I'm reaching out for some guidance and advice. I've recently experienced tingling and muscle aches and neck and leg tingling , and I'm concerned it might be due to having too much B12 in my system. I had a blood test three weeks after my last B12 injection, and the results showed levels above 2000. I've two self-injections and have been feeling these symptoms since.I'm worried that I might have too much B12 in my system. Has anyone else experienced similar symptoms from B12 injections? Could these symptoms be a sign that I need to adjust my injection frequency, either by going back to every other day EOD or trying to drink water to flush out of system completely?
I'm a bit scared to adjust my frequency without more information, as I'm unsure if it would make the situation better or worse. If anyone has had a similar experience or can offer any advice, I would really appreciate it.
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Damacian
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There is so much misinformation, disinformation and mal-information out there. Medics DO NOT KNOW ABOUT THIS DISEASE. They were given a brief overview and are too swamped to learn.
So, please educate yourself. Ms T Witty has listed misdiagnoses :-
She has her own website on B12D. Plus, buy or download Dr Joseph Chandy and Hugo Minney (PhD)’s book Vitamin B12 Deficiency in Practice. The late Dr Joseph Chandy nearly got struck off by the General Medical Council for treating PA/B12D as they should be.
GPs do not know about it because they have so many other diseases to learn. Plus the politics, policies and bureaucracy.
Once treatment has commenced retesting B12 levels is severely skewed. There is NO POINT. This comes from the British Society of Haematology. The number means NOTHING.
When they try to undertake ANY investigation you have to CONSENT to it. Damacian, you gave implied consent by exposing your arm. Had you known early, you wouldn’t have let them. All this panic and worry for nothing.
Your tingling and muscle aches and neck and leg tingling is your Nervous System waking up, nerves healing. Dr Chandy referred to it as the Reversing Out Process.
When nerves heal, they can itch, burn, tingle, muscles ache. Remember as a kid climbing trees, falling over, getting cuts and bruises ? Scrapped knees ? External skin wound healing is different than internal healing. It is the same principle though. There gets to a stage on a scab where it really, really itches and you really want to scratch the scab off. If you do it may bleed again.
So, you carry on with your EOD injections, you get over the temptation to STOP the necessary HEALING. Please SHARE the information I have provided and educate others too.
Next time, ask doctor, nurse, phlebotomist what they are going to do to YOUR body. It’s yours, please look after it.
Thanks. Words are very encouraging. I will join but my question still remains, surely there must be a point at which the EOD has to stop and the reversing out must run its course ? My situation was that I was EOD for 30 days and then stopped and then 3 weeks later self injected to top up ( when I really didn’t need to, just wanted to top up and test the process) and the aches and tingling started again. From what your saying it was a mistake to self inject again as the effects I am feeling are just a reaction to the self injections and not lowness of b12?
Do you know what your iron and folate levels are as these work together with the B12 to make healthy red blood cells and the three need to be in balance. Get these checked by your GP
I am not a medically trained person but have had P,A for over 52 years.
I was wonndering if you or anyone else that has been on B12 injections for a long time still have to keep up with the potassium drinks. I inject EOD inj. for 2.5 months now and take my cofactors multi's and I find I still need potassium everyday in my electrolyte drink though out the day.
I don't think I was ever told as I lived in ignorance for the first 40 odd years but I do eat a lot of bananas for daily breakfasts which are a good source of potassium.
We are all different with different causes for the deficiency and with different metabolisms
I hope someone else will b e able to help more than I.
you are correct we all have different needs in this deficiency I was just curious if you came across that need, I read it on here that potassium gets used up easily with high doses of b12 maybe in the beginning of treatment I'm not sure yet if it is an ongoing thing our bodies do will be doing. I'm almost 3 months in EOD injections and still need it at times of the day. but thank you for you experience.
So, something I have found really helpful is to keep a symptom diary where I track my main symptoms each day, rate them out of 10 for severity/impact and also track meds/injections. It helps me (and my dr) see patterns etc.
I would say the break you took from your EOD has not been helpful - your system had probably just started replacing and fixing things with that steady income of B12 and then it has stopped, so of course your body prioritises life functions athe expense of other things (nerves etc). You have put yourself back on a diet when your body was healing from an anorexic supply of B12.
what does that mean? surely had to come off of EOD sometime, can't be EOD forever. My GP was reluctant to even put me on a 30 day EOD and only did so because my Neurologist suggested.
I guess the hope is to eventually get to a point where you’re injecting enough to not have deficiency symptoms.
I couldn’t even get to a week without mine roaring back with a vengeance.
At this point, medicine/science doesn’t really have a way of fixing the absorption problem at the source (happy to be corrected) so B12 replacement is needed. And everyone is different so for some, EOD is a necessity. And others not so much.
