Hi, I have a couple of questions that would help with managing my father's PA and thought there might be someone out there that has relevant experience. We are UK based.
By way of background, my father was diagnosed with PA in 1991 and has lived reasonably happily with 3 monthly B12 injections eversince. That is until 18/20 months ago when his "enlightened" doctor saw a "saturated B12 reading on a set of blood test results and decided he could move onto 6 monthly injections - usual story. Since them my mother has tried to convince us his symptoms are returning (anxiety, confusion, tingling, memory and so on). But it is now clear they are.
So armed with info from PAS and other sources I got in touch with his doctor, and after a bit of a battle, he has now changed back to 3 monthly injections of B12. He won't follow NICE and BNF guidelines and move to 2 monthly as there are "bad consequences" of too much B12 - he says! despite me furnishing him with all the relevant info.
Given that, my questions are 1, Does anyone know of a PA knowledgeable private consultant I could talk to about whether my father needs a loading dose given the time on a sub optimal injection frequency, 2, The thing I can't seem to get to the bottom of is the statement "although he has a high B12 reading it is not all available for him to use" ie therefore I assume he could easily be deficient in useable B12??? - why is some of this B12 he has, not useable.
I think I've found a pharmacy that will do injections in-between his doctor's injections, so I'm going to up his frequency whether his doctor likes it or not.
Thanks for taking the time to read this post and for any help you may be able to give.
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Sounds like you're making all the right steps to do the right thing for your father. And sorry that you have to face Dr's ignorance when it comes to B12.
It's a devastating reality that next to no-one on planet earth receives adequate training or education in B12 and what it does in the body. Because foods have been fortified since the 1970's, rates of PA dropped. And Dr's moved onto other things assuming it was a 'niche' topic. So they, and most of the world, understand very little about B12's impact on the body.
I'll try to help but I am not an expert or medically trained.
1, Does anyone know of a PA knowledgeable private consultant I could talk to about whether my father needs a loading dose given the time on a sub optimal injection frequency,
Unfortunately, no such consultant exists. I think you could still try to email Dr Joseph Chandy but he is a volunteer and no longer a serving GP. But his advice may help. You can find his email address on the b12d.org website.
My personal view is that you'd need every other day injections until your father is better. These are the NICE guidelines for neurological complaints (that you've described) that your Dr should be following. So you could try to push for those
2. The thing I can't seem to get to the bottom of is the statement "although he has a high B12 reading it is not all available for him to use" ie therefore I assume he could easily be deficient in useable B12??? - why is some of this B12 he has, not useable.
My understanding is that levels need to be sky high to get into the cells - some say maintaining in excess of 1,000 for healing to occur. It's not clear why this is, but it's almost like a water tank system, where it will only make a difference once it's spilling out of the tank.
So there could be a good amount of B12 in the blood but the body won't recognise it and it will sit in the tank and slowly leak away ( in the urine).
So every other day injections for the foreseeable future is what's needed. Many people here self-inject, since it's become harder to get B12 injections. But it could be worth going back to the GP and asking him what the bad consquences of B12 are.
Every medical person I've spoken to has said something similar - placebo, you can have too much, you don't want to overdose. All of these are false. It's just that no-one receives enough education on B12 to inform us correctly. Scary, really. But we must solider on and do what's best for ourselves.
Can’t agree that the cases of P.A. have dropped since the ‘70s because of food fortification . Fortification of food with B12 will not affect P.A. patients . . They need injections . I think that you meant to say that straightforward cases of B12 deficiency have dropped .
But we are also up against the dual meaning and double interpretation of the phrase Pernicious Anemia.
On one hand its true that autoimmune gastritis leads to Pernicious Anemia as an anemia. As does does inadequate dietary intake.
So are the reporters saying they are seeing less PA as in 'B12 deficiency anemia' or do they mean autoimmune gastritis?
See the above link as an example.
I think that fortified foods have reduced the incidence of what we now understand PA to be because there is generally better nutrition due to fortification. And therefore there is a lower likelihood of autoimmune gastritis from perhaps a lower chance of problems resulting from an inadequate supply of B12.
Since there is no single diagnostic cause of PA/autoimmune gastritis, I think it could well be true that there are today fewer manifestations of PA compared to the 70s.
So I think its about cause and effect, i.e. fortification very likely did reduce the percentage of PA in terms of PA/autoimmune gastritis caused by malnutrition and lack of B12 in everyday foods (marmite, corn flakes etc).
Sorry to hear about your father's problems.Nobody is actually sure why some people need B12 injections more frequently than others. Nor is anyone entirely sure why some people can be symptomatic even when they have sky high serum B12 levels.
However, problems with cellular use of B12 when serum levels are high is a real thing and real enough for symptoms of b12 deficiency with elevated levels of serum B12 to be an indicator of some conditions that will cause rising serum B12 levels, eg liver damage (stores of B12 can be dumped in one go) and kidney damage (levels build up because the kidneys don't remove excess B12).
Please note that not everyone responds in this way but signficant numbers of people do and it whilst it may not be the case for everyone it does seem that for many the problems go away if serum B12 levels are raised even more. So it looks like raised Serum B12 can affect the efficiency with which B12 is transferred to cells which is why raising levels further causes means that enough does get through.
It's a pity that your mother was not listened to by the GP over the course of the past 20 months. An injection every six months is not a frequency advised by any medical guidelines that I have seen, so the outcome is not surprising. In the absence of any GP monitoring when halving your father's treatment, your mother was the only person filling that role.
I agree with Pickle500 , and NICE guidelines, and think your dad would benefit from every other day injections until no more benefit can be had, which is the frequency required for B12 deficiency with neurological problems. Let's hope that he improves sufficiently that no permanent damage has been done.
There is a suggestion for a review at around three weeks. I believe the intention here is to discuss whether improvements are being experienced at this stage. I doubt that anyone would expect nerve damage to have totally repaired at this early point.
I wish you and your family the best of luck with this - it can be a real battle getting useful treatment.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Local B12 deficiency guidelines
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
There may be something useful in threads I've linked to below
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
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