Can high serum and active B12 levels (above recommended levels) cause the nerve damage? I recently had to visit my GP clinic and couldn’t get my favourite doctor so, agreed to seeing another doctor. Upon looking at my file he was shocked to see my apparently ‘very high B12’ results. In his opinion, too much B12 could be detrimental to me and suggested that ‘I should reduce’ the amount I inject and three monthly injections should be sufficient for the majority of people. He also suggested that this high levels could be contributing to my slow recovery from my neuropathy. Why is this such a concern for doctors….at the start of my PA journey, not one doctor flagged my extremely low B12 but, now flag my extremely high B12 and tell me this is a problem?? It took me over a pain staking year to finally correct my B12 deficiency on my own and this dude thinks he can tell me it’s a problem, seriously?? I have never encountered such inconsistencies before in medical practice, everyone has a different opinion on this matter. In the end, for their incompetency and negligence, we suffer the consequences.
Too much B12??: Can high serum and... - Pernicious Anaemi...
Too much B12??
I couldn't agree with you more I have encountered the same issues. It's infuriating to the point we have little choice other than to self medicate. It seems they only see what they want to see and governed by numbers rather than our awful symptoms. I'm afraid the medical profession has a long way to go before getting it right.
Well I never fancy your levels being high ! Now there's a surprise seeing as your on injections. Maybe thats why they say 'do not retest'. 🤔 High levels could aggravate the nerve's apparently but wouldn't cause the issues.....google it.
Has this Gp thought of screening you for atrofic gastritis ? Is he aware you have crohn's ? Would that not explain your deficieny and ring alarm bells ?
It's taken years for mine to do so despite my having errosive gastritis ! Surely it makes sense to look for the root cause of the deficiency. This sort attitude makes me so dambed cross. I would have thought you need medicating for life, that's what my gastrologist told me. Mind you he could change his mind by the next time I see him, as you say nothing is consistent.
Looks like your going to have to educate this dumb dude. Xx 🤬
I've googled it like you said, and a few sites say all sorts of bad things happen to us from taking high b12 - this one pretty much says we're about to die if stroke, heart attacks, kidney failure etc..driphydration.com/blog/too-...
I let things worry me... I shouldn't worry about carrying in injecting, should i?
I read those things too but not heard of anyone on the site have the issues mentioned. Sometimes the symptoms get worse before better but I inject twice sometimes three times a day.
Take a look at the top of the page at how many people are on this site. If I remember correctly it was over 3 thousand.
Surely they cant all be wrong. 😘
I've had similar scare mongering .Just choose not to see that Gp again .
They are simply not educated in b12 def.
He/ she will have no evidence.
Next.....stichtingb12tekort.nl/engli...
>>scare mongering.
Good analysis. A ploy often used in place of reason.
hello, I am so glad you are not going to follow the advice of this fidgering idgibit (aka flipping idiot), it's harmful and dangerous.
My gp said much the same and prescribed 3 monthly injections. I figuratively walked away. I self inject currently three times per day and better for it. We are all different., do what your symptoms and body/experience tells you is right.
B12 deficiency causes neuropathy.
Best wishes.
They don't expect you to be better educated than them about your condition.
Ask him for the evidence that supports what he says and show him this: bmj.com/content/bmj/383/bmj...
Thank you for all your valid feedback. I politely asked this GP to stick to the reason that I am here and not comment on my conditions. It seems that whichever doctor I may see and they have to pull up my file I will always encounter scrutiny and comments and their so called expert opinions will always come. They also don’t like being confronted by patients being knowledgeable about their conditions and contradicting their so called medical advice. I left the clinic angry and frustrated that my purpose for visiting the clinic was brushed aside and the focus was on my ‘extremely high’ B12 and he was surprised that I was self injecting, I got the vibe that he was thinking I’m a drug user. Most likely, for the rest of my life, I will be encountering this type of medical ignorance and just have to prepare myself for a quick response every time. I will persevere, without this forum and everyone’s kindness and all the links to the various research papers that I save who are living in similar circumstances to me, I think I most likely would have had a mental breakdown by now and be suffering a more dire fate. I sincerely appreciate you all for sharing your knowledge and experiences here, I’m eternally grateful.🤗🙏🩷
What will happen if we have to go into a care home?
I read a post on here that someone had a relative in a care home and they didn't bother with the injections she had always had and she started deteriorating. It's a worry.
charks,
I am extremely grateful that you have brought this up and in due course, I will put together a post entitled Advanced Planning. This is a Care Plan which has to be adhered to throughout the course of a person’s lifetime. It is particularly important with those born with congenital abnormalities and Learning Disabilities where you protect the person and they are treated humanly and with dignity. They may have specific communication needs as well as physical and emotional needs.
