My mum is very poorly at the moment. She already had mobility issues but over the past few months has been complaining of loss of feeling in her hands, to the point that she has now lost any purposeful use of her hands (can't hold anything).
She is also completely exhausted.
She has been assessed and is awaiting an MRI scan, which could take months, but in the meantime she is bed bound, possibly to be admitted to hospital after the holiday weekend.
I was told that all her blood results were fine but when I asked about B12 serum level, it's 250 and the scale is 195-750. I pointed out that the result was barely in range and that I have PA related B12 deficiency so familiar with symptoms, mainly the neuropathy, and asked if B12 supplements could be prescribed in tablet form or injections, as a trial while she waits for an MRI scan.
As she is "in range" they cannot treat her for B12 deficiency, neuropathy only occurs with lower levels, blah, blah, blah.
I have B12 ampoules, needles and syringes for myself, and have considered trying her with it, but worried that she may have an adverse reaction as she has never had a B12 injection before and could put her, and me, in a serious position should things go bad.
What is the real probability of someone having an adverse reaction to a B12 (hydroxocobalamin) injection?
She is 82 and has no known allergies.
I have ordered high strength B12 tablets in the hope that she does not have an absorption problem but injections would have a better effect, if her symptoms are B12 related. If not B12 related, at least it will have been ruled out.
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All her other results were more towards the middle of each respective range. Even folate, which surprised me, I thought it would be in the higher range as she has been prescribed daily high dose folic acid tablets since November.
I know of people who have done their first jabs in a hospital car park so they can get help if required and my friend gave her husband his first jab there. I have suggested this to people in the past. I can appreciate that is probably not an option for you.
Various beauty therapy places offer B12 injections and it has been reported that many do not have training or facilities to cope with any adverse reactions. I'm not saying that the beauty therapists are uncaring; they are just unaware, probably because it is so low risk.
For that matter, I doubt many of the medics in surgeries or health centres would know what to do, if their ignorance around the subject is taken into consideration!
I appreciate what a difficult position you are in and ideally you are asking for clearance that no one can give.
I agree with you that it is most likely a factor in her problems, and feel your risk assessment is diligent.
Hi Denise,Thank you for your reply. I'm not asking for clearance, just trying to guage the risk factor. I've ordered high strenth oral B12 tablets and hoping they help. It's a worrying time but also a very frustrating time, even my GP admitted his frustrations with local hospital.
He admitted her into hospital a month ago to get tests done to try and find out what was going on with her hands. Hospital gave her a head CT scan, said she hadn't had a stroke and sent her home. When I asked what the next steps were regarding her hands, they said "see your GP??"
We just seem to be going around in circles.
GP got hospital at home team involved, they said that she needs to be seen by a neurologist and the quickest way for that to happen is to be admitted to hospital...... again.
Ambulance transport, doctors, nurses, neurologists, MRI's. A lot of money and resources but they won't try a B12 jab while we wait.
I appreciate that they have guidelines to follow but I've read so many similar stories on here and any time wasted only adds to the problem.
it isn't so much the probability of a severe allergic reaction as the consequence of a severe allergic reaction such as anaphylactic shock which could cause death within seconds. Better to wait.
Was it the first time your mother had a serum B12 test. If she had a previous test and the result had been significantly higher (20%+) then that would point to an absorption issue.
Sorry you are having to do battle with ignorance about how B12 deficiency works.
Regarding the blood tests. I asked for bloods to be done a year ago, when she first starting noticing a loss of sensitivity in her fingers, at that time I only suspected a possible general deficiency as her diet wasn't great. She has already suffered from foot drop for a number of years, which I now think may be related. She has also suffered with severe anxiety for her whole adult life, which also could be related.
That blood test started a roller coaster of a nightmare, which I won't trouble you with, that resulted in a period of 6 months in hospital (3 different hospitals) due to a suspected kidney problem.
The B12 result I posted was the last test she had around a month ago, they can't find any of the previous test results.
She had another blood test done yesterday so will wait and see.
Vitamin B12 injections are given to a a person who needs the benefit given by vitamin B12 injections.
My first doctor failed to take on board that my health has deteriorated and I was desperately in need of receiving the Vitamin B12 injections. Fortunately, the Locum doctor had already said that my health level's had deteriorated badly - and then I ended up with a stroke. After the stroke, my doctor still did not read about the importance of giving vitamin B12 injection - until my health levels had again dropped badly - and when I finally received the importance of having Vitamin B12 injections, my health levels definitely improved upwards.