I have been on EOD injections since mid-April and now I've reduced to every 3 days and in two months I will move to once per week, on the advice of the B12 specialist in Cambridge and the fact that my recent blood tests for ferritin, vit D and folate were back into the 'normal' range. The GP was trying to add B12 testing on there but I told them I didn't consent because it's pointless, as Narwhal explains.
I caught my deficiency quite early so my healing process is likely to be quicker than others' who have been deficient a long time. Everyone is different as it depends on the damage done, how long you were deficient, other health conditions, the cause of your deficiency etc.
You are asking about EOD injections being forever, but it sounds like you went from EOD to nothing for 3 weeks? Or have I misunderstood you? Your personal medical situation will determine the self injection schedule you need (if your GP doesn't support the frequency you need) but going from EOD to nothing is going to stop the healing and it sounds like when you did the two injections recently, you had 'waking up' nerves or 'reversing out' symptoms again. I had these when I started EOD injections but the majority of my symptoms have either gone away or hugely improved after three months of consistent EOD injections (and supplements for iron/vit D/folate).
I had a friend ( beginner 1 ) who always had to inject twice a day to keep going . But she had been badly neglected , and her spine was already affected . . May be depends on how long you have had untreated P.A. We don’t know . And always difficult to know if genetics are involved . In the past P.A. was unknown , and there was no treatment . Treatment with injections is fairly recent .
Scientist, not medic. The 'blood test after injection' is pointless, wasteful, misleading and confusing. It's the equivalent of tipping a load of salt into a pan of water, and then testing to see if there's any salt in the water. Laboratories have quite enough to do, and have budgets. These tests don't come for nothing.
Some people can experience a drop in potassium levels when they start B12 treatment.
Maybe your GP could check your potassium levels.
I would never take potassium supplements unless prescribed by a doctor as excess potassium can lead to problems. Some forum members try to include potassium rich foods in their diet.
I was found to have B12 deficiency. This was treated in the usual way (UK NHS) - with 6 loading injections then a maintenance injection every 3 months. My GP, aware that I seemed to be continuing to deteriorate, gave me 3 months supplements for low ferritin and folate. She also had my MMA tested. Despite the B12, my MMA was raised.
This gave me a diagnosis of functional B12 deficiency, where MMA does not make the link with B12 and transport it to cells and tissues. On advice from consultants, she requested EOD injections from the practice nurses. I was given 2 a week.
This started to work. So she continued this treatment regime, and three months later, I finally felt an injection ! I no longer had to ask if the nurse had finished ! Small win - but such a relief. An indicator that I was on the right track. A delighted GP continued this frequency for a further 3 months. When this was reduced to 1 a month, I started EOD self injections -and told my GP the day after I did my first.
She monitored folate, ferritin, vitamin D and thyroid etc - but not my B12. "Pointless".
Meanwhile, she sent me to various consultants to ensure that there was nothing she had missed. Coeliac disease for example. She hadn't.
Having ruled out renal problems, she also ensured that there was no other cause for raised MMA. SIBO for example. There wasn't.
Nothing else /other was ever found. After the frequent injections started, my MMA finally dropped into range after three years.
I now inject myself twice a week. This, by and large, controls my symptoms. My serum B12 has probably always been over 2000 ng/L since 2016.
So that's just my story. DNA specialists have told me that, if there is a genetic cause found for a malfunction, the usual advice given is to administer 2 injections a week for life. They could not find one in my case, but this frequency seems to work for me.
Your story will not be the same. None of us here are. If you are worried about the symptoms you are experiencing since self injecting, and believe that they are related to the B12 and not reversing out effects (nerve damage reparation), then perhaps you can feel reassured by the fact that B12, having no level at which it is considered to cause problems, is itself used in large amounts to flush out toxins in patients.
Plus I'm still here !
This can only be your judgement call though. The list of B12 deficiency symptoms might help you discern whether these problems are in fact related to your deficiency and not overtreatment. Tracey Witty has a useful list and so does the Pernicious Anaemia Society website.
NICE guidelines recommend to GPs that for those patients presenting with B12 deficiency and neurological symptoms, treatment should start with EOD injections, until no more improvements can be gained by doing so. This is due I'd expect to the possibility that severe nerve damage plus late detection and B12 treatment can mean that the damage is irreversible.
Thereafter, a maintenance dose of one injection every two months is advised. The entire point being to maintain the gains made by the EOD injections. If no gains/ insufficient gains, what would be the point in stopping EOD injections, beyond giving up ? I would say that, if you are able, the point is to pre-empt the return of symptoms by ensuring the maintenance injections are frequent enough to do this. Yes, as PlatypusProfit8077 has advised, a diary or symptoms chart will help you to see any pattern emerging (and perhaps your GP or consultants). It can take time to stabilise.
There is a "state of self" that we all want to return to. There is no catch-all formula for that.
Advice, yes, and learned colleagues, and useful links to research papers. Plenty of hope, support and kindness from people who have experienced this. These are the best bits of who this forum is collectively.