Thank you very much.
🐳
I look forward to reading your post and sincerely appreciate your response..😊
Thanks for that! I did not know that had a name.
Sorry WIZARD6787,
lackadaisical in my reply. I was off galavanting because like GoneWithTheWind1972, my B12 was high. 🤪
So, yes :-
1) Plan of Care.
2) Care Plan.
3) Treatment Plan.
4) Plan.
5) Care & Treatment Plan.
Variations dependent on area of Medicine. Emergency, obstetrics, geriatrics/paediatrics/neonates, General Medicine, Learning Disabilities/Psychiatry.
We use lots of charts and tickboxes for checking Equipment and Monitoring a person’s health. GoneWithTheWind1972 has commented on their neuropathy. We use the acronym SOCRATES for PAIN.
S - Site. (Where).
O - Onset. (Time and Duration).
C - Character. (Burning, stabbing, cramping etc).
R - Radiates. (Pain down left arm)
A - Associated Symptoms. (Dizziness, vomiting, hearing loss).
T - Time/Duration. (Thunder clap headache lasts 60 seconds). 🚑
E - Exacerbating (What makes it worse or better).
Score - (1 to 10 - 10 being excruciating).
If a patient complains of Total Body Pain then I strongly feel that testing for P.A./AMAG/B12D. Information on a Thunder clap headache :-
health.harvard.edu/blog/thu...
I have referenced Harvard for a reason. 🤓
My elderly mother who also had pernicious anemia had to go into a care home. We chose a particularly good, expensive one. They agreed to give her B12 but never actually did. I could not find any way to make them. She quickly became weak and died a year after admittance.
Kailaylia,
I am so very sorry to read about your mother. Such a tragic loss for you and your family. They failed your mother and you on Duty of Care.
Sending my deepest sympathies.
😘
I had to fight to have my Mum’s B12 jabs when she was in a nursing home. If I hadn’t made a fuss, I’m not sure she’d have received them in a timely fashion. My poor Mum had dementia and I fought for everything she needed. I did worry and still do about those without someone to advocate for them. For the pleasure of additional worry we paid £1200 per week 😫
So disturbing to hear this about your mother. Care facilities should ‘care’ for their patients as the name suggests. I agree with you that many don’t have advocates in their corner and slip through the system with dire consequences.
I am so sorry to read Twaddletop, it must have been very difficult for you. Sending a gentle hug.
I strongly believe that we start using the correct terminology. So, the medication prescribed is usually 1mg/1ml of hydroxycobalamin intramuscular.
Alternatives are :-
1) 1mg/2ml of hydroxycobalamin intramuscular injection. Every 2 weeks or whatever.
2) 1mg/1ml of methylcobalamin intramuscular injection. Every Other Day or whatever.
3) There is Deoxyadenosylcobalamin as well. I take oral 250 microgram every day.
Some people prefer sub-cutaneous and in Emergency Medicine such as Cyanide Poisoning, doctors administer it intravenously.
Drugs/Medications are :-
Dose, name of medication and route into the body, frequency.
It is a life-saving drug/medication and without it people can become permanently disabled.
😘
So sad to hear this, my deepest sympathies for your loss. This makes me so angry to hear this, was it so difficult for the facility caring for your mother to honour your wishes? When will these failures end?
I talked to two Drs about my low B12 active/serum and folate and all they were concerned about was my thyroid TSH and both suggested I lower my dose 🙈🙈🙈…. Grr 😠
Pretty pathetic if I may say so, we just have to persevere until we are heard.
We are definitely going to be in a bit of trouble.🙏🙏🙏
Hi GoneWithTheWind1972,
I am sorry to learn, it is yet, another doctor who is poorly educated.
First and foremost, why have you got a very high blood result ?
1) Because they erroneously re-tested your blood when treatment has started.
2) Then they have erroneously stored it on the computer.
3) Now you have a doctor erroneously commenting on it.
There is no logic being applied here. You know your body better than anybody. Neuropathy can be due to PA/B12D and other deficiencies.
The conversation with the GP, you have a choice - block, ignore or delete. Some people will never listen.
🐳
My doctor had someone filling in who suggested testing my B12. I said it is pointless because I am having regular injections. So it was not tested, and that avoids problems with it being too high. I had it tested once when it was pointless and it was too high but it was just a meaningless result. Some of us cannot manage with only getting injections every 3 months. I seem to need them about once every 2 weeks to stay symptom free. So sorry you are having so many troubles and hopefully they also dealt with your other problem.
I wanted my folate level checked .B12 is done at the same time.
Logical at the start when not on b12 Injections .
On that occasion high levels of B12 co.mented on by G.p.