Below 300 serum level is equitable to receiving Vitamin B12 injections.
Doctors are fearful rather than seeing the best vitamin such as B12 does in the end go to the right patients.
Problem is that firstly, it is said that people who can get a vitamin B12 by injection through a beauty clinic and your argument says that "B12 serum level, it's (read) as 250 and the scale is (stated) as 195-750"..... Please take note that your mother's unhealthy physical response does sounds as if your mother maybe in need of having vitamin B12 injections - as she sounds as if she suffering badly.
Since I am still a Atrial Fibrillation patent, and have some knowledge that Vitamin B 12 was chosen by two knowledgeable doctors who know what they are doing. The experience and knowledge I am talking about is the good effects of Vitamin B12 to help resolve your mother's physical weakness's. Normally, no doctor would suggest that Vitamin B12 was right - and since I was a stroke patient, I then recovered successfully health wise- in fact excellently. I speak from the experience of Vitamins B12 impact.
"Vitamin B12 supplements will only improve symptoms such as tiredness and lack of energy if they are caused by low vitamin B12 levels. It may take a few weeks before your vitamin B12 levels and symptoms (such as extreme tiredness or lack of energy) start to improve.10 Mar 2021nhs.uk › medicines › c...Cyanocobalamin – vitamin B12 used to treat and prevent vitamin ... - NHS"
I think Point 1 and Point 5 are probably the most relevant in above link.
Is your mum happy for you to act on her behalf?
If so, it may be worth her putting this permission into writing to her GP if able to and signed if possible.
Does your mum have capacity to act for herself?
If she is at risk of losing capacity to act for herself in the future then worth looking into power of attorney. There are two types, one for financial matters and one for health and welfare.
From Summary of BSH Cobalamin and Folate guidelines
"In the presence of discordance between test result and strong clinical symptoms of deficiency, treatment should not be delayed to avoid neurological impairment"
( in my mind this means if you have the symptoms but test result is normal you should be treated)
It shows when people with normal range serum B12 should be diagnosed with PA.
From NICE CKS B12 deficiency and folate deficiency
"Antibodies to IF are very specific for pernicious anaemia, however they are only present in around 50% of people."
(meaning half of people with PA will not get a positive result in IFA Intrinsic Factor Antibody test)
Neuro consequences
You may want to point out in any letter or conversartion to GP that delayed treatment or inadequate treatment could result in permanent neurological damage including damage to spinal cord.
PAS article about SACD, sub acute combined degeneration of the spinal cord
If she's symptomatic for B12 deficiency, has her GP got a list of all her symptoms, especially all neuro symptoms and definitely any affecting spinal area?
I used PAS symptoms list below and added extra symptoms at bottom.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
If you have the time and energy, I suggest you look at the local B12 deficiency guidelines for her ICB (Integrated Care Board) or Health Board.
If you can't find them online or by searching forum posts here then best bet is to submit a FOI request to her ICB/Health Board asking which b12 deficiency guidelines are used locally and for a link to or copy of them.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, common wrong ideas about B12 deficiency, more UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
I’m new to this forum. I’ve been reading comments from people with Pernicious Anaemia who are suffering from inadequate treatment. I too have PA and have also dealt with inadequate treatment. My journey has also been rough as doctors could not explain the causes of my peripheral neuropathy, especially in my feet and hands. I was told that all my symptoms were diagnosed as ‘Fibromyalgia’. The treatment was anti depressants. After a few months of treatment with antidepressants, my symptoms of peripheral neuropathy continued with no change. Then I began questioning the diagnosis of fibromyalgia. Searching on the internet for days on end trying to find an explanation for my symptoms. Then I stumbled on a website to purchase Methylcobalamin B12. Which was delivered in a small vial in a powdered form. Saline solution was added to the powder and followed the enclosed instructions. I purchased insulin needles and swabs and began to inject myself 1ml everyday. In my research into the importance of daily B12, I discovered that you cannot overdose on B12 and any excess B12 is excreted into urine. No one should experience any adverse reactions to B12. As you all know, B12 is not found in any plant matter and we need this essential vitamin daily.
