I was eventually diagnosed with PA 3 years ago after having it for 10 years. Consequently have some nerve damage. Brain MRI showed numerous lesions and I also have peripheral neuropathy. GP is happy to precribe monthly B12 injections but I have also been experimenting with self injecting different forms weekly. Weekly injections have really improved my energy levels and reduced the brain fog etc.
Since being diagnosed I have seen gastroenterologist...knew very little about PA and said didn't need any monitoring for gastric carcinomas... and a neurologist, who also knew very little about PA but did give me a thorough neurological assessment and recommended I had monthly B12 as I was obviously "very sensitive to B12". Neither had any advice about different forms or B12 how to improve my symptoms.
As an ex biochemist I was keen to discuss things with someone who knew more than I did so my GP has referred me to a biochemist who she hopes may be helpful.
I would like to discuss with them possibilities of problems in the methylation cycle and issues with B12 entering cells and mitochondria. And ask their advice about different forms of B12 for treatment regimes etc.
Does anyone have any other ideas of questions to ask?
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Songbird63
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That is simply brilliant songbird 63! Count yourself very lucky that you have such a marvellous GP . PA patients very very rarely get any understanding , and often suffer greatly as a result. . I was looked upon as an Hypochondriac , and dismissed , when 3 monthly injections ,(par for the course) were insufficient . I now self inject to keep well but I'm left with some neuropathy due to delayed diagnosis and under-treatment . The questions you want to ask are the very ones that plague us . I hope that you get somewhere , as the medical profession is horribly ignorant on the subject . We have heard from Martyn Hooper ,our chairman ,that there is some ongoing research into PA . But we don't know any precise details . The more publicity we get the better . Best of luck to you ! 🍀🍀🍀🍀🍀
Thanks. I'm hoping that this consultant will be knowledgeable and up to speed on the new research. Yes my GP is great but it took 10 years to diagnose!
The first question that comes to me is - can you take me??!!
I asked my GP if he knew of anyone I could see and he wasn't interested. I approached my local university to see if I could speak to someone there, also to no avail.
I need to take extreme, although not unprecedented, levels of vitamins, minerals and amino acids just keep my body functioning and would love a better understanding of metabolism at the cellular level. (I SI 1.5 mg in 1 ml hydroxocobalamin daily and take a broad spectrum multivitamin and mineral supplement plus extra methylfolate, potassium, magnesium and iron).
The heat this week has wiped me out so I haven't been able to work. As I'm self-employed this is very worrying and I need to do something about it.
My questions to the right person would include:
How does it work? (To get an overview of how they approach the subject to try to develop a mutual understanding).
What are all the components required?
How do they interact?
What balance is optimum?
How would I gauge what the limiting factor was?
What are the lock-up and toxicity issues?
What are the possible reasons for it not working in my body?
What are their suggestions for improvement?
What is the long term prognosis likely to be - so I can formulate some coping strategies.
Seriously, I would love the opportunity of speaking with someone who might be able to help. Are you in the UK? If so and you see them would you ask if this might be possible, please? I am in Suffolk.
Thanks, I will try and ask as much as possible. I'm just hoping she will be up to speed and knowledgeable. Without being arrogant I'm fed up of talking to people who know less than I do!
I will post when I have seen them...still waiting for a date. Its in Oxford Uk so not too far from you.
I know what you mean - even I (with only basic knowledge ) have found it hard (so far impossible) to find anyone beyond this group with greater in-depth understanding. I paid a highly qualified, registered nutritional consultant who should have known all about it but "didn't"!
I wish you every success and look forward to hearing about it. Fingers crossed!
Would be interesting to find out why some people cant process the hydroxo based b12 even though it is the more stable of the cobalamins, and reputedly the most effective. How would a gp find out that hydroxo wasnt effective for a patient if they only administer quarterly injections and ignore ongoing symptoms.
Wonderful, thanks so much, Songbird63. What an opportunity!
I'd like to know more about why people develop antibodies to B12. I SI every other day and take high dose sublinguals in between. I'm shocked at how often I have to inject.
Wondering if there is a fix for this problem. I didn't know for sure that is what my problem is, but I highly suspect it. Started out with once a month injections and had to keep doing then closer and closer together. I've reduced the amount of each shot, now I do 800 mcgs instead of 1mg.and it seems to be helping the b12 work better and in a more consistent fashion.
Thanks for doing this and I look forward to hearing what you learn.
I'd like to know more about why people develop antibodies to B12.
There is little evidence that this happens apart from two studies. One described an individual with antibodies to B12. The other was an individual with antibodies to the transport protein TC.
I'm sure there are lots of reasons why many people need more B12 than others. I can think of several off the top of my head, but they are all speculation until somebody actually does the research.
If I were Bill Gates I'd sponsor a few PhDs to examine the matter.
fbirder, what about the Dutch study that showed that 30 or 40 percent of people who injected b12 developed antibodies to they b12? Was it referring to the transport protein TC? I didn't read the study, but would like to. Do you know where I could find it? Thanks!
I believe it was Gambit62 that originally posted information about and/or from the study. I'm not sure if the study was ever posted or just referred to. Sorry I don't have a link, can't remember if one was ever posted. I think Gambit62 will know more about it. Hope we can find it
it wasn't necessarily development of anti-bodies but certainly a significant proportion of people in a danish study who were receiving B12 treatment as a result of an absorption problem showed signs of functional deficiency - the study itself is mentioned as a reference in this article.
was 30% that exhibited the response. It has been referenced in other studies/reviews as well.
Schwartz M, Bastrup-Madsen P. A new vitamin B12 binding protein in serum causing excessively high serum vitamin B12 values. Scand J Haematol 1968; 5:35–40.
I think fbirder may have found the actual study somewhere and posted but I don't have a link for the actual article itself.
sorry about the drive - I lost hard drive a couple of years ago and then discovered that the backups that I'd been taking sporadically hadn't been working ... so lost about a years worth of stuff. Really hope that you don't find yourself in the same position.
How does MTHFR affect methylation. Not a lot at all.
I'm homozygous for the C677>T mutation. That means my MTHFR enzyme is only about 30% effective, compared to normal people. But my body is likely to make more of the enzyme to try and compensate.
Some clickbait sites try to scare you into visiting their sites frequently. But a lot of what they spout is extrapolation and speculation.
Here's what a real scientist (not a medical school dropout) says about it.
Rather than delving into the black box testing methods I suggest you should find out why it took so long for your diagnostic bearing in mind how far your disease has progressed. That is the same problem which many people face when they recognise they have a problem and go into the Doctor who has probably no idea of what is happening. I suggest have a common approach to assessment and diagnostic by the doctors/guidelines. Perhaps a complete vitamins / bloods / various other screenings with consequent savings for the NHS. Best of luck; remember the problem is not with the biochemists but with the system and their imperatives.
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