As above, have any of you had your symptoms appear to worsen after taking B12 suppliments/treatments?
After I thought my doc had done all the tests he needed, I tried some B12 sublingual (2 types, methly and cyano) and it appeared to make my symptoms worse!
In a way, I feel like the exacerbation of the symptoms might somehow point to B12 being the issue, though perhaps not exactly as I'd first thought.
Is this something you've experienced and what did you do, did you stop taking or carry on and what was the outcome?
Cheers
D
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maddog7
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Hi maddog7 & MissGx It is quite common for symptoms to appear to get worse before they get better as the B12 starts to repair the damage done to the nervous system by the deficiency.
It's as if the brain starts getting messages from parts of the body it's not been in contact with and "forgotten about".
An idea is to list all your symptoms and every day score their severity on a scale of one to ten (one being tolerable - ten pretty rotten) adding new ones when necessary and deleting those no longer manifesting themselves. You may need a large sheet of paper as injecting or supplementing with B12 is not an overnight magic cure and it is likely that the longer you have been deficient the longer it will take to heal.
Another thing is to make sure your Folate level is good as this is essential to process the B12
Yes, me! I had 6 loading injections a few weeks ago and felt horrendous during those 2 weeks, pretty much couldn't function. It wasn't until about a week and a half after finishing the injections that I started to feel better. I then had 5 days of feeling pretty good and at times 'normal'. I decided to take a 1000mcg sublingugual of methylcobalamin on Tuesday and felt awful again the next day, I'm feeling slightly better today (Thursday). I'm really confused as to why I feel so awful after injections/sublingual. My b12 was 179, my ferritin was 10 and my folate level was 15. I've been taking iron tablets for the ferritin for a month now and have taken a good multivitamin (with other b vitamins and folic acid). I'm struggling to find information online about why someone would have such a bad reaction and what I can do going forward. Obviously the general advice for someone who has a b12 deficiency is to take lots and lots of b12, I am actually rather scared to take anymore
I've read that methyl might mobilize any mercury in your body(amalgam fillings etc) So its possible that would make some symptoms worse.
from what I can see mercury is very good at robing methylcobalamin of its methyl element forming methyl mercury - an organic form of mercury but the amounts involved are small and methyl mercury isn't any more toxic than inorganic mercury - though it may be more widespread in the body.
Basically there seems to be a lot out there in popular articles about methylcobalamin and amalgam causing problems but I haven't been able to find a site that I regard as having proven research protocols and no research articles that I've been able to find that actually point to this as a real issue.
fbirder are you aware of problems/relevant research
There appear to be parallels with amalgam illness and B12 deficiency where it comes to a lack of data. In both cases it would appear that the motivation for inaction is squarely financial.
The overwhelming sentiment I feel on this forum is that B12 deficient/PA patients think they are not being given adequate testing and treatment, while most of the medical community insists they are.
I have experienced the situation regarding amalgam illness and there is not a single shadow of doubt in my mind that the amalgams I had in my mouth were making me ill. I had 11 large amalgams removed in 2008-9 and within 6 months nearly all the health issues I was experiencing for the previous 10 years either totally resolved or significantly improved.
It would appear that the argument against amalgams causing illness is that the amount delivered by them is small or totally non-existent but so many factors are involved that surely not all cases are the same. When I mentioned amalgams as a possible cause of illness to my doctor, he simply opened his mouth to show me all of his amalgam fillings and proclaimed that they "weren't doing him any harm" however his fillings presented a tiny surface area compared to mine, were less in number and were pitch black in colour whereas mine where shiny chrome/silver colour.
I would find that after eating something chewy like steak or drinking hot drinks (esp coffee) I'd end up with a definite metallic taste in my mouth, I'd also find this taste after running or other exercise. After replacement of all amalgams I no longer experienced this.
It seems likely to me that mercury vapour was chronically escaping from the large surfaces in my mouth and I was inhaling and ingesting it. The differences between the colour of my own and my doctors fillings would suggest to me that they may have been of a different composition than mine or the environment inside his mouth was different to my own.
I was on holiday and talked to a friend of a friend who is a dentist and asked him about amalgam and the crux of the conversation went something like this:
Me: Do you consider mercury amalgams to be safe?