This self injecting process began for me in August 2022. At the height of my neuropathy at that time , I lost all hope with the medical profession when I begged them to help me. I questioned them if my symptoms were the result of insufficient or the incorrect B12 treatment every three months. They assured me that every three months is the current medical guidelines and my symptoms were not related to my Pernicious Anaemia. Today I thank the Lord for making me a stubborn person and not giving up. Within the first two weeks of my self injecting my ‘pins and needles’ significantly reduced. The sharp pains and burning feet and difficulty walking are still with me today. The last month I had a nerve conduction test on my feet. The neurophysiologist concluded that my large nerves are normal and the explanation of my symptoms may be ‘small fibre neuropathy’ which requires a patch skin biopsy (from a neurologist) which my appointment is in mid May to confirm my suspicions. In the meantime, I continue with my daily Methylcobalamin B12 injections. I have also found Methylcobalamin and Adenosylcobalamin in the form of skin patches. I also purchased Methylcobalamin and Adenosylcobalamin in the form of sublingual drops. With all these different methods I hope that some B12 will be absorbed.
My GP has suggested that I take Duloxetine for the nerve pain, which gave me some relief for two weeks then the pains returned. I also researched if medicinal cannabis may assist people with peripheral neuropathy. Because I’ve been in so much pain for last four years, I pray and hope that my nerve damage will eventually be reversed in another two or three years. My GP now has some empathy for me as I gave him a printout from the ‘Pernicious Anaemia Society’ when and why the current treatment doesn’t work. He now is fully aware of my self injecting and all the other treatments I’m taking and he is fully supportive of me. My message to all who have Pernicious Anaemia, don’t be afraid to try any method possible to give your body B12, this vitamin is so important to all human beings, especially for people who are suffering from Pernicious Anaemia. You cannot overdose on B12 so, please try every option out there. Become an advocate for yourself and take control of your health. I firmly believe in the more knowledge you have about PA the more power you have over your body and health. The Pernicious Society has been very helpful in confirming all the suspicions that I had when I was first diagnosed with PA and that all my symptoms were not in my head.
"They assured me that every three months is the current medical guidelines"
This is wrong in some situations....I am glad that you found a way to get the treatment you needed.
I had the same experience ...labelled with fibromyalgia plus other labels including ME/CFS, hypochondria, psychosomatic symptoms, MUPS (medically unexplained symptoms) etc....
Link below describes UK treatment patterns for B12deficiency
I would have expected you to have had pattern for those with "neurological involvement", loading injections every other day until symptoms stop improving then maintenance injection every 2 months.
There's no excuse for GPs not being aware of NICE CKS and BNF guidance on treatment for B12 deficiency. I'm willing to bet your GPs have a copy of the BNF book on desk or bookshelf.
The same info in BNF link above can be found in Chapter 9 Section 1. 2 of the BNF book.
Always worth looking at the local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board as these sometimes differ from NICE guidance and BNF guidance.
Other forum members have reported that skin patches don't work. Some get benefit from high dose oral tablets but these don't work for everyone. Injections work best for me.
The problem is that as you get older you need higher levels of B12. A serum vitamin B12 level between 200 pg/mL and 900 pg/mL is considered normal, but a threshold of 300 to 350 pg/mL is recognized as a marker for a desirable status in the elderly. ncbi.nlm.nih.gov/pmc/articl....
So with a level of 250 she is B12D and needs some form of supplementation. I take B12 fluid orally. Oral B12 supplements can only be absorbed passively and only about 1% of the B12 supplement will make it into the blood. So you need to take lots. The body can only efficiently absorb a small amount of B12 within a given period of time. In order to help B12 absorption it is recommended that you divide the dose over the course of the day. I buy 5000mcg B12 liquid drops and dilute them in water and drink it throughout the day. I take about 3 droppers full (15,000). Why not try this on your mother. It won't harm her. You will know if it's helping her as it usually works quite quickly.
I find liquid is better but if you want to give her tablets she will need at least two or 3 a day. You can buy liquid from amazon amazon.co.uk/Nutroliq-Vitam...
If you can afford it I would give her the liquid instead - using the method I use. I used to take tablets which did help but I didn't get true healing until I switched to liquid. I think it is because it is so much easier for the body to absorb.
I’m not sure where you are but there are some medical clinics that give B12, the chain I used are called Reviv. They are staffed by ex nhs nurses and I had my first one there.
Dr Myhill who recommends b12 for cfs says this ‘It is theoretically possible to be allergic to B12 but in the thousands of injections that I have sanctioned this has only ever occurred after several injections and caused local itching, redness and swelling (although the commonest cause of redness and swelling is poor injection technique) in a handful of patients.’ I would still not risk it and get the first one in a clinic.
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