About 6 years ago my GP tried at therapeutic trial of B12 ( My level was 240 at the time and he listened to me saying my symptoms were b12 related). My symptoms all improved dramatically and i've been having 8 weekly injections ever since.
On the whole this works well for me, I start to crash around week 8,, so the jab keeps me going.
Back in March last year _ I felt quite unwell, I think it is hormone / peri-menopause related. I tried HRT but it made me vomit. So I've been getting by but by the time I get to 8 weeks my early symptoms are returning.
So GP tested my blood in March (it was 2000 for B12).. he has decided 'high b12 is what is making me sick .. the sickness is linked to my cycles so I suspect this is not true). He has just retested my blood (10 weeks after a jab) and it is at 1350 .
I think he will now refuse jabs - as I have enough. Can anyone enlighten me - will my level dip lower - how ill will I fell (I really can't face going back to the beginning of this)
Written by
Tigsly
To view profiles and participate in discussions please or .
If you stop injecting your levels should drop lower. How ill will you get? Not sure that is anyones guess it's possible you do just fine with injections every 12 or 16 weeks. What were your symptoms and how long did it take the injections to resolve everything?
It took about 2 years to 'feel right' after the first time.. I was in quite a bad way - think slurred speech, I've had some symptoms for ever - e.g. cracked corners of the mouth.. I had every other day injections for a couple of months - then went weekly - then slowly monthly- and finally got myself to 2 months.
I'm now heading into week 11 - my tinnitus is back - I have beefy tongue (fat, achy), I've got pins and needles again, brain fog, I'm super tired.. my speech is slow and at points I stutter.
I guess I'm asking is a blood level of 1300's 'normal' if you are on jabs? Last time it was over 2000!
My blood serum levels need to be off the scale at over 2,000. For me to keep well . I think you need injections more regularly than 8 weeks . Because of ignorance about B12d you might find it difficult to get that . If you wish you can get all the information necessary to self inject . It’s what we all have to do on this forum. Are you supplementing with B9 ( folic Acid) It’s important as it works with B12.
Yes I take folic acid too... My go was shocked it was at 2000... Even though I felt well...I have an appointment on Thursday . And I'll admit I'm scared
If you were starting to crash before your next injection, it means you probably should have been taking B12 more often. High B12 does not make people sick. They use massive doses to help people who have been poisoned with no ill effects. I started with B12 supplements and they worked for me for many years. Now I need weekly injections. It would not be a surprise to me to see someone heading into menopause now needing MORE (not less) B12. Some people end up self-injecting because it is easier than dealing with the medical system. If you can't get injections often enough, it may be the way to go for you. Personally, I think I would try weekly injections. When you stabilize, see how much you can taper off. I would not go back to 8-weekly. You were getting symptoms back so that is not often enough. Best wishes!
I'm not sure, but I am seeing my GP today as my levels were 6000 at the last test so they seem to think I was 'cured' or massively over-dosing at 1mg every week. NICE guidance is to ignore serum B12 and follow symptoms or to test for methymalonic acid (MMA) or Homocystine. I will let you know how I get on.
Oh dear. Another GP who doesn't understand B12D/PA. If you can't absorb B12 your numbers have to be off the scale for you to have enough B12 to reverse your symptoms.
Dear oh dear. Your GP seems to have switched from 'sensible' to 'ignorant' in one fell swoop. Your levels will fall steadily, but to what level, and what effect?
Treat the patient, not the numbers!
There will be no end of advice on here about self-injection, where to get the stuff, how to do it, and so on. You might want to consider that as an approach.
If you haven't had b12 deficiency then 1300 is more than enough b12. Unfortunately if you have had b12 deficiency then 1300 may not be sufficient - you may need 2000+. Your experience suggests this may be the case for you too.
The reasons for this are not well understood but may include cellular transport of b12, b12 levels in the CNS and the need for super optimal b12 levels to force failing metabolism.
Worse the existence of differing b12 requirements between b12 deficient and non b12 deficient individuals is unknown to most doctors. And things they don't know about they tend to believe they are untrue - because they know everything.
The following video is made by that rarity, a doctor with profound knowledge of b12 deficiency and it's management.
Yes it needs someone in the medical community to publicly acknowledge the misunderstanding about b12, the gaslighting of thousands of patients and needless suffering of people not diagnosed. The irony is that for all the rationing of treatments on cost grounds b12 costs mere pennies.
I would write down all the symptoms you had to start with that have disappeared with treatment, and highlight those that come back while awaiting the next jab. It will ensure that you don't forget anything once in the appointment.Explain that treatment is for life, assuming that your problem isn't diet related.
Hopefully your GP doesn't stop the injections, but you're unlikely to get more often than 8 weekly I'd have thought no matter how ill you become.
I only get 3 monthly jabs on the NHS, but I si eod or daily in between.
Did your gp agree to every other day at the beginning? It seems odd to go from there to obsessing about results and disregarding your symptoms now.
