and I stopped lchf and dessicated thyroid - my thyroid started working again and my energy level has increased to what I imagine to be normal for my age (51).
However constant brain fog remains (poor short term memory) and although I accept it could be permanent brain damage by now, I'm considering trying B12 injections, hence my question above.
My reason for going lchf was some symptoms (and a family history) of cardiovascular disease - I need to get back to lchf, but would like to address the brain fog first.
When I took various cofactor vitamins recommended on b12 Facebook groups I became very unwell. When I stopped taking them, but continued 2 hydroxocobalamin injections per week I quickly became very very well. And on testing my folate levels have remained strong with out supplementation for the last 12 months.
That Facebook group should be banned for spreading incorrect and potentially dangerous 'health' advice. Nobody needs 5000 mcg of folate a day, long term.
I asked them where it said that everybody injecting B12 needed 5000 mcg folic acid a day. They told me it was Sally Pachalok's book.
The next day I asked for an exact page reference, because I had gone through the index reading every page than mentioned folate or folic acid. They banned me.
They are a dangerous group of people. When diagnosed with PA in October, I joined that Facebook group and after only 1 week and asking a few questions, I was attacked and bullied. I quickly realized that it was a dangerous group of wannabe Medical Professionals who were giving deadly advice. I immediately unfollowed the group. They need to be banned!!!
Hi, well that is wierd, after my post I decided to stop everything, all the co-factors they are always banging on about, the B12, thyroxine etc etc . About three days in I started to feel better, then yesterday I popped a 500mcg of Methyl because I was feeling very dizzy, headache, vertigo, numb legs etc. Today I feel sooo much better, better than I felt in a goof few months.
I am having a raft of bloods done on Tuesday, I will wait and see what my TSH is and then decide what to do after that ( I might even listen to the doc lol )
Why ? , because my own personal experience of having pernicious anaemia and having to battle with GP's to convince them I did actually have it was a long lonely and painful journey. I have had moments of the worst despair with times when I thought the easiest option was to end it all. I do now know that these black thoughts and anxieties were a symptom of PA and have since resolved with ongoing B12 therapy.
All of that did however turn me from a strong and vital woman into a vulnerable and sometimes gibbering wreck, it was when I found the facebook groups and also this group that I began to try to make sense of what was likely to be the best way forward, and also found a sense of companionship and understanding.
The down side has been the fact that I have absorbed all the advise like a sponge in a desert and am consequently where I am now. Still utterly confused about bloody co-factors ( the very phrase strikes fear in me).
Where I am now on this exact day is that I am now going to trust my own body, inject as and when I think I need to and continue with my very healthy diet confident in the knowledge that I do not need to 'take' co-factors, I get everything I need from the food I eat.
I'd love to say that I will now entrust my treatment to my NHS GP, but I can't, my experience which actually led me to over research, is a total lack of respect and faith in my GP and to never trust her or him to listen to me and to treat me accordingly.
Sorry to be long winded but I felt a little ridiculed by your question, and quite rightly I suppose, but as I said previously, when you feel very ill and the only thing you have to rely on are words on a screen from people you don't know, it tends to inhibit the trust you have in your own judgement.
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