The only way to get definitive answers to questions about treatment about B12 deficiency is to ask a physician.
Thing is they all are confident in their answers, the answers are all different. Incorrect in different ways but definitive.
Good news is it possible with hard work to discover how to treat yourself and alleviate your suffering.
I disagree. In my experience most physicians know less than we do on this forum. But you are right about the ' hard work to discover how to treat yourself and alleviate your suffering.' Thank goodness we can find out all we need on the internet. I would be in serious trouble otherwise.
Charks, You and I are in agreement. I rewrote the post. I was trying to express that physicians were confident and wrong.
Scientist, not medic.
'Often in error, never in doubt' seems to be the watchword for many. This stems from their upbringing! Once they get a job, they are automatically assumed to know everything about everything. They assume they are experts.
My favourite definition of an expert? Someone who knows more and more about less and less, until they know absolutely everything about nothing.
I am an expert in soil science and wetland science and have the government licence to prove it. Some of us experts know we use a little bit of science, a little bit of art and a whole lot of smoke and mirrors.
We don't tell everyone as smoke and mirrors pay better. 😀
As a fellow scientist, I understand exactly where you're coming from on this matter. I don't use the 'I could tell you but then I'd have to kill you' as often nowadays.
Smoke & mirrors works well, but smoke in hospital environments is a definite no-no.
Stay well!
I never had any thing for doctors to really treat before 2+- years ago. I am amazed at the pseudoscience practiced under the guise of applied science.
I’ve had PA for 15 years and in that time met 1 dr who had good knowledge and he only had that knowledge because he had been to one of the annual conferences with Martyn. He was a locum at my surgery. He wrote me up for an injection every month then when I went in for my b12 the nurse said I couldn’t have it the dr had made a mistake this was outside protocols.
My B12 was 196 ng/L - with a range starting point of 197 ng/L. Soi was lucky enough to get injections started.
My GP got me an MMA test when not responding at all to the B12 injections and continuing to deteriorate - when this came back as raised, she diagnosed me with functional B12 deficiency, having already ruled out renal problems. She restarted my B12 at 3 injections a week (as close as she could get to EOD).
The nurses were nervous, having been asked to administer an unprecedented frequency, but each behaved differently:
They gave me 2 not 3 - as they were too busy to fit in the requested 3 injections.
One nurse treated me with suspicion - as if this had been my decision: she asked me once if the new regime was my idea or medical advice to the GP from a consultant !
One asked constantly asked about my "poor arms" - although I could not feel a thing when injected and each time had to ask nurses if they were finished. She enquired often about when I was going to go back to the GP.
One nurse admitted to having googled "toxicity and B12", read a lot about how B12 was used in huge amounts in medical emergencies to flush out toxins, also that B12 had no reported dangerous upper limit. Seems sensible if asked to do something you have never done before. After that, she was happy to help me get better. Whenever possible, I booked my injections with her.
I did go back to the GP - she was delighted with my progress, believed more was possible, and told the nurses to continue the frequency ! She asked if I would like her to talk to them - but I was, by this point, finally able to feel the injections- and so decided against asking her to intervene !
My 2 per week injections continued for six months. I later decided to self inject EOD, hoping to get more improvements, and later reduced this back to 2 per week. I have tried to reduce this further but any less does not help me and brings a return of symptoms.
Hi CherylClaire, my neurologist suggested I may have functional B12 deficiency too. What exactly does this mean do you know as I’ve been diagnosed with PA . It it the same thing?
No.
Functional B12 deficiency just means that somewhere along the B12 processing, there is a malfunction. This could happen almost anywhere along the process, but the result is that the B12 does not reach cell/tissue level in sufficient amounts. This means that a patient may have initial B12 levels that are in range or even high, but has presented with the symptoms of B12 deficiency.
In my case, I was treated for B12 deficiency but continued to decline after treatment started. My GP had my B12 retested and my methylmalonic acid (MMA) tested to find out why.
