What should we be tracking in case of issues or to build a history? Since my GP denies I have a problem ("your B12 is through the roof") nobody watches my health and I don't feel that well.
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Other than the personal tale below which you may ignore - in general - should we be getting anything checked regularly if we have B12d and other absorption problems?
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My GP has refused to treat me since loading doses in 2016. The neurologist said I'd been deficient for years (I had neuropathy for 12 years before diagnosis) and she was confident it was an absorption issue (because B12 so low). GP says I don't have PA as IF test negative. So not only do I receive no treatment but there's no monitoring of my status. I SI once a week and take folate and vit D (as was deficient in both)
I know from my physio that my left leg reflexes vanished about 18 months ago. I seem to be terrible at healing, with injuries lasting for years, maybe forever. (GP says it's my age, 59 - I have trouble dressing because of arm pain after covid jab 3 months ago, and can no longer play the piano or lift a cup of coffee because of hand pain). I feel too young to be giving up like this. I've always been fit and energetic.
I request annual blood tests and have seen my MCV gradually reduce to the top of the normal range (took 5 years). Thank God for SI. I also know from MRI scans that my bone density has gone from awful for my age to ok (ostoeporosis diagnosed aged 38 has slowly reversed).
So I see trends - mostly good which I attribute to SI.
But is there anything else I should be tracking over time? I wish my muscles weren't so sore.
I pay to see a physio regularly because of multiple injured muscles that just don't repair, and she keeps excellent records. I keep my own blood test records. I am out of work and am not sure I feel well enough to go back to work even if I had the chance. I feel I should try harder.
I wish I knew why I feel so rubbish - if it is B12, a related absorption issue or something else, and how would I know? I feel some monitoring should be done but don't know what.
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Mashie44
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Peder, are the b1 tests accurate? I am definately b1 deficient and taking it has helped tremendously, but I was found to be high, yet still getting the benefits from it. I'm one who is careful about how I approach each supplement I take. I research and all. I'm curious how you have tracked your b1.
Below stolen from Mayo Clinic on testing Thiamine:
"Whole blood thiamine testing is superior to currently available alternative tests for assessing thiamine status. Serum or plasma thiamine testing suffers from poor sensitivity and specificity, and less than 10% of blood thiamine is contained in plasma. Transketolase determination, once considered the most reliable means of assessing thiamine status, is now considered an inadequate method. The transketolase method is an indirect assessment. Since transketolase activity requires thiamin, decreased transketolase activity is presumed to be due to the decrease of thiamin. However, the test is somewhat nonspecific, as other factors may decrease transketolase activity. Transketolase is less sensitive than liquid chromatography-tandem mass spectrometry), has poor precision, and specimen stability concerns."
"Thiamine diphosphate (TDP) is the active form of thiamine and is most appropriately measured to assess thiamine status. Thiamine diphosphate in circulating blood is present in erythrocytes but is undetectable (present in very low levels) in plasma or serum.
-Liquid chromatography-tandem mass spectrometry analysis of TDP in whole blood is the most sensitive, specific, and precise method for determining the nutritional status of thiamine and is a reliable indicator of total body stores."
Thanks - Sounds like you've found quite a lot.. I had pins and needles for 12 years before I asked to be tested for diabetes -- and my GP cleverly tested for B12 (he'd just found a case after 2 years for someone suffering a 'mystery illness' - I was lucky. My feeling too is that long-term PA is a cause of a lot of my troubles. I try to be positive - my great-grandfather died of PA around 1920, and I suspect my father and aunt both had it, from their untreated symptoms. At least we can treat ourselves.
Seriously, I agree with Nackapan - a fresh pair of eyes on this might help.
I had an excellent supportive GP who regularly tested the important things - for me, that was folate, ferritin, vitamin D and thyroid. The B12 never, as she said that would be a waste of time. This because she expected B12 to be through the roof.
The frequent injections worked, but as with you, improvements were slow:
After about three years, my osteoporosis of the spine reduced to osteopenia - with Raloxifene and vitamin D on prescription, which continues
After about three years and 6 tests, my MMA (methylmalonic acid) dropped to within range.
After about two years, my folate and ferritin levels, initially low-range and erratic after treatment, settled down and stabilised at healthy levels.
There is no point in a primary care referrral to secondary care unless the GP is willing to work with the results. So if your neurologist says you have been deficient for years, the GP should have treated you as B12 deficient with neurological symptoms: medical guidance is to treat this with every other day (EOD) injections until no more improvement can be gained by doing so, and then an injection every 2 months. Nerves can take a long time to repair but no/under-treatment can lead to further deterioration or permanent damage.
My GP requested 3 injections a week for me -because she got my MMA tested when usual B12 regime did not work and it was found to be raised. She diagnosed functional B12 deficiency, having first ruled out renal problems as a cause for raised MMA. Once stabilised, the maintenance frequency was to be an injection a month. Because nurses could not fit in 3 injections a week, I got 2 - but this was enough for everyone to recognise the positive effect: partner, friends, family, employers, work colleagues and medical professionals. My GP was delighted and so this regime continued for six months. At this point, I was put on the 1 per month maintenance injections and sent to secondary care. Because I had "blipped".
There was more to be had, but by then it seemed likely that self injection was the only way to get that bit extra back. So I started with EOD injections, and after a couple of years reduced this to every three days (or back to the frequency I'd had successfully for 6 months from the NHS) - and have never really managed to reduce this futher for any length of time. Never mind.