NICE guidance says B12 blood tests should not be performed after injections or supplementation - the results are invalid and meaningless. The start of B12 treatment can be crazy, variable and yes sometimes miserable. We’ve all been there and understand x imagine the mechanisms behind what your body is doing. Finally, after likely many years it’s getting a reliable, usable source of B12. It’s going to start trying to repair your nerves, which will be most noticeable in your peripheral nerves as they are furthest from your spinal cord. Some of the symptoms I had of this healing were pins and needles, tingling, and strange severe and fleeting pains in my second knuckle bones. These symptoms will start to settle down in a few months, as long as you power through it and stay consistent. Any of us here will tell you how much that’s worth it. You’ve received reassuring advice on this thread about the water soluble nature of B12 and how it is safe even in these very large doses. Keep going and reach out if you have any other questions too
My B12 is above 1500, the labs upper volume doesn’t log above 1500. Mine is likely to be similar to yours and I’ve SI’d since last October. The following may help you grasp the Reversing Out phenomenon:
Understanding the “Reversing Out” Phenomenon: Feeling Worse Before Getting Better
The process of reversing a Vitamin B12 deficiency can be perplexing and distressing for some patients. It’s not uncommon for individuals to feel as though their symptoms are worsening when they begin treatment, leading to the impression that they are not on the right path. This experience is often referred to as the “reversing out” phase.
Why “Reversing Out” Might Feel Like You’re Getting Worse
1. Symptom Fluctuation:
• Initial Worsening: As the body begins to receive the necessary levels of Vitamin B12, some symptoms might temporarily intensify before improving. This is due to the body’s adjustment and repair processes, which can exacerbate symptoms like anxiety, fatigue, and even neurological issues initially.
• Adaptation Period: The nervous system is particularly sensitive to changes in vitamin levels, and as it adapts to the correction of a deficiency, symptoms can fluctuate.
2. Detoxification and Cellular Repair:
• Detoxification: As Vitamin B12 levels normalize, the body starts to repair and detoxify. During this process, the elimination of accumulated toxins can cause temporary side effects such as headaches, fatigue, and increased anxiety, making it seem like the treatment is ineffective.
• Cellular Repair: The repair of nerve cells and regeneration of tissues require time and energy, which might temporarily exhaust the body, causing a perceived worsening of symptoms.
3. Neurological Adjustments:
• Nervous System Rebalancing: The nervous system’s function might initially be disrupted as it starts to repair itself with adequate B12. This can cause an increase in neurological symptoms such as tingling, numbness, or anxiety.
• Neurotransmitter Synthesis: Vitamin B12 is crucial for neurotransmitter production, including serotonin and dopamine, which affect mood. Changes in their synthesis can lead to mood swings or anxiety during treatment.
4. Psychological Factors:
• Expectations vs. Reality: Patients may have high expectations for immediate improvement and feel discouraged when symptoms seem to worsen. This psychological component can contribute to a sense of doubt about the treatment’s effectiveness.
• Fear and Anxiety: The stress of dealing with a chronic condition and the uncertainty about treatment can amplify feelings of anxiety and discomfort, which can mislead patients into thinking they are on the wrong treatment path.
Dr. Chandy’s Insights on “Reversing Out”
Dr. Joseph Chandy has emphasized the importance of understanding the “reversing out” process in B12 deficiency treatment. He advocates for patient education, so individuals are prepared for potential symptom fluctuations and can remain committed to their treatment plan. Here are some insights:
1. Understanding the Timeline:
Dr. Chandy points out that recovery from a B12 deficiency can be a gradual process. Patients should be informed about the possible initial worsening of symptoms, which is often a sign that the body is beginning to heal.
2. Patient Support:
Offering psychological support and reassurance to patients is crucial. Dr. Chandy suggests that healthcare providers should provide clear communication about what patients might experience during treatment, reducing anxiety about symptom fluctuations.
3. Long-term Perspective:
Focusing on long-term health benefits and gradual improvements can help patients stay motivated during the challenging initial phases of treatment.
How to Manage the “Reversing Out” Phase
1. Stay Informed:
• Educational Resources: Patients should seek information from reliable sources about the symptoms of B12 deficiency and what to expect during treatment. This knowledge can empower patients and help them…,as recommended on here, Dr Chandy’s book
You may want to consider your symptoms may be caused by other things. After a year on b12 my full body nerve pain was mostly gone but I was still having muscle pain and intense tingling. The nerve tingling was all on my left side. Head, face, neck, arm, hip, leg, foot. Took me a long time to figure it out but in the end it was muscle knots (trigger points) putting pressure on the nerves causing the tingling. Doctors and physical therapists were useless. I got some relief from massage therapy. I researched the hell out of it on youtube and ended up finding trigger releases that consistently work. You can easily find out if this is causing your issue. Here are some videos that will guide u for the neck issues:youtu.be/o3r4yT7uFqs?si=7_z...
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