I just replied ...they will be won't they ?
Loathed to have folaye level checked though now.
Lab results should reflect as a guide of what is going on in the body and not be stringent on being ‘within range’ and be monitored by a person’s symptoms. My favourite GP said that my B12 results were excellent. Quite different from the one I had to see yesterday.
As everyone knows here, we all treat according to our symptoms and what works best for us. Doctors should also understand this concept and not dump us all in the same basket. My reason for the initial visit was finally addressed to for a rushed five minutes, very frustrating to say the least. Thank you for asking.😊
Isn’t this just a perfect example of human characteristics? Glass half full/half empty!
100% true!! More like glass half empty mentality.
impossible to have b12 serum levels too high. The dr needs to do some homework
The initial pathology request was for Active B12 and the serum B12 was automatically done too. Now this high serum B12 will be flagged by every doctor who views my file. I will go back to my favourite GP and ask him if this can be removed or have a self explanatory note added to my file.
I just tell the GP to expect high b12 serum as I SI every second day. They accept it . They have no choice. 😊
I hope you dont mind me butting in with a rant of my own. I have come to the conclusion that most GPs have less medical knowledge than the general public. It is not just B12. When I worked in a nursing home I once called eight different GPs out to a man with a broken leg, the last one finally agreed to an xray after eight different diagnoses and an eight week wait for that poor man. I was allergic to the astra zenica covid vaccine. About 10 mins after the jab I had a widespead ichy rash and the injection site was ichy. I spoke to the pharmcist who administered the jab who said we cant give you another, he looked up the guidence which said I could have a different brand as a second jab in a hospital setting and advised me to organise this with my GP. I had six conversations with six different GPs all trying to persaude me to have the astra zenica again. When my mother lost six stone in weight and went a bit yellow her GP said to me 'I can assure you there is nothing physically wrong with your mother'. Every body else knew she was dying. I could go on. They seem to be able to do chest infections but not much else.
It seems to be far too common a practice for medical negligence/malpractice today. I firmly believe we have to stand up and persist and call it out when we see it. What were doctors taught in medical school anyway??
My goodness Hectorsmum2,
1) That poor man with a broken leg. Thank goodness you were persistent.
2) The best thing to do with ANY reaction to a medicine or medical device, I can see you are U.K. based, is the Government’s MHRA Yellow Card Scheme. You can click on copy to GP. So it is flagged on their System. It saves the 6 GPs trying to tell you different. Waste of their time and energy. Everyone was given a card saying the Batch No. You can take the name of the pharmacist who gave the injection and reported it to. So :-
and
pharmacyregulation.org/regi...
Add the person’s name and GPhC registration number to the Yellow Card Scheme report. A doctor cannot argue with a pharmacist and a government form.
3) I am dreadfully sorry to read of your mum. It is must have been very difficult for you and nobody thinking is this jaundice from problems with your mum’s blood, her liver, her gall bladder or her bile duct. Sending a gentle hug.
Thank you Narwell for the support and information re yellow card. Hug back
And no one seems to understand the seriousness of what we are going through. Just returned to Australia, can’t find hydroxocobalamin ampoules anywhere, told they’re out of stock till next March, and, just take a tablet! If only it was that easy.
Is there a shortage nationwide?? My local pharmacy has it in stock. I suggest trying a number of pharmacies and buy as many as you can and stock up as there aren’t limits to how many you can buy. B12 tablets are completely useless, why would anyone think you just substitute this ?? Total ignorance is all I can say. Keep us posted if you don’t have luck sourcing it.
Hi, can I ask where you are? I’m in Canberra.
Yes, I’m in Melbourne.
Same problem here, also in Australia, very worried, doctors and chemists just shrug their shoulders. I was on large quantities of sublingual B12 when I nearly died of pernicious anemia. It does nothing for me. Only other treatment is raw liver, but liver sold these days is disgusting - brown and stinky. Might have to look for edible raw liver to see us through.
Sublingual B12 doesn’t work for us with PA. In the beginning of my PA journey I was on three monthly Hydroxocobalamin B12. Now on Methylcobalamin B12 which I self inject.
I’m so sorry to hear you nearly died from PA. How are you feeling today? Hoping you are managing well.
So glad that liver treatments are a thing of the past with much tolerable ways to treat PA.
Hi GoneWithTheWind
I experience the same with my GP, eye-rolling and comments along the lines that my care plan is “ridiculous”. I have a body-centred approach in that I try to observe and respond to my body. As a result I now inject 4 times a day and I feel so much better.
This is my simple philosophy which I will share with the medics in future. I have replied to another post with the same reply, do forgive me if it’s familiar.
