Hey guys more advice is needed, I have my referral app on Thursday to see if I can get the frequency of my b12 shots increased. My first question is....... I currently SI six weeks into my twelve weekly routine. Should I tell the consultant this? ( this still doesn't seem often enough for me)
Second question is...... My injections are Hydroxycobalamin and although at first I got tremendous relief from them, it now feels that I get little if any relief, and still have to take at least one jarrows 5000 of methylcobalamin every day. If I don't take the methyl after about 4 days the fatigue is overwhelming. I have also started getting numbness down my left leg that goes away as long as I take the methyl. Can anyone explain why the methylcobalamin seems to work better than the hydroxycobalamin ...
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Pixielula
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Methyl-B12, along with adenosyl-B12, are the active forms of cobalamin. Some people don't efficiently convert hydroxocobalamin into the active forms. This can be due to a genetic mutation - MTHFR. Even when no genetic defect can be found, there may still be difficulties with B12 metabolism. I'm just starting to read up on this myself. It's a complex subject, and it seems there is still much to be determined by research.
I should also have said that an initial good response to hydroxo often seems to tail off with subsequent shots. No-one yet knows why, but quite a few of our members have had this problem. Sorry I can't be more helpful.
Ok thanks .... It disappointing to have such a great recovery and then a year down the line not so much!! Any advice on convincing the consultant for more frequent shots do they do methyl shots? ....,
Hi Pixielula. Just to let you know...I also found that Hydroxocobalamin stopped working after four years. Very mysterious!
I now inject with mythlcobalamin and have found that this helps in areas where hydroxo never did!
As far as I am aware, this is not available on the NHS...but I'd love for someone to tell me that I'm mistaken!
With regards to the 'should I tell question'...that's a really difficult one.
Some members have 'told' and then had treatment withdrawn by their GP. Some tell, and GP's are not happy, but still maintain treatment. Some are okay with it (but not many).
When I recently saw a neurologist, I 'hedged my bets' and admitted to taking sublinguals...but not to injecting. I would not tell my GP as I would probably be removed from the books!
It's really not ideal (to put it mildly) about having to remain silent and my natural inclination would to be open and admit it. But if this risks limiting or stopping B12 supplies, then I'm afraid I keep 'mum'.
So....no easy answers. Bit of a judgement call, with no criteria to guide you! 😖.
Couldn't agree more Hillwoman. My GP persists n her view that B12 is NOT water soluble and IS toxic at levels above 2000! Despite being shown medical evidence and research to the contrary - which I quoted before I gave to her but doubt that she bothered to read! Grrr, Grr and double grr.
The other GP is more open to 'education' but as a junior partner, is overruled (over shouted) by the other.
It's the only practice in my area and out-of-area practices are so full that they won't accept out-of-area patients to their lists.
So I'm stuck with this ridiculous nonsense! I have to 'swallow myself' every time I'm forced to go as I can't afford to be struck off!
Oh rant away, I don't mind! Only one practice in my area too. Next nearest is 15 miles away. I've been threatened with being dropped before, when I complained about repeated & very blatant breaches of confidentiality. Maybe I've nothing to lose by making myself (even more) awkward.
I find that hard to believe. They all have the same contents and there's strict quality control on such things. One molecule of hydroxocobalamin is indistinguishable from another molecule of hydroxocobalamin. They may have different amounts of excipients (which are just salt and vinegar) but I strongly doubt that that would make any difference at all.
Thanks for your reply vitaminB12 online....have addressed (or am addressing) other deficiencies. People here are very knowledgable about these issues and always offer extremely good advice....thank goodness!
Seeing a nutritionalist soon (lots of gastric issues) so perhaps that may shed some light on the situation.
I had a very similar problem which I have managed to resolve for now by changing from folic acid to methylfolate tablets.
I need lots of cofactors to metabolise the B12 and take a multivitamin and mineral supplement plus extra potassium, magnesium and iron. I also need to make sure I get a wide range of amino acids from my diet and have to eat more pork products and fish than I'd choose to.
Vitamin pills are different from stuff for injection -
1. Vitamin pills are not subject to the stringent testing and regulations that medicine for injection will.
2. Vitamin pills can, and will, contain widely varying amounts of the 'active' ingredients and excipients.
In the UK, unless you are selling B12 that is not for injection, or not for medical purposes, then the stuff you are selling will be virtually identical from different manufacturers.
How do I explain your anecdotes - it's the same as the way that blue pills help people sleep better than red pills.
People will take Brand X of a product for quite a while. Each time they take it they will, through complete randomness, feel somewhat better or worse than normal.
One day they switch to Brand Y - an identical product but with a different label on it. It just so happens that they are feeling particularly good on that day. They notice it, because they've done something new, and ignore the golden rule - correlation does not mean causation. They swapped from Brand X to Brand Y and felt better. Therefore Brand Y must be better that Brand X.
So they keep taking Brand Y. And they keep feeling better on some days and worse on others. But they know that Brand Y is better than Brand X - so they ignore the worse days and remember the better days. It's called 'confirmation bias'.
It's why real scientists tend to ignore anecdotes and poorly-designed studies and concentrate on peer-reviewed double-blind studies on large numbers of people.
In the absence of such studies then individuals can, if they are honest with themselves, form an opinion. They can do so by keeping a record of symptoms and treatments. And objectively examining the results to look for any trends. (Objectivity is best attained by imagining that somebody you dislike is putting forward a proposal - Brand Y is better than Brand X - and you're trying to disprove it). That's how I realised that methylcobalamin patches were not making any difference for me - and that methyltetrahydrofolate pills were.
But customer anecdotes are notoriously inaccurate. Just read through the Amazon reviews of some products that you own.
Thank you fbirder. Not sure if your reply was for my benefit ie hydroxycobalamin versus the methylcobalamin or in response to B12 online comment? for my question I am pretty sure the methyl keeps me going between shots but I wouldn't like to use them without the hydroxycobalamin in the background, but even within a few weeks of my injection I need to take the subs else the fatigue is back and I don't seem to function speach wise word wise and my legs don't work properly. I start to stagger like I'm drunk. I'm so fed up with this, and I hate feeling sorry for myself,
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