You are too young to give up.
Whether you have B12 deficiency because of PA or something else, it feels the same. However, since only 40-60% of those with confirmed PA have IFab positive test results, it would not rule out PA if you had a negative result. Martyn Hooper, founder of the Pernicious Anaemia Society, had three tests before getting a positive result. If, for instance, you had next to no intrinsic factor, why would you have antibodies present ?
My ability to heal has improved, my susceptibility to infection has lessened - having said that, I'm currently recovering from strep A ! Key word here is "recovering".
Some things are not as they were but age is not the culprit.
Thanks, Cherylclaire - that's really cheering and informative. Sounds like you got sensible and helpful treatment. I understand it costs the NHS a lot to inject this often, and I'd rather do it myself for convenience (GP is 7 miles away), but it feels as if I'm abandoned because I do that.
The GP who referred me retired soon afterwards. The one who ignored the neurologist is the practice 'specialist in neurology'... when I told him about false negatives for IF he just said 'the NHS wouldn't use it as a test if that were the case'. I am now in disgrace because I asked never to see this particular GP again (actually for years I have avoided him anyway as I think he is an arrogant twit - if offered an appointment with him I opt to wait). The practice clearly don't like me, though and they don't like that I SI.
Some doctors seem to have a primitive rosy eyed view of blood tests in general, that they are infallible and will always pick up any problems without possibility of error. But once you learn a little more about blood tests you find there are actually many caveats and reasons a result may not be as useful as it appears at first to be. Its kind of like a blind faith in measurement - but this is not science....you have to understand whats being measured, what can affect the results, whether the thing you're testing will reflect tissue levels. On and On. They live in a simple fantasy world where single tests and single numbers provide infallible answers. Reality is a lot more complicated.
That's a difficult question to address. I wouldn't say I feel awful. I hurt a lot from injuries that just don't heal. But I don't have brain fog any more. I truly don't know if having a job would be an impossible challenge or help me feel stronger - I lost my job because of protesting safeguarding issues and corruption, which was a shock, and now I haven't worked for 3 years and I've had covid and pneumonia and I feel far older than 3 years ago...
I am a scientist. I can't see a reason I should need to inject this often and I'd like a reason - plus I am put off frequent injection by the antipathy the medics have for it (not the idiots, people like the neurologist who was the most knowledgeable person I've spoken to on this journey).
If they think it isn't needed, I'm looking for some other cause of the failure to heal. But I don't know where to start looking.
I now believe that the answer is not yet there. But it's close.
I have seen, in the past six years, several haematologists, a dietician, three gastroenterologists, a neurologist, two Oral Medicine consultants, a rheumatologist and a lovely team from Adult Inherited Metabolic Diseases. I have had gastroscopies, colonoscopies, a nasendoscopy, brain scan, electric nerve test, Dexascans, ultrasound, MRIs, breath tests, salivary duct procedures, 24 hr heart monitor and DNA tested.
Nowhere else to go really.
But..... if I hadn't seen all of these people, I would never have met the senior ENT consultant who told me that it was obviously B12 deficiency, that I should continue to self inject frequently and that I must be persistant, that it would take a long time to get improvements. I would have given up. He also agreed with me that salivary duct strictures, compromising haptocorrin production, would mean B12 as extrinsic factor (from food)would be unprotected - causing b12 deficiency.
No genetic reason for my raised MMA were found in my DNA.
All the "something-elses" having been eliminated, all that remains for me is to try to get back all that I can of me, to recognise when that is starting to slide out of reach, and adjust accordingly. I've found no patterns in six years of daily recording of symptoms - so I've now stopped making charts.
My supportive GP has now left the practice. I am not minded to start again in finding another with a similar mindset. This means that no-one is doing my regular blood tests currently.
I am however still under the care of my Oral Medicine consultant - who has completely reversed his opinion about my B12 injections. His previous concerns about my "sky-high" B12 serum level having disappeared; he now tells me that my body would not be able to function without this frequency -and that tablets would do nothing at all !
I have now asked him to look for a haptocorrin test for me.
What I'm saying is that you might find answers out there, but not necessarily where you expect to find them. This is not just about my individual search for answers, but my ENT consultant's and my Oral medicine consultant's too.
Change is going to come. The revised NICE guidelines, due out in November 2023, might be the first written evidence of that. Let's hope.
I used to have terrible pain when injected into my arm - so bad I nearly fainted. The solution was to have the injection in my upper leg/bottom and since then no pain at all. But I had to fight for the change. 😆
@nackapan so sorry you are in thet much pain. This is a horrible state to be in. I also used to cycle (long distance touring). I've been wondering if I just set off on my bike and persisted whether I would improve in health... sadly my experience generally has been if I keep trying I just have more pain.
There is a new GP who I think might be 'educatable' -- People's suggestions make me thing this worth trying. He isn't totally ignorant like most though he believes his senior partner 'specialist' that negative IF test is conclusive. I feel if I persuade him to read up he might get interested. Surely treating B12 well would be cheaper for any practice than the fancy drugs or surgeries we've been suggested.
Does anyone know likely numbers of undiagnosed B12? I imagine it is quite high and therefore a waste of NHS resources treating symptoms as something else.
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- in general - should we be getting anything checked regularly if we have B12d and other absorption problems? 
Are you a, or do you know of a, GP Doctor that reads this forum?
Update on high b12
GP questioning why serum b12 above range if body gets rid of excess b12.