Let’s consider my donkeys as a case in point. When I rescued them they were both emaciated having been starved for several years. I was advised that their recovery period was likely to be as long as their decline. The recovery method was little food and often. The equivalent of half a standard adult donkey meal split into 4 small meals a day. After 3 months and their decline had stabilised the four small meals got slightly larger. Then three meals a day, then two but equating to around double a daily adult meal to speed their recovery. Then ad lib to full recovery. All very sensible - stabilise the decline, then surplus to rebuild and get full recovery. Now, question is would they have recovered and be as healthy as they are now if I had given them 6 large meals and one large meal every 12 weeks?
Why is B12 deficiency any different? Irrespective of how long our decline, the nerve repair takes time. Yet, if we are lucky we get 6 loading doses and then one every three months for the rest of our life. (I know we are supposed to get EOD when neurological symptoms but I wasn’t offered this). So are we seriously supposed to believe that years of decline can be stabilised in two weeks and achieve full recovery with a 12 weekly injection? Recovery on that basis by my reckoning is beyond most people’s lifetime!!
I row my own boat and self inject. I know my body is healing fast and I monitor its reaction to B12 closely. I know that my body is happy and if my body’s happy then I am happy. In my very humble opinion, the NICE guidelines and general treatment of PA by medics does not appear to be based on logic.
Trust your instincts GoneWithThe Wind and continue to row your own boat with gusto. You are not alone.
🤗🤗🤗🤗
I am definitely rowing my own boat and treat myself according to how I am feeling. I love your explanation with your donkeys , makes complete sense. I have the power of knowledge and this wonderful forum.
I hope your donkeys are living a wonderful life now too. Thank you for sharing.
Hi wwwdot, I agree. Can I ask, how much B12 in total you inject each day per injection. 1ml 4x per day = 4ml total? Thank so much.
Hi EllaNore
I inject 4 x 1500 ug per day. I don’t know where I am on my donkey curve but I know I am feeling so much better and full of energy like I used to be. Still not perfect as I know when I need B12. I can be fully absorbed in an activity or enjoying a social occasion and then I start to feel flu like which reminds me to check the time and I am always past the 5 hour mark since last jab. Within an hour of injecting I am back on form. I am also sleeping really really well now when I go to bed.
🤗🤗🤗
That sounds wonderful.
According to Google, 1500 micrograms (mcg) is equal to 1.5 milligrams (mg). 1 mg is equal to 1000 pg/mL, so 1500 mcg is equal to 1500 pg/mL.
I have 1ml ampules of B12 so you're splitting your one ampule per day into four different injections so that you administer it little by little? Sorry I'm slow about this. or are you injecting 4 ampules per day?
I would love to sleep more than 4 hours a night.
EllaNore
NEVER any need for a sorry! I don’t split 1 ml ampules. You are right that I use 4 a day currently. Each ampule is 1500 ug in 1 ml solution. I use Pascoe Hydroxocobalamin . So I am currently taking 6000ug per day.
🤗🤗🤗
Okay thank you so much. May I ask where you're getting your methyl? I can only find it in powder form from Biotech. I'm in the US and it's very difficult for me to find methyl that isn't a big hassle. And that I don't have to find saline solution for as well. I would really love to find methyl in an ampule. Thank you so much for all your help!!
EllaNore
Typo sorry. It’s Hydroxocobalamin I use (I have corrected the reply too) . I haven’t been able to source injectable methylcobalamin or adenosylcobalamin. I take methylcobalamin in droplet form when I can’t inject as I am in a meeting or whatever.
🤗🤗🤗
That's ok. 🤗 Thanks so much for all your info. I also use hydroxy. I might try 2x daily. Several members inject 2 or more X's a day.
Hi EllaNore
It’s curious but when I was on EOD I thought I was doing well but after a while it wasn’t enough as I was starting to do more and I felt a B12 low so I upped to every day, same happened again, so I upped to twice a day, same again, then three times a day, same again now I am on 4 times a day and I feel really good. My skin looks good, my eyes are clear, I am thinking straight and most importantly my anxiety has gone. I am literally taking it a day at a time and working out and thinking each step. I am hopeful that my B12 need will plateau and start to decline - before I have more needle holes than a sieve!
🤗🤗🤗
I have to say I feel the exact same way. I think I'm just going to do more. I just really feel like I've hit a plateau and I'm going nowhere. Right now I'm fighting and intestinal infection and it's really knocked me for a loop for about a month now. And I just cannot take being sick anymore. I just have no life. I'm going to do more injections daily I'm going to see how I feel on four. Thank you very much for all your help. I'm really sorry if I hijacked this thread. It's terrible that our doctors don't have any clue how to help us. I'm in the exact same boat right now and I have no doctors to turn to that know what they're doing. So I will try more B12. I still feel we need a B12 drip or a patch that releases B12 all day long.
