hey, hoping someone with some b12 knowledge can give me some advice for when I see my doctor.
Last year I was having some b12 injections paid privately, my last one was in early August. They actually made me feel better, but had to stop because of cost.
Then in October I started getting severe deficient symptoms. Dizzy spells, vision problems, no balance, achy limbs, restricted breathing , pins/needles in hands and feet at night. Few more that I’ve had for years. I am 44 & think I might be peri as also had a lot of them symptoms.
After suffering for a while, I had all my bloods done at my GP Surgery, all results normal apart from serum b12 was 2300mg/L. The folate was invalid so I’ve had to do another blood test, the doctor has already booked me in to speak to me. Could the b12 still be in my system after stopping 5 months ago?. I also have Herbalife shakes every day, that have b12 in the powder.
I started taking magnesium, vitamin d and primrose 4 weeks ago & the dizziness/vision/balance problems has mostly gone but still feeling not right. Sorry for a very long post.
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How much B12 is in the Herbalife shake? Serum B12 will be high on any kind of B12 supplementation, so the shake might be causing the high B12. 2300 is beyond the range and happens only with supplementation. Shots 5 months ago would have settled by now and would not cause a high serum B12 now.
The time it takes for B12 to clear your system from injections is extremely variable. Although the average is 1 month with cyano and 2 with hydroxo it can take years in others, and be much shorter for other people.
The recommendation with injections is that you wait at least 6 months before retesting but some will still have high levels over 6 months later.
Is mg/L the right units or do you mean pg/L? 2300 mg/L = 2300000000000 pg/L which is astronomically high. Even 2300 pg/L is high. There are some serious things that can cause high B12 but it seems more likely it is because you are supplementing. But the amount in the shakes is only 1mcg (the one I googled). People with PA who use sublingual B12 are taking in the range of 1000mcg because we have problems absorbing it, and with this huge amount, a little bit gets through.
Sorry- it cannot be mg/L. Mathematically that makes no sense. The normal range is 160-590 pg/L so 2300 pg/L is believable but far out of range but since 1 mg/L is 1000000000 pg/L, 2300 mg/L is not believable. That's the mathematician in me speaking (I am an adjunct professor of math).
I am not a medical doctor. Just a computer science who loves researching medical things. I think you are going to have to ask your doctor about all of this.
You are still supplementing with B12 in the form of shakes. Your folate was invalid. So this covers a multitude of sins which include the bottle was damaged, it broke, the machine to analyse it was not playing ball, once fixed the sample had coagulated. There are lots of reasons.
Your treatment has had a stop-start approach which is ineffective. PA/B12D needs consistent treatment. GPs have very little training in nutrition.
You have started taking magnesium, vitamin d and primrose which are called co-factors. This have been effective.
It is your body, you have your own unique symptoms. Start learning about PA/B12D, joining the Pernicious Anaemia Society. Sally Pacholok has written a wonderful book.
With regards to the high reading, you are supplementing but also in science, there are False-positives. A number on a screen tells nothing of your symptoms. Gambit62 has given an excellent response.
Many of us have had to fight for diagnosis and fight for injections. So, we do what is necessary.
They actually made me feel better, but had to stop because of cost.
I often ask, What price would you put on your health ?
GP Surgeries nationally allocate on average £155.46 per registered patient. Many of us who are U.K. based import from Germany because :-
1) Our levels are ‘in range’.
2) We can only get injections every 3 months which is no way near enough.
3) We have been put onto tablets.
4) We have erroneously been told by the GP Surgery that we have been cured.
5) We have had our B12 levels re-checked when treatment has already started. There is no point, our levels will be high. Doctors wrongly believe we have enough and can store it. We cannot, that is why we have the disease/condition. So, our treatment is stopped.
It’s truly CRIMINAL .If only we could get a 4 part documentary on TV with the many stories members of this forum could tell about their (mis)treatment and the dreadful consequences thereof , something positive could happen .
I spoke to a TV producer last year regarding PA/B12 deficiency. Personally, I would like Louis Theroux or Stacey Dooley to undertake some Investigative Journalism.
The NHS is in a state of permacrisis - permanent crisis. Front-line Staff have all gone on strike. GPs are becoming unemployed and are emigrating. The £155.46 is not set by GP Partners - it is what they are given from higher up. Here is your budget, here are the rules, regulations and policies - get on with it.
I was very conscious of hijacking your post. Hence popping your name onto my reply. There is absolutely nothing wrong with being shy. I am introverted but when in work mode people are oblivious and do not believe me. I decline invitations out but it is rather rude to tell colleagues that they actually bore me stupid. 🤣
The producer was a tad complacent and obviously, needs funding. I doubt very much I would star in a documentary too.
Fret not - people are busy in the real world. Always been a dreadful prankster. Aged 6, got a big telling off for putting powder on a home-made fruit cake. Mother shouting, It’s ruined. I put my sad face on, staring at the floor and apologised. Consuming glucose and liquorice produces lots of flatulence. Lesson learnt - put the powder in certain drinks so it dissolves. 🤣
Even though we have a horrid disease/condition, I believe in having a bit of fun.
Mother was also unimpressed that I gave the rabbit a haircut. It was quite difficult to do layers when he wouldn’t keep still. Plus, no chance to even put a styling product on. 🤪🤪
When I was first given B12 injections for B12 deficiency, I was having problems with worsening symptoms, despite being on the usual 6 loading injections then a maintenance injection every 3 months.
