Hi! I’m new here and learning so much from reading all of the posts here.
I was diagnosed with low B12 levels earlier on this year, although my PA antibodies came back negative. I was put on injections, and was meant to have 6 over 2 weeks followed by 1 every 3 months, however my GP had to stop them after the 3rd loading dose due to becoming very unwell after the injections, and said to just go on to have 1 every 3 months now. She has run more blood tests yesterday to rule out anything else as after the 3rd injection I became very fatigued and that hasn’t eased after 3 weeks… has anyone else only had 3 of the loading doses? Is this normal? My GP is due to be calling me at hopefully some point next week once all of my blood tests have come back so we will be re-discussing all of this. As an aside, I’ve been diagnosed with non alcoholic liver disease early stages, and I had iron deficiency anaemia last year which was treated, and I’m under neurology and endocrinology too so as you can imagine it’s a lot to try and work through especially with being so fatigued!
Poor you, sounds like you have a lot going on. In regard to loading doses, it is common to feel worse before better when you start B12 injections. A vast number of people on this forum experienced it when they first started treatment. As I understand it the reason for this is that the B12 is starting to repair the damage done to your nervous system. The body is trying to heal, and the brain is receiving signals that it hasn't had for a long time. Think of it as your nervous system waking up. Also be mindful of your cofactors, and ensure your folate and iron levels are optimal. Also, potassium levels can lower when first on B12 injections so you should include potassium rich foods in your diet. After my very first injection I had the worst headache ever, but advice given to me was to eat a banana before my next injection and drink a glass of coconut water after. I did not have the headache again after an injection.
I would speak to your doctor again and request the full quota of the loading dose. Good luck x
I think it is just the B12 healing you. You may not need more injections soon although once in 3 months doesn't work for all and especially. My experience is to just have a shot when you feel the need, for e.g. your neurological condition worsens or you feel totally exhausted (this is different from the fatigue you are having which is probably just due to the healing process). Perhaps once-a-month for a few months should be done and then it can be reduced...
I agree with BeachArt, the symptoms you’re experiencing are very familiar to many people with PA. Generally speaking, you feel worse before starting to feel any kind of relief and, this also depends on how much damage from the insufficiency of B12 your body has had to endure. Request your B12 be given more frequently and if not, you may need to self administer this, as many people do on this forum. The central nervous system requires much time to heal and reverse the damage caused. My experience, I’m a year and a half of self treatment with more time needed still, everyone is different with their frequency needs. Persist with your B12 treatment and check your other deficiencies you mentioned and with time you too can heal.
What is happening with your MMA ? Is it raised/high ?
Methylmalonic acid (MMA) - this can build up in the bloodstream for a few reasons:
1) renal problems firstly - can be ruled in/out by a blood test. You have probably had an MMA test previously as you have had a liver disease diagnosis.
2) SIBO (small intestine bacterial overgrowth) - the bacteria can rob you of many vitamins including B12, is found by monitoring of a fasting breath test series, and can be treated with antibiotics although it can take a while to eradicate.
3) a lack or scarcity of B12 - as MMA will transport B12 from blood to cells and tissues, if there is insufficient B12, the link cannot be made and the MMA will continue to build up. The build-up should resolve itself quickly once B12 is introduced in sufficient quantity. The loading dose should be enough.
4) functional B12 deficiency - if, once B12 is introduced, the B12 and MMA in the bloodstream remain high and symptoms are not improving, this could mean that the link is not being made properly between the two. This is known as functional B12 deficiency and requires sufficient B12 for symptoms to improve. MMA will need to return to normal levels, and this may take a while despite increase of B12. This needs monitoring.
[There may be other causes of functional B12 deficiency - B12 goes through many stages before being effective at cell and tissue level, after all - and the exact cause can be difficult to determine for that reason, but I would imagine the treatment would be the same and a cure unlikely.]
You may well have had MMA tests to determine your liver problem.
I'm really glad that you are seeing a neurologist and an endocrinologist, also glad the iron deficiency was addressed. You have a lot going on right now and the more help, the better. B12 deficiency with neurological symptoms requires a different treatment regime (more frequent injections) to deal with any nerve repair.
With B12 deficiency, there can also be folate, ferritin, vitamin D and thyroid issues to contend with. These can all take a while to stabilise at more useful levels and need monitoring.
The liver disease has to be taken into consideration too. I'm sure that also comes as part of a wider package !
I'm not medically trained.
I had B12 deficiency initially, have been diagnosed with functional B12 deficiency after not responding to B12 injections and MMA found to be still raised. All other causes for raised MMA were ruled out by the above tests. Frequent B12 injections improved my condition and after three years, my MMA dropped into normal range on the 6th test. However, the need for frequent injections to control my symptoms remains.
Regarding "Although my PA antibodies came back negative":
IFab (intrinsic factor antibody) test: A single negative result is not able to rule out pernicious anaemia (PA) as only 40-60% of those with PA will test positive. Once a positive result has been given, this is 95% accurate - about as good as it can get as far as diagnoses go. Martyn Hooper, founder of the Pernicious Anaemia Society, had to have three tests before getting a positive result.
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Feeling worse after loading dose. 
2 months after loading doses
When to self inject after loading doses
b12 retested by GP after loading dose.
MMA test after loading doses