Some people reach levels of 5000+ just on monthly injections, but it varies greatly and so does the rate of decline after. There was a study to show what people’s results were at various monthly intervals and about 18 months after stopping and in some cases they were still high. The aim was to show just much people vary in their absorption and clearance rates. I’ll post it if I find it.
Meanwhile I wouldn’t accept my gp stopping all injections and would source my own. As I do since I was refused even a trial in circumstances like yours.
For your appointment arm yourself with information such as hydroxocobalamin being the detoxification treatment for smoke inhalation by members of the fire services. Injections of massive amounts are given with no ill effects. It is a life saving treatment. Maybe ask your gp for an example where injections/ high levels have caused ill health. They seem to take on board the fact that high levels without supplementation can possibly indicate blood or liver disease and then decide it is a cause of ill health, not a symptom. Good luck.
My B12 total serum level has probably been over the measurable upper limit ( over 2000ng/L) since 2016. I say probably because it is rarely measured now.
As Nackapan and wedgewood have said, this measurement does not show what is happening to your B12 where it counts, so retesting after injections have started is pointless, and not advised in medical guidelines.
If you are still getting symptoms, and all other causes have been ruled out (whether neurological, haematological, SIBO, Coeliac etc), then perhaps you could demonstrate what happens and when best by doing a daily log or chart: list your symptoms and indicate when they return, perhaps how severe they are and certainly when you have had an injection. This should help provide a timeline, a pattern showing the point at which your injected B12 becomes less effective.
There is no point in starting a continual prevention /deterioration cycle if you are able to improve on that situation by pre-empting the return of your symptoms with more frequent injections. This would be the more logical approach for a GP, if elimination tests have found nothing else.
For some, this is all about optimum symptom control/management, not cure. B12 has no recorded toxicity level, so your GP has no medical research to back up his opinion.
Cracked corners of the mouth, known as "angular cheilitis", was one of my first symptoms. I did not know the cause when it first occurred, and did not think to mention it to my GP - until, some 15 years later, I was found to have B12 deficiency, and the loading injections made it disappear temporarily.
Much later still, I was referred to an Oral Medicine consultant for my burning tongue and angular cheilitis - the burning tongue I'm stuck with but the angular cheilitis can be controlled by nipple cream ! 100% lanolin - as long as you are not allergic - applied from a tube one application twice a day, after cleaning your teeth, ensuring not to reinfect area. It really worked for me - but does return within a few days if I stop using it. I think I posted a photo of this condition here previously, but you could Google it.
What was he expecting? Of course your blood B12 levels are good, they were injecting you with B12! That sadly has no bearing on your health at all as like people have said, blood B12 levels are now meaningless. If you haven’t already, strongly consider injecting at home which is safe and cost effective when you follow the guidelines that most of us do, and you will not have to worry about useless GPs and doctors. Having your health in your hands is so important. Not everyone can afford private consultations with real B12 experts but those who do are shown how to self inject once and off we go with the knowledge we need, it’s that simple
You sound like you are interested in educating your doctor. Some doctors are open to information from medical journals. If you are interested in some pertinent medical journal articles, here are some suggestions:
Ralph Green is a hematologist at the University of California, Davis. He has been a co-author of several articles on B12 with Bruce Wolffenbuttel. He wrote an article with himself as the only author in 2017: "Vitamin B12 deficiency from the perspective of a practicing hematologist."
I think Dr. Green has probably backed off on some assertions in this article, perhaps in concert with his work with Bruce Wolffenbuttel. But I think he probably still fully endorses his final statement prior to the Conclusion:
"It should be noted that patients with pernicious anemia at times report that the recommended treatment schedule is not adequate to relieve all their neurological symptoms and therefore often request, or may even treat themselves with, B12 injections more frequently than the guidelines suggest. No biological basis for this apparent increased requirement for B12 replacement is known, but because there are no reports of adverse effects associated with excess B12 intake, there is no reason to advise against this practice."
I wouldn't spend time on the rest of the article.
You can also find medical journal articles authored by Dr. Bruce Wolffenbuttel. One is quite good at summarizing information on clinical treatment of B12. (A co-author is Ralph Green.)
Click on the tab that says "pdf" and it should allow you to download a pdf copy of the article.
Look at any parts talking about treatment, especially the suggested frequency if B12 injections for people with neurological symptoms. Also, mark any comments about the irrelevance of serum B12 test results in a person who is injecting B12
Finally, another article by Bruce Wolffenbuttel and others, again including Ralph Green:
"A Brief Overview of the Diagnosis and Treatment of Cobalamin (B12) Deficiency".
Scroll down a bit until you see a tab with this text: "[PDF] guildhe.ac.uk", and click on the tab.
PDF files are good in that they are copies of the articles as they appeared in the printed journals. They include tables, etc, in a format that is easy to read. Also, if you can print them, you can bring the printouts to the doctor. Try to highlight or otherwise mark the parts that you particularly want the doctor to know.
Don't worry about things you see in these articles that you don't understand. Focus on things that seem helpful to you.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
B12 Deficiency, recently diagnosed, seeking advice. 
Too high b12 level!?
Below range b12 - advice needed
Suspected B12 advice
