Hi everyone..I’m desperate for your advice on this !! I’ve been retested for b12 / active b12 and come back at over 3000… I’m speaking to my doctor on Thursday but am worried sick that she will stop my injections !? Test was only done as I have continuing neurological symptoms that just keep coming !!!my symptoms point to the fact that I need more b12 but my results show I’ve got a high reading !! I know that b12 should not really be retested once supplementing but I know she’s going to say as it’s high I don’t need it !! Help !!!!
B12 tested whilst on injections - Pernicious Anaemi...
B12 tested whilst on injections
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Lowblow
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NO they should not retest once on B12 therapy, it is pointless to do so because it is obvious your levels will be high. If it were me I would point them in the direction of the guide lines the bit where it clearly states no need for further testing once treatment has started.
If they try and stop your injections tell them you will hold them responsible for any ill effects. We read over and over on here of this sort of incident. where patients injections are stopped. We have to suffer whilst they continue to make cut backs at our expense !
Good luck with your appointment.
You could try asking GP to look up latest BMJ Research document or print this out :
“Homocysteine or methylmalonic acid should normalise during the first week of treatment. Failure to do so suggests an incorrect diagnosis, unless renal failure or other causes of increases in the metabolites coexist. Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not normally required”.
(Bottom of page 4).
It might also be a good idea to ask someone close to accompany you on Thursday. for extra support🤞🤞 Good luck Lowblow
To Lowblow and Polaris :
Methylmalonic acid (MMA) still being raised after B12 loading injections can demonstrate that there is a functional problem - cells/tissue unable to benefit from the B12 introduced. A problem with the merging of B12 and MMA, so MMA and B12 will be high in serum after B12 injections but symptoms will continue to worsen.
Renal problems (blood test) and small intestine bacterial overgrowth (SIBO -breath test) would need to be ruled out as possible causes of raised MMA.
I was diagnosed with functional B12 deficiency by my GP, confirmed by the blood test laboratory. MMA remained raised (although not "high") for the next four tests despite B12 injections.
My MMA finally dropped into normal range three years after B12 injections started. These were not effective until I was given two injections a week. I later self-injected every other day and got further improvements. I now have reduced this to every three days, so returned to about 2 a week. Recent attempts to go an extra day have not been successful.
My homocysteine level was also tested but was "normal".
B12, after injections started, was almost always over measurable amount (2000 ng/L)- previously found to be under 200 ng/L, but not by much. Just enough to be under range. Lucky.
Thank you so much
This is what happens to me !! Because I’m not classed as anemic my doctor believes that I’m not b12 deficient.. she is adamant that to be b12 deficient I would have a raised mma which I don’t .., it’s so hard to challenge it when your not medically trained and don’t completely understand it all !! So I really appreciate your help and advice !! My doctor does not believe that all these symptoms can be related to b12 deficiency
Just noticed this on the back of Dr Chandy’s book, which you could quote :
“Deficiency is common and has devastating consequences for health but its symptoms are not well known by the medical profession. In consequence, patients are often misdiagnosed and treated incorrectly.
“Historically, vitamin B12 was discovered in relation to Pernicious Anaemia and this link has stuck, despite overwhelming evidence that patients may present with no anaemia at all but with a range of neuropsychiatric, neurological or other symptoms. In 1981, Dr Joseph Chandy, a GP in the North East England, came across his first case of vitamin B12 deficiency without anaemia. Through observation, he began to realise that this vitamin is far more important fo health than is generally understood.” …..
“His clinical experience of vitamin B12 diagnosis and treatment is unique in both breadth and duration. ….”.
“This book presents the results of his work, with reference to specific cases, including the Protocol for diagnosis and treatment that he initially developed in co-operation with Easington Primary Care Trust. Dr Chandy is now retired but continues to be consulted by doctors and patients all over the world interested in the curative effects of vitamin B12.”
………….
This Protocol initially persuaded my sister’s surgery to treat her with injections. 🤞🤞
Hi there, was that how they arrived at functional B12 deficiency, by testing MMA? Or were there other tests done. Functional deficiency is serem level elevated, due to poor cellular uptake at tissue level?