Hi EllaNore
We have not hijacked this thread. It’s about the perceived “too much B12”. What we are discussing is that the need for B12 changes and that the best healing appears to be when one is responsive to that change.
We can’t overdose on B12 and it’s relatively cheap compared to being hospitalised or the disease consequences of not having enough so it’s a no brainer really.
I need to check my cofactors like folic acid more often as if I am injecting more B12 and it’s working then unless I supplement folic acid at the same time it should decrease at my next blood test. I got it to quite a good level at my last blood test so I have a baseline.
🤗🤗😁
Great. You know that just makes total sense www dot. It is cheap and I am definitely going to try more. Might as well try it.
Hi EllaNore
I think the main thing is to have a game plan and to keep good records. The body reacts to a lack of B12 in different ways and also to extra B12. It’s important to record what you self treated and your symptoms during the day. That’s how you will identify your pattern. That’s how I noticed achy teeth around 3pm. So I started injecting extra B 12 around 2pm and hey presto no achy teeth! What works changes as I heal and I need to be responsive it’s like observing and actually SEEING, feeling and being AWARE of what your body is experiencing. Since I now inject more frequently I have not used any paracetamol or codeine or ibuprofen as I am aware that the (mild) pain ebbs and flows around injection times.
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My teeth hurt as well My gums my teeth have broken I've lost a lot of teeth and I couldn't figure out why I was having these problems as I take very good care of my teeth. My gums hurt I have sores in my mouth My lip has sores on it. My tongue is painful. My spine from my head to toe is in constant terrible pain. I have very little feeling below my knees. However that kind of comes and goes. My feet are extremely painful my hands are very painful I drop everything. My vision is blurry. My mucus is very thick My lungs don't have the right oxygen mixture to the point of carbon monoxide poisoning in small amounts. My scalp hurts. I get a type of skin lesion very small almost like acne but not. And I have idiopathic udicaria, I could go on. I keep track of things I have a diary.Right now for the entire month of November I have been in bed 90% of the time. My back hurts so bad that I've had a headache this entire month. My stomach has been bothering me quite a bit they think I have a intestinal infection. I'm taking two kinds of antibiotics right now. It's been very difficult to get a handle on this and two figure it all out when you don't have any doctors who will listen to you. They keep running tests and they keep saying things but I'd like to get a final diagnosis on everything. I did get a diagnosis of subacute combined degeneration a few weeks ago. And I really think that my spine is really causing a lot of intestinal problems right now. My legs are very weak walking is very hard. I'm very dizzy. And I just feel very outside the bubble of my life. Like I can't think straight. I must need more B12. I must be to the point where one a day is not enough. I don't know if anybody else suffers from all the things that I listed but I would really like to know if they do. That is just a few of the things that are wrong with me. I wouldn't want to be my doctor. 😂
And I'm angry because I tried to tell doctors for 40 years something was wrong with me. And now I'm to the point that I don't know if I'm ever going to get better. Plus I had Lyme disease for 43 years without being treated. So I don't know what damage that did as opposed to what the B12 is doing because they have very similar symptoms. And the only treatment for subacute combined degeneration is B12. And since that's getting worse that must mean that I need more B12. I've been feeling that way for quite a while. So I am going to start tomorrow by taking more B12 and keeping even better track than I am now of my symptoms.
Oh you poor thing EllaNore, you definitely have been dealing with so much in your life. My only non medical opinion to you is more treatment, more treatment and more treatment!!! I believe all your symptoms are related to your B12 and require multiple, smaller daily dosages as have been mentioned with others on this thread. SACD is a result of insufficient vitamin B12 deficiency and your recent infections and use of antibiotics have contributed directly and indirectly to the downturn in your overall health. It’s so unfortunate that doctors are unable to provide you with the answers you require. Please don’t give up and persist with your B12 treatment. My prayers and thoughts are with you. A big emotional hug also 🤗🤗
Thank you so much gone with the wind 1972. It has been a really rough month. But I do believe you are right that I should get myself more B12 I've been telling myself that for several months now. Thank you so much for your kind and very heartfelt words. I am really very grateful for the help that I get here. I think we've all been through so much. The fact that none of us really have a doctor we can count on is just terrible. I don't take antibiotics very often because I have a bad reaction to them. But I had to go in antibiotics because I have some kind of intestinal infection. I just started them today in fact. I'm going to start tomorrow with more B12. I think everybody on here is correct. It's the way I've been feeling myself and to have everybody here corroborate that makes me believe I need more B12. The only treatment for what I have is B12 and if it's getting worse that means that I need more. That's all there is to it. Thank you so much. I wish you all the best and I send big warm hugs right back to you. 🥰🤗
Hi EllaNore
That sounds like you are emerging from a horrific time but the good news is the realisation that B12 is going to help. Your anger is understandable and it will fuel you to move forward now you realise what you need to do. I have suffered many of the things you list particularly issues around the teeth and tongue and mouth and I had dreadful IBS which I have now sorted. My dentist recently told me of a lady whose teeth improved dramatically as a result of using aloe Vera toothpaste but dont go fluoride free as we need fluoride too.