Methylmalonic acid is a useful indicator, as normally with any treated B12 deficiency, the injected B12 would link up with the MMA amassing in bloodstream and together move on to cell/tissue. This would be expected to reduce MMA to normal levels fairly rapidly - certainly the loading dose should clear any backlog. If there is a B12 deficiency, without b12 treatment, unattached MMA can continue to rise, and can reach very high levels.
Although my serum B12 was by then, as expected, over the measurable amount (>2000ng/L), my serum MMA was still raised: 351 nmol/L (range: 0 - 280 nmol/L). The testing laboratory confirmed her diagnosis of functional B12 deficiency. This is when the frequent B12 injections were started.
To ensure the correct diagnosis, renal problems must be ruled out - which can be done early on with a blood test. Small intestine bacterial overgrowth (SIBO) should also be ruled out. This was done at a later stage by breath test.
My MMA remained raised (between 350 - 400 nmol/L) for three years - on the sixth test, it was found finally to be normal - at 205 ! This final test was carried out by Adult Inherited Metabolic Diseases who were looking for a genetic cause for the raised MMA - but could not find anything that would help. Had they found anything in DNA tests, they told me that their advice to my GP would have been B12 injections twice a week for life. By this stage, I was already self injecting every other day (EOD) - and believe that this is what finally reduced my MMA.
As for cause - who knows ? I had saliva duct strictures, which causes problems with saliva production. This can contribute to initial B12 deficiency as the saliva plays a protective role for extrinsic factor (B12 in food) - but would not explain a functional problem after treatment.
This seems to be quite a rare condition: my GP knew what to do because she had had one other such patient in her career, ten years before me. For this reason, you will not find much research or even many GPs who understand this.
There is a paper by M R Turner and K Talbot, Functional Vitamin B12 Deficiency, published in 2009 in Practical Neurology under the heading Neurolgical Rarity. It is based on a single case study.
MMA tests can more easily be requested by consultants than GPs: my GP tried three laboratories before successful. I'd ask the neurologist for MMA test - and then tests to eliminate renal problems and SIBO as causes if results are raised.
I hope this has been of help.
Thank you it was helpful. I have never heard of anyone having raised MMA levels. In my reading I had come across the test and asked a specialist if it had been done. Then my GP must have been told to order it as it was ordered. The GP said "It is one more piece of information that gives us something to look at. Obviously had no clue. It was normal so I forgot about it.
The DNA people said that they had patients presenting with MMA results several times higher than mine. I'm guessing that these may be the patients who were misdiagnosed early on and their B12 deficiency continued unrecognised for years.
It took me self injecting every other day for over two years to get MMA to normal levels. I now self inject every fourth day - which contains my symptoms to "mainly manageable" . I now don't need the other supplements - folate, ferritin etc - but have vitamin D and Raloxifene on prescription for osteoporosis (now reduced to osteopenia !).
Have tried magnesium bath salts now and then, and currently trying co-enzyme Q10 supplement (as once suggested by a neurologist) - but haven't noticed any difference - and can't now remember what I was aiming for there ! Maybe my slightly worrying deteriorating eyesight - especially evening colour problem when painting. A shock on the morning inspection to discover how "wrong" the colours turned out. Looking forward to lighter evenings soon.
Thankyou so much for this . Extremely helpful.
I was told my results were fine.. my results of b12 was 268 the range is 211- 911 so I am very low .Because of ranges i am not deemed deficient.Just windered if anyone else had a b12 range near 268,and if so were you deemed deficient .thank you
My mother had P.A and was given regular jabs.This went on for some years and at that time, there was no connection to internet.
After several years GP told Mother that her blood test was fine and she did not need any more B12 injections.
Both my sister and myself thought that was a 'good' decision but it was NOT as Mother developed stomach cancer that caused her demise and the pleading my sister and I had to do to demand better pain relief at end-of-life was a strain..
I also have P.A. and my GP said I can have as many B12 injections I feel I need. I get a monthly injection.
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