Dentist friend: Yes.
Me: Do you place them in your patients?
Dentist friend: Yes.
Me: Would you have mercury amalgams placed in your mouth.
Dentist friend: (Smiling) No.
Me: Would you have mercury amalgams placed in your wife's mouth.
Dentist friend: (Now smiling a little nervously) No.
Me: What about your children?
Dentist friend: (Now not smiling at all) Definitely not.
At the very least this conversation conveyed to me that the safety of mercury amalgam fillings is not beyond the doubt of the extremely intelligent people who place them.
While we are on about dentists I will also mention what alerted me to the amalgam situation.
My wife came home from the dentists looking a little worried, I asked her what was wrong and she said "The dentist has found something in my mouth" She then went on to show me something on the inside of her cheek her dentist called a lichenoid reaction, so called because it resembles the pattern of Lichen growing on rock.
The very first thing I noticed about it was its epicentre was right at the point where a large amalgam filling contacted her cheek. Her dentist took a biopsy which turned out to be stage 1 of 5 pre-cancerous. My wife assured me that this was nothing really to worry about but I was nonetheless worried.
I asked her if her dentist mentioned anything about where such reactions come from and she told me that her dentist had indeed informed her that certain foodstuffs could be the cause. Tomatoes and mint where the two most likely candidates.
The fact that my missus has been eating tomatoes and mint since she was very small, allied with its position at the centre of a large amalgam made me suspicious indeed.
I went on to read books by Hal Huggins, Andrew Hall Cutler and a couple of others whose names I can't recall. As a result of reading those books I said to my wife that I thought she should have that filling replaced with a ceramic one, she did and within 10-14 days the reaction disappeared completely and has not returned to date (despite her best efforts to provoke it with mint and tomatoes:))
She has since had all of her amalgams replaced with ceramic.
Of course, all of the above could be spontaneous recovery or psychosomatic in nature but as far as myself and my wife are concerned.... if it walks like a duck........
I guess that hunches are of almost no relevance in the double blind, placebo controlled, peer reviewed world of science but I do have a hunch that there could be a connection between mercury toxicity and B12 deficiency.
my concern in responding was primarily the link that was being drawn to methyl being particularly problematic in relation to amalgam - I could find no evidence of this. The process that you mention does, indeed have nothing to do with methyl but is to do with inorganic mercury.
as far as I can ascertain using methyl will not lead to any greater risk from amalgam fillings from any that having amalgam fillings might cause in the first place.
I am glad that removing the fillings has helped your family and those around you and hope that as time goes on then may be studies will make things clearer - it is certainly true that there are many treatments that would have been considered safe in the past that would not be touched today and there are also others that were abandoned for a while but have now found medical niches (thinking about use of leeches for some medical procedures).
Your GP's response on amalgams was, I agree, stupid - you cannot argue from one example to a generalisation.
There is, as far as I can find, zero evidence linking methyl mercury with B12 in humans (only in bacteria that live by reducing sulfate and which aren't found in humans).
Hi maddog7 - yes my symptoms are worse - had loading dose (Hydroxi) end of July then took B12 sublinguals (methly) now on my 3rd week of self injecting (Hydroxi) alternate days and am getting worse - tempted to stop of self injecting to see if I feel any different - it certainly seems that we have to be in this for the long haul from what I have read in various posts.
Agree ...I started to SI back in April and although generally a lot better I developed tingling and numb feeling in a couple of fingers and my big toes? Would be very worried but think from what I have read on here it is all part of us healing ..?
I Can't go back to the way I felt before .. and so will persevere as I had no help from the Doctor's for almost 30 years! A dreadful waste of life and the quality it should have been ... x
I have recently tried taking B12 supplements, but have suffered awful bowel problems - dreadful pain and flatulence! Had to stop taking them, as the discomfort was affecting my sleep - the problems got worse when I lay down at night. I have Hypothyroidism, and my levels of B12 are low - any advice please?
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Why would Active B12 blood test not be recognised by GP when I have lots of symptoms?
Another question: did anyone have all their joints crunching, clicking, and sore when their b12 dropped into deficiency range?
Curious why GPs are so reticent to support B12 symptoms