Be prepared for your symptoms to begin to change, not necessarily get better, when you increase your dose. I have a simple philosophy that you can’t overdose on B12 so discomfort when I change doses is likely to be adjustment. I keep a close eye on cofactors like folic acid, potassium and iron. Do you have recent blood tests? Perhaps start a new post EllaNore so more see it and you can get more help?
Regards the antibiotics - needs must and I don’t get on with them either. But on the rare occasion I need them I take lots of pre and probiotics like raw kombucha and natural kefir and I ferment my own now including veg - delicious but I have only done this in the last year and I am convinced that has helped too. This time last year I was in a dreadful state, coujd barely walk, barely think, terrible IBS, severe pain all over my body, mouth ulcers etc etc and I spent most of my life in bed. Now I am getting back to my old self as a result of seeing what others are doing.
So yes I think more B12 and try to get to once a day and take it from there. Big hugs and look forward, I lost many of the best years of my youthful life due to poor life decisions and trust being breached, and it was hard at times not to let that loss and let down consume my thoughts but now it’s just part of my journey and who I am, it’s where I am going that matters. I look forward to walking with you on your new health path if you will allow me and others to walk with you.
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Wwwdot, You are very sweet. Thank you so much for your very sincere words. I am very sorry that you have suffered this as well. I do inject every day and have been for about 2 years so I'm going to try to go up to at least three times a day and see what happens. I've tried all sorts of things over the last 2 years and I'm left to believe that more often is what I need. I'm sure I'll get a headache and maybe insomnia for a little while but I'm hoping I get used to it and it calms down. Since you were as bad as I feel right now and you feel better, I am very hopeful that I just need more B12. It has been a heck of a ride these last 2 years. And B12 is my only treatment for everything that's wrong, so today I have already taken one injection at 6:30 this morning and I will take another at noon and another at 6:30 tonight and see how that goes. Thank you for coming along on this journey with me. I'm very grateful for everybody that's helped me on this forum. Thank you very much for being so empathetic. Wishing you a peaceful and pain-free day. Big hugs. 🥰😌
Hi EllaNore
That is kind of you to say.
If you don't mind me saying if you already inject once a day then I would increase to twice in the first instance as too much healing too quickly is very tough to take. So increase in steps, I found that when I increased my B12 I slept more and felt more tired and I attribute that to my body using the B12 for healing rather than energy. Now I don't often feel sleepy during the day and I sleep really well at night, but when I do feel sleepy in the day, I go with it if I can because I think that is when a higher level of healing may be taking place. It's not scientific but I find it works for me.
All the best
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I will do that www dot. Thank you.
Yes one time I took too much methylcobalamin and I had quite the experience at first with insomnia and severe headaches and a lot of anxiety but when it wore off, I felt fantastic. So maybe I will just go to twice a day and then in a few weeks go to three times a day. Or whenever my body tells me. You've been very helpful.
I would really like to sleep. I had 3 hours and 46 minutes of sleep last night. Today is a new day and I'm going to start my new regimen. I will let you know how I feel. Thank you very much for your insight it has been very helpful. 🤗
EllaNore
Just looked back through my PA notes my sleep improved once I worked up to three times a day - generally improvements for me within 2-4 days of changing injection frequency then plateau around 2-3 weeks which is when I upped to 4. When I got to 4 a day is when my achy teeth disappeared but I now get headache and flu like symptoms if I go longer than 5 hours during the day which clear up within about an hour of a b12 jab. Can’t wait to hear how you get on 🤞🤞🤞🤞
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You're awesome. Thank you so much. My notes are not that detailed. I had better make better notes. I'm very glad that you have found a way to manage your PA and that you have found significant relief.Okay so I'm going to go to twice a day for a few days. I have done that before. But not consistently. Today's the day I'm going to start. Thank you so much. You are awesome!! 🤗
Hi EllaNore
I will accept “awesome” 🤣 thank you but the reality is that I was desperate and had reached a rock bottom place so had to find a way to climb out … I am still climbing!
My notes have some blank days and those are basically where there’s no change from previous day so I note changes only now I am further on. In the beginning there was so much happening that I needed far more detail in my notes then. I would be first to admit my notes could be more comprehensive but they appear to be sufficient.