Hi I don’t know that they have come to the conclusion that I have functional b12 deficiency… I have confirmed PA and did have low b12 which led to if antibodies test .. when asking for more frequent injections my doctor mentioned that my mma was not high so therefore she does not think that I even have b12 deficiency!! She’s convinced that my b12 level is now up due to injections and these continued symptoms must be down to something else !!
Hi again Lowblow. If you tested low for B12 and an IF test confirmed PA, it would seem your GP may not be aware of the complexities of PA/B12 def. The PAS has a page for professionals and it would be worth joining, if not already a member, and printing this off too.
I believe Martyn Hooper, Chairman, PAS, had two or three IF tests before diagnosis confirmed.
Sally Pacholok (author of “Could it be B12?”, advises patients and their families to be polite but assertive. ……. Not easy, I know 😟
I first went to the GP at the start of 2015 with lower back pain, left-sided abdominal pain, fatigue and daily diarrhoea. This all got worse and so I was put on a 2 week pathway for bowel cancer. Luckily it wasn't cancer. It was later discovered that I had B12 deficiency ( 196 ng/L with a range starting from 197 ng/L ) so I was treated with injections. Also three months of treatment for low folate and ferritin. Also later prescribed vitamin D and Risedronate (later changed to Raloxifene) because osteoporosis of the spine and osteopenia of the neck found.
The six loading B12 injections did not seem to make any difference, the maintenance dose of one every three months ? Felt so much worse, worsening symptoms, more symptoms and looked worse: GP suspected functional B12 deficiency, which she had encountered in a patient ten years previously, so thankfully knew what to do and remembered about MMA test. Difficult to find a hospital able to test, but successful on her third attempt. My B12 was over 2000 ng/l by then, my MMA was raised, my renal tests fine.
Later, I was sent to a haematologist, but the first thing that happened on laboratory confirmation of GP's diagnosis was that my B12 injections were upped to two a week. It was clear that this rapidly improved things for me and so this treatment was continued at the same frequency. It was only six months later, when I deteriorated again, that I was sent to a haematologist. My injection frequency was reduced to one a month, which I'd been told was going to be the maintenance frequency for my condition.
The haematologist tested my MMA four times, each time it was still raised. I was sent to a neurologist who did a brain MRI and electric nerve tests, and for a small intestine bacterial overgrowth (SIBO) breath test. The report to my GP told her not to give me more B12 than the recommended injection every two months. It was decided that the raised MMA was probably just "my normal".
I started self injecting at a frequency that I hoped would make a difference: every other day at first. I told my doctor the next day. I was still trying to keep my job.
Eventually, I saw DNA specialists - by which time I had an MMA level (the sixth test result) that was very normal at mid-range. It had taken three years. No reason for raised MMA was found in my DNA.
I have reduced my injections to one every three days. It usually is enough to control most of my symptoms.
May I know if your symptoms improve? I have a very rsised persistent MMA
I still self inject every three days. This seems to keep my symptoms mainly under control.
I didn't get well enough to go back to my full-time post. My employees were very supportive and organised a phased return for me , but I never got beyond 2 days a week and eventually took voluntary redundancy during Covid.
I still have some cognitive problems and can have sensory overwhelm, so have adapted my lifestyle a little and been honest about my limits with others ! A lot of symptoms have gone (as long as I continue self-injecting frequently) or are rare now. My osteoporosis of the spine has been demoted to osteopenia, which is probably the result of daily Raloxifene and vitamin D on prescription and plenty of walking - but who knows ? Still, good to know that that is possible !
If you have a very raised persistent MMA, you should be tested firstly for any renal problems and SIBO (small intestine bacterial overgrowth) which also affects your B12 and other vitamins and can be tested for by use of a fasting series of breath-tests taken over 3-4 hours, results charted and interpreted by medical specialists. This can take a while to get - but really important to have renal problems ruled out for you first - which is a simple blood test.
Thanks gor getting back yo me, i tedted for renal no isdue but not tested for sibo. My mma tedt should be under 1 but it was 17 and now 9 after daily injection. My symptoms msinly is crawling pins and needle started with my hands and spread all over. 🥹 what were your symptoms?
