I have B12 injections every 3 months and it was flagged that my B12 level was very high. I didn’t think that this was uncommon however the nurse didn’t inject me at my last appointment because of this. The nurse practitioner however has said that I still need the injections as my levels drop ‘impressively’ within a short space of time. Apparently it has dropped by 400 in nearly 3 weeks. Everyone seems to be scratching their heads as to what’s causing this.
I have asked if monthly injections may be better if we t drops so much in 3 weeks. Apparently my folate is also low. I have a vitamin d deficiency also which is being managed and suffer with endometriosis. I had a dodgy kidney function reading and also a dodgy liver function reading on recent blood tests but now apparently they are classed as ok even though the last person I spoke to said that kidney function was on the low side 🙄
Help! Thanks in advance!
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natnoo
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Just a couple of paragraphs from the NICE guidelines
"Measuring cobalamin levels is unhelpful as levels increase with treatment regardless of how effective it is, and retesting is not usually required.
However, cobalamin can be measured 1–2 months after starting treatment if there is no response.
Neurological recovery may take some time — improvement begins within one week and complete resolution usually occurs between six weeks and three months.
Ongoing monitoring is unnecessary unless a lack of compliance with treatment is suspected, anaemia recurs, or neurological symptoms do not improve, or progress."
Thank you so much for your reply. It's really good to have somewhere to ask these questions where people have experience and I am learning that I am not always in safe hands with the doctors unfortunately. Thanks again
Sorry to hear you are in limbo but take heart the cavalry are within this forum!
What are your B12 symptoms? Do these improve after your injections? Do you have any neurological symptoms … brain fog, tingling, trembling, numbness, pins and needles etc
When you say your folate and Vitamin D are low what are the levels? Are you being given supplements?
Hi there, Thanks for your reply. Yes I do notice an improvement after injections. Before my injection i felt like I was going to just fall down, I couldn't easily remember my wedding anniversary and previously I couldn't remember my pin number which i've had since my teens!! I was freezing cold and was wearing a ski jacket when it was 18 degrees outside. My hands have started shaking which is a new development but that is still happening even though I had my B12 injection a few days ago, I have had pins and needles in my hands previously but haven't had this for a while although my ankles do still feel heavy and swollen. I get awful pain under my ribs but not sure if this is related or due to another condition. My scalp itches and also all around my hairline but I had shingles when I was pregnant and I think this is nerve damage from the virus and not B12 related. I have been taking 4000IU of Vitamin D for probably about 4 years now. They have told me that folate is low but I havent had the results back for this yet and have to wait until a call from the doctor next week. I havent taken any folate supplement yet.
b12 levels drop quite precipitately after an injection, but after a week or so, should stabilise and drop only slowly. Are you taking some supplements that contain B12? These can also affect serum B12 values almost immediately.
Hi, Thank you for your reply. No I am not taking any supplements that contact B12. Thanks for the info about the sudden drop. I am learning all the time. Thanks again
Your GP appears to have put you on a treatment pattern for those without any neuro symptoms.
How many loading injections did you have when treatment started?
Are you a PAS member?
PAS membership is open to people worldwide and they do not need a confirmed PA diagnosis to join. PAS membership is separate to membership of this forum.
With both B12 deficiency and folate deficiency, were you ever tested for coeliac disease?
NICE (National Institute for Health and Care Excellence) guidelines for coeliac disease suggest anyone with unexplained B12, folate or iron deficiency should be tested.
I urge UK forum members to track down the local B12 deficiency guidelines used by their ICB (Integrated Care Board) in England or Health Board in Wales/Scotland.
If you can't find them with an online search or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which b12 deficiency guidelines are used locally and for a copy of or link to them.
Some local B12 deficiency guidelines in UK are not helpful, see blog post below.
Keep an eye on local B12 deficiency guidelines as they can get reviewed at short notice and are very likely to be reviewed after new NICE guidelines are published in 2024.
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Some UK forum members turn to treating themselves when NHS treatment is not enough.
Some get extra B12 injections from private GPs or beauty salons, some try high dose oral B12 but this doesn't work for some people and some as a last resort try self injection (SI). There are forum threads and pinned posts about SI.
There should be other useful info in pinned post "Various B12D/PA resources".
I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.
Wow, thank you so much for all of this info. It is much appreciated. Yes I am in the UK. I have been working through and reading with interest. I keep grabbing a cuppa and sitting down and doing a bit more. Thank you again!
The nurse should not have stopped your injection because your levels were high. The serum B12 test has quite a limited range at the bottom of the amount your blood will store. It may take a while for levels to drop into this measurable range. Just because your bloodwork showed that levels hadn't fallen into the measurable range doesn't mean that you don't have an absorption problem and the second test obviously showed that you do have an absorption problem.
The rate at which B12 is removed is faster when the levels in your blood are higher but because the range above the measurable range is so large using serum B12 is at best difficult to interpret if not impossible.
Thank you for this. So if you have an absorption problem does this mean you have pernicious annaemia? I'm not really sure what I have, all i have been told is that I need b12 injections for life as my levels were low. I think I need to ask some more questions.
There are many causes of B12 deficiency eg diet, Pernicious Anaemia, Coeliac disease, Crohn's disease, damage to terminal ileum (part of gut where B12 is absorbed), some medicines and drugs, excess alcohol intake and many more.
If you eat plenty of B12 rich foods then diet is unlikely to be the cause and it's more likely that there is an absorption problem in the gut.
"I'm not really sure what I have"
You could access your medical records to see what doctors have said they think is the cause.
You need more frequent injections. You go by your diagnosis and symptoms, not levels. They were wrong to miss an injection. It happens too often. That’s why I SI so I don’t have to worry.
Hi, yes this was my first thought that the injections aren't frequent enough. I will definitely mention this. I am learning that they are not always right and I know my own body. I haven't felt as bad as I have in the past few weeks so will be definitely trying to get a plan together. Thank you for your help.
Hello natnoo. Not sure about the kidney part, and don't know your age, but when I take B12 shots (or anyone does) your B12 lab tests are going to show high readings because the lab levels are going to indicate how high your B12 levels are in your active and circulating blood. The lab levels are not a good indicator of what your liver reserves are. Think of it as a hot water heater. When you've used up all the hot water, you must wait until the heater heats up the water again before you have any more hot water. Your reserves are in your liver, if/when those reserves are used up you have to replenish the B12. Doctors (and /or nurses) know barely more than you do about all of this and that's not just expressing anger for them, they really don't know.
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