🤗🤗🤗
I'm sorry you experienced such terrible depths. I think we're going to be climbing for the rest of our lives unfortunately. But at least we can keep ourselves from falling into the depths of that deep dark hole.
My notes were mostly about doctor's visits and how I felt that day etc. I have detailed doctor visit notes, but not that detailed of injection and reaction notes. I keep them mentally but I should definitely start keeping better notes. Have a wonderful day. And thank you again very much for all your help. 🫂🤗
Your dodgy doctor was probably a UK doctor that went abroad for a better life, they are all pretty useless.
I have probably had an immeasurably high (above 2000 ng/L) B12 serum level since 2016.
My GP stopped requesting this test once she had diagnosed functional B12 deficiency quite early on, and started a new regime: 2 B12 injections a week. "Pointless" she said, quite rightly.
I now self inject and if I try to inject less often than that, which I have attempted a couple of times, I deteriorate noticeably. It simply does not work.
In the same way as my lips and the corners of my mouth will start to become sore, crack and bleed if I forget to use the nipple cream for a couple of days because I have angular cheilitis. It does not go away, it is just controlled.
So I have to use the nipple cream twice daily. No-one seems at all worried about that, because lanolin is harmless and works to alleviate my condition.
Ditto B12.
There is no known level at which B12 is found to become a danger to health. In part for this reason, B12 is used in huge amounts to detox patients who need toxins diluted and flushed from their system in medical emergencies. This is what my nurse found out when she was worried that she might be being requested to administer "too much B12" - and Googled "B12 and toxicity" ! I'm glad that she did: she was perfectly happy to follow my GP's request afterwards.
Without that frequency, I would not have improved. In fact, I would have just continued to deteriorate.
Where would that have left me now ?
I completely agree with you Cherylclaire. We have to manage and control these things otherwise we have repercussions. We manage our B12 levels and treat accordingly otherwise we will experience dire consequences so, doctors need to reeducate themselves with a range for B12. My initial pathology request was for active B12 ( or holotranscobalamin test as it’s called here in Australia) to confirm that at a cellular level, my B12 was sufficient but, serum B12 is automatically tested as well and hence the high levels. It becomes extremely frustrating to have to continuously defend my treatment with every doctor I see.
It's terrible that we have to educate our doctors and explain ourselves over and over again. I asked my oncologist to test my serum B12 last year and she didn't know what that was. I explained it to her. She had to do research and told me there is no lab in their network that tests for serum B12 levels. She didn't think there was a lab anywhere in the US that tests the serum levels. I couldn't believe she didn't even know what a serum B12 test was.
One of the worst feelings is when you walk into a hematologist office and they want to test your B12 levels when they know that you get B12 injections. How am I supposed to have any confidence in a hematologist who wants to check my B12 levels when I've been on injections for 2 years? I told the last hematologist that the fact that she even wants to test my B12 tells me that she doesn't know what she's talking about. So I got up and I stumbled out of her office.
The fact that all of us are saying the same things to our doctors and they still don't want to hear us is astounding to me. How many millions of people have this and how many millions of us are telling our doctors the exact same thing and they are not listening.
This is completely appalling for any doctor, before they chose a specialty in medicine they study human anatomy and how all the bodily functions work. All doctors should understand how B12 works and how detrimental if levels are low with disastrous consequences. With continuous research papers and the latest treatments continually improving and evolving , how this essential vitamin be misdiagnosed/misunderstood/under emphasised is completely beyond a joke. As my gastroenterologist at my last consultation said to me after I returned to her from a merry go round of specialists to confirm that my pains were confirmed neuropathy and was caused by insufficient B12 treatment, “I apologise for all your suffering these past years…. I believe I need to go back to medical school to be re-educated on PA and the functions of B12”. At least she was willing to accept the truth and learn from a patient’s experience and be a better doctor.
Wow I can't believe a neurologist admitted that she needs to go back to school to learn more about B12. She's a keeper. You are 100% right. They need to know exactly what kind of vital ammins we need to sustain our life. And what happens to us if we don't have them. This seems to be one of the most major things. Some of the biggest autoimmune conditions involve deficiencies. You would think that they would have training specifically on deficiencies. What do we do to make this happen? I don't know how to make this happen but there's millions of us and if we all marched at a capital or did something to bring light to this. If we could just make a movement of some kind there's so many of us and we're all suffering and literally dying. How do we get heard? I'm serious! do we plan next spring that come next spring hundreds and thousands of us will march on our capitals to speak up for better medical conditions for us. I'm ready for a movement. I think we all need to speak up at the same time. one big huge Scream.