Firstly, worsening exhaustion, lower back and left hip/groin/abdominal pain and diarrhoea - which is why the first thing that happened was that I was put on a two-week pathway to rule out bowel cancer.
Tiredness and pain being difficult to quantify, I'd say that I was exhausted from when I got up and went to work to when I got home and did nothing until the next day aside from a lot of sleeping. The pain meant that I could not stand up straight for more than a few minutes, although I did not have a "sitting down" job. If I had to stand without support, my legs would shake. All of it was a struggle. As it worsened, I was sleeping for about 14 hours a day, and by then unable to work at all.
This all crept up on me slowly in the beginning, so I did not go to the GP. It is easy to think that tiredness is to be expected if you are busy and getting older. But there is a stage at which you cannot ignore it further. Other symptoms followed more rapidly: memory and cognitive issues, dizziness, confusion, hair loss, bleeding gums, air-hunger.
Nothing else except mild B12 deficiency was found. Low folate and ferritin and osteoporosis of the spine were found later and treated, monitored. My MMA was tested because I was not responsive to the B12 treatment given and continued to get worse.
Because I had raised MMA - between 350-400 nmol/L (range 0-280 nmol/L) - and had no renal problems, I was diagnosed with functional B12 deficiency by my GP, confirmed by the testing laboratory. B12 injections were restarted at 2 a week.
My MMA was tested 6 times over 3 years - it stayed raised until the 6th test, when it finally dropped into range. During this time, anything else as a possible cause for symptoms was eliminated by various tests and consultant appointments: Coeliac disease, SIBO etc. My folate, ferritin and bone density continue to be monitored.
If you have worsening pins and needles, I would ask your doctor to send you to a neurologist to find out whether your nerve problems are due to B12 deficiency. This damage can take a long time to repair and should not be left. An MRI scan on spine might show damage to the myelin sheath that protects your nerve bundle and if you have any issues that could be related to the brain (such as those I have listed above) -a brain MRI scan would be useful too. Electric nerve testing would be able to show if any large nerves (hands and arms, feet and legs) are affected although damage to smaller nerves in these areas would not necessarily be picked up by this.
Were your hemocystrin raised as well? Did your symptoms got better after mma is back to normal?
As far as I remember, my homocysteine was only tested once and I was told that it was normal.
Some of my symptoms remain, but mainly under control for me, as long as I continue to self inject every 3 or 4 days.
May I know if your symptoms cause by b12 defeciency you think? Also did your have sensory issues like paresthesia? 🥹
PS This is the full section of BMJ Research document:
“How is response to treatment assessed?
Patients often have a sense of improvement within the first 24 hours of treatment; however, the haematological response can take several days before the effects are first noticed and up to two months to complete response.3
Initially, a full blood count and reticulocyte count after 7-10 days of treatment is useful to document the response, and a further check should be done after eight weeks to confirm a normal blood count. When there is inadequate reticulocytosis, an incorrect diagnosis may be responsible. Within eight weeks of treatment the mean cell volume should have normalised (77-95 fL). Iron and folate status should be checked because coexisting deficiency is often obscured in vitamin B12 deficiency.22 29
Homocysteine or methylmalonic acid should normalise during the first week of treatment. Failure to do so suggests an incorrect diagnosis, unless renal failure or other causes of increases in the metabolites coexist. Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not normally required.”
Sorry lowblow, I also forgot to add BMJ research document Summary points which, together with UKNEQAS guidelines, (will look up), should surely deter GP from stopping your injections :
………..
"Vitamin B12 deficiency is a common but serious condition
Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment
***There is no ideal test to define deficiency and therefore the clinical condition of patients is of the utmost importance
There is evidence that new techniques such as the measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency
***If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features."
………………….
It has sometimes helped to write a letter with history, symptoms and relevant research before any appointment and I cannot stress enough that taking someone close for extra support/witness is probably really important, especially at the moment.