A locum GP saw me - and sent me for a blood test straight after having an injection. She told me that it would make no difference and stupidly, I believed her. My B12 serum test result was over 2000 ng/L (above the maximum measurable amount) and so I got no help at that stage. This also went on my medical record.
Two months later, it was tested again (so last injection had been 2 months ago) and was 860 ng/L. The "normal" range was 197 - 771 ng/L, so again, this would most likely have given the impression that the 3-month regime was working.
But symptoms are what counts and I was really struggling by then. Noticeably.
So two months after this, my usual GP tested my MMA and because it was raised, was able to confirm her suspicions and diagnose functional B12 deficiency, a condition that prevents sufficient B12 reaching cells and tissues. Other causes for raised MMA were eliminated and the testing laboratory confirmed the diagnosis.
It took three years of frequent B12 injections to bring my MMA level down to within range on the sixth test.
I think testing B12 after injections have started gives a skewed picture of what is really happening inside you, and that there should be more focus placed on symptoms. Luckily, I had a good GP who recognised that I was in trouble, but I could have had to deteriorate for a very long time if treatment review had been based solely on B12 blood test results.
We are all different and we respond differently to treatment. It is likely then that some of us retain B12 longer than others.
You do not say what your B12 level was initially, nor how frequent your private injections were. It could be worth getting your MMA tested, but it is difficult from primary care and probably expensive privately. MMA can also be high or raised if you have renal problems or SIBO (small intestine bacterial overgrowth). It may be worth having an intrinsic factor antibody (IFab) test to see if you have pernicious anaemia (PA)- but be aware that, even though a positive result is 95% accurate, only 40-60% of those with PA get a positive result.
Martyn Hooper, the founder of the Pernicious Anaemia Society (PAS), had to have three IFab tests -before getting a correct diagnosis from his third result.
Yes, H.pylori or any gut infection, virus, parasite steals B12 and other vitamins and minerals. It does not want you to have them, it wants them for themselves. Greedy little devils.
So, antibiotics kill H.pylori off but also kills the good bacteria off too. Good bacteria are required for vitamin and mineral metabolism. Have a look at the Gut Microbiome.
Functional Practitioners/Nutritionist include Chris Kresser (U.S.A) and Elliot Overton.
Your symptoms are dizziness/vision/balance problems which are neurological. Please take a snapshot of this with you to show your GP. The Gut-Brain Axis consists of the :-
Enteric Nervous System (the gut’s nervous system, pushes food along by contractions).
Vagus Nerve (a lengthy nerve that goes from our brain, through lots of organs and gut)
Gut Microbiome.
It’s all connected. If your GP moans that you got your information from the internet. Tell them they can fast bleep me but I’ll be far too busy doing Emergency work. 😉
Amazing 🤩 thank you so much for taking time to send this information. I’m going to sit down and properly look all though this so I am ready to give that information x
I would not expect 173 ng/L to be in any "normal" range - but could be wrong since this is a regional thing and differes depending on testing laboratory range. ordinarily, I'd say that anything lower than 200 ng/L would warrant further investigation.
Should be symptom-led: so unless symptoms apparent and visible during the 10 minutes (8 mins ?) of a GP appointment, or you have brought in photos, the GP might need to take your word. Why not ?
Helicobacter pylori is common - but its existence does not cause problems for everyone. Antibiotics not only kill off bad and good bacteria, but quite a few also deplete B12.
Nightmare !
I'd check by Googling which medications can have an adverse effect on B12 - after becoming B12 deficient, I found that antibiotics given caused me severe vertigo and constant headache - like a really bad "can't get your head off the pillow" hangover. Metronidazole and Doxycycline were problematic for me. B12 deficiency can mean that you are more susceptible to infections and less able to fight them off without help. So quite important to get that right.
Hi Chryclaire, I had my other bloods back. My vitamin d and folate was borderline low. Weirdly since taking magnesium, vitamin d and primrose again (I stopped a few months ago) The symptoms are not as bad. My vision is better and I only feel achy and tired. Pins needles are not as extreme as they were, but still comes and goes.
Doctor is calling me on Monday to discuss my results. She was not too fussed about my b12 being so high just said It might be because of my injections, and then asked me if I felt better having them (I did). She said it takes a good few months after injections to have levels come back down.
I am waiting on b12 active results. She said the Serum is not reliable.
She sounds like she's quite clued up about B12. Ferritin, folate, vitamin D and thyroid are the usual additional problems to face, so should be monitored. Not B12 - as your GP says, once on injections, they will ensure B12 levels are high and remain so. Or "no point" as my GP said, after ensuring I had EOD injections ! Wise words.
So my doctor has had a turn around, I have been told nothing more she can help me with because my bloods have come back normal. I had another blood result called Intrinsic Factor antibody- no idea what this one was?. It came back normal.
I just asked her If I was allowed to still pay private for b12 injections and she said it would be a complete waste of money, has to be only injections every 3 months only and then asked why would I want to when my level is so high. I felt so much better having them injections- I think when I first started I was very low on b12 but only just in the range.
I still feel weak and pins/ needles with symptoms too. Just not as bad as I was after taking magnesium and vitamin d (was borderline low on vitamin d).
Any advice welcome, mainly your thoughts on if I can have these injections again.
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