There's power in numbers and there's a lot of us and if we could just demand that they legalize B12 for us. And that we demand that doctors go back to school. There's got to be something we can do and there's more power in numbers and if we could all plan a movement maybe we could be heard. if we just scream loud enough.
I was very lucky with my GP - she sought advice and treated me with two injections a week for six months. Then when I deteriorated again, sent me to various consultants to find out why. I had all the tests and examinations possible, so many eliminations made.
When I eventually had to start self injecting, she ensured that folate, ferritin, thyroid, liver function and vitamin D were are regularly tested and general health monitored. Plenty of support and concern for my wellbeing.
She now works in a hospital. We lost a lot of good experienced doctors when the system became so remote and telephone-based that they could no longer do their job their way. Observation and continuity of care no longer available making diagnosis so much more difficult.
Who will be left in primary care to pass on knowledge and expertise - and guide the new recruits ?
From the draft NICE guidance:
1.6.11 Do not repeat the initial diagnostic test in people who are having intramuscular vitamin B12 replacement.
nice.org.uk/guidance/GID-NG...
Appears to be a very simple statement that is almost impossible to misunderstand.
Thank you for the link helvella, this is a simple statement but is misunderstood by many doctors. I have saved this link for future reference.
>>PA journey, not one doctor flagged my extremely low B12 but, now flag my extremely high B12 and tell me this is a problem??
Valuable observation. The confidence of the physician in each case is the same even though the opinions are mutually exclusive.
Hi,
Maybe you could pass on these articles to your GP.
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from other countries)
stichtingb12tekort.nl/engli...
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from other countries)
b12-institute.nl/en/diagnos...
PAS website has a page for health professionals. Some of the info may be UK specific but hopefully of interest to your GP.
Health professionals can join PAS as associate members at no charge. They welcome members worldwide.
pernicious-anaemia-society....
Has your GP heard of Club B12?
This is a group of researchers and doctors who are looking into B12.
They have regular zoom meetings and have members worldwide.
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Have you searched online to see if there are any regional B12 deficiency guidelines for your part of Australia?
I found a few documents when I searched for "Australia B12 deficiency guidelines".
Might also be worth looking at guidelines for macrocytic anaemia.
Macrocytic anaemia can be associated with B12 deficiency and Folate deficiency. Red blood cells are larger than normal in macrocytic anaemia.
There's lots of B12 and PA info in pinned post "Various PA/B12D resources". Pinned posts are on right hand side of screen if on computer. Scroll up or down to find them.
When I see a doctor who is available immediately, I expect this sort of thing. That is why they are available immediately.
Veliblue has provided the link to the latest paper on B12 therapy that has just been published in the BMJ - British Medixak Journal (220th Nov 2023). Please print that off and show this GP practice. We patients are not just doing our own thing. There are experts who have reviewed the literature and treat their patients appropriate ly.. Hopefully this paper will address their concerns and persuade them to listen when we tell them what helps our symptoms
"He also suggested that this high levels could be contributing to my slow recovery from my neuropathy."
That's insane, because UK guidelines say injection every other day for nerve damage, as long as there is improvement.
3 injections a week is likely to give high serum levels, and that is supposed to help with nerve recovery.
Tell him as kindly as possible that those who wrote those guidelines knew better than him, and that he is a danger to his patients and an ignorant moron who should be ashamed of himself.
Hi. I recently changed from injecting every week to EOD. It was scary because I feel a swollen tongue, numb face, head, and limbs, and have had more anxiety than usual but no panic attacks luckily. My eyes have been hurting and my head feels foggy. But it seems that a lot of people feel like that when they up their frequency and it gets better over time. And I just think it does not make sense for B12 to cause nerve degeneration. Good luck with you PA journey.
Perhaps the doctor confused b12 with b6 which can cause nerve damage if given in large doses in the form pyridoxin. B6 comes in many forms, pyridoxin is often used in supplements, and in large doses it can apparently block the effect of the active form, P5P and because of that cause symptoms similar to b6 deficiency. Apart from high doses of b6/pyridoxin I don't think it's common for vitamins to cause nerve damage.
Cripes. Hi each, just found this! I'm new as well.
I found a couple of research papers done recently on oral supplementation, both of which seem to indicate that it is in fact treatable with high doses of some form of cobalamin taken orally, 1000 or 2000mcg daily. I'm currently on hydroxocobalamin IM 3 monthly, and 2000mcg methylcobalamin subsublingual daily. This seems OK for me. I started on the oral because I could feel the IM wearing off after about 7 weeks.
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
I've I've also had horrendous problems with "professional ignorance" and arrogance that others have described, so i'm glad that, for now, there seems to be some sort of solution, even though it might be temporary. I tested positive for autoimmune gastritis, but no further follow up has ever been recommended.
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