I also had the inexpensive but detailed, Dr J. Chandy’s book, “Vitamin B12 Deficiency in Clinical Practice”, sent to the surgery. This prompted them to offer Intrinisic Factor test (only 40/50% reliable though). Indian doctors usually have more knowledge of this disease and know, “how essential it is for the healthy functioning of many body systems, especially the nervous system”……..
You may find, as I and many others on the PAS forum did that, if your GP will not listen or provide adequate treatment, your best and least stressful option may be to self inject.
Found it:
UKNEQAS
pernicious-anaemia-society....
Thank you so much Polaris for taking the time to list this information and help me !! Much appreciated and so very interesting information here
I don’t have the confidence to challenge my doctor as i don’t understand it enough !! I feel intimidated as she should know what she’s talking about so then it’s hard to challenge but I come away every time knowing that what she’s said is incorrect !! It’s so frustrating
The paper "The Many Faces of Cobalamin (Vitamin B12) Deficiency" has a great list of misconceptions/falacies related to b12d/pa. Print it out, take it with you, and if needed show your doc Table 1.
mcpiqojournal.org/article/S...
I fully second what jillymo & polaris said. Good luck!
Also Get a referral to a neurologist. Ask your Gp reason for testing and to investigate what else might be going on if they don't think its b12 related???
My b12 was done as I requested folat.
They are done together.
Mine was over 2000.
That being the upper limit if the test.
It stated b12 replete
It wasn't used to stop my b12 Injections
If nothing else found more frequent b12 needed not less!!
Hi nackapan
Thank you for your response, I have a referral to neurologist but my appointment is not next year !! Crazy ah !! My doctor seems to recognise that I am suffering from neurological symptoms but doesn’t accept that they are related to b12 deficiency .. now that my results have come back so high I feel that this will add to her thinking that my b12 is now fine ! That is my worry.. I was not diagnosed for over a year and was actually only 139 a year before that so I’ve been low end and declining since 2019 !! Is it that these neurological symptoms are now permanent do you think ? I don’t really understand it myself !!
My bloods were over 2000 when tested. I saw a specialist endocrinologist. Bloods should not be tested once jabs have started. My bloods were high but I still felt awful and needed more regular injections as I have functional pernicious anaemia. Meaning my bloods are false high and I'm not actually absorbing the jab enough. I'm always running low. I now self inject weekly. Good luck. Stand your ground and see a private specialist if possible.
Hi! Great thread! Do you know why you don’t absorb all of your B12 injections? My natural path is trying to figure it out as I don’t seem to either.
I started out si 3x per week (methylcobalamin) and the large blood spots/bruising (purpura) on my arms went away. Less than a year later they returned. I began si 4x per week and, again, they went away only to return months later. I’m now si 5x per week. They have diminished but not gone. They are very painful and sting and burn for days after the minor infraction.
My Homeocystein is within range but my MMA is very low. Folate is too high so I’ve stopped taking this for a while.
I still don’t feel well but am grateful it’s not worse. I have MS so I already have a top neurologist that is aware of PA and has helped me a lot.
I am being evaluated for small vessel vasculits but my Natural Path believes I’m low on some nutrient or nutrients that may be causing the problem, My lower legs are bruised swollen and painful. I landed in the ER Saturday from my large puppy ramming me in the back of my calf. The bruise on the back of my calf is raised, black and huge. Too much trauma for a mild injury. Somehow I managed to sustain a cut from the incident on my lower leg requiring 8 stitches. My skin suddenly tears way too easily.
All this began 5 years ago. Purpura, edema , and an intolerance to most food. Could all of this be related to PA….? Hmmm. Vasculitis? I was diagnosed with PA 2 years ago after I dropped from 125 to 115 in a matter of weeks (I’m 5’9”) and no longer had the energy to run. I’ve been a long-distance runner for 40 years - very slow with the MS but I was out there and feeling ok most days.
I tested positive for IF antibodies the first time PA was suspected. Can you test positive if it’s negative? The rest of my blood work is good.
Thank you all for the recommended reading. I will read those articles now and see if I can spot something that makes some kind of sense to me and my doctors.😊 Wishing you all a wonderful day.
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