I am a bit clueless doing this but I have been worried about B12 and needed, I guess some supportI was first diagnosed with very low B12 about 15 years ago. They gave me the multiple injections and had I suppose booster injections at first. Then was told my B12 was fine
About a year later, again very low B12, if that's possible? I had the terrible weakness, awful bone pain and all the other symptoms that had led to injections first time and actually had GP call me in as emergency and gave me first injection and then again the multiple injections. That time I was kept on booster injections until 2021 and then I don't know why, probably the pandemic they stopped. I thought maybe I should still have them? But another dr. Said my blood was fine. I've found my memory is quite bad and I get easily muddled. So maybe just my ME? Or maybe early dementia? I feel physically and mentally just so awful. Like my life is draining away. Sorry for over dramatics! I guess it's just severe loss of energy. If it was B12 I would think I would be more serious, I mean probably in hospital.
Luckily, I think, I had to have a cholesterol and liver blood test as I've started having problems with them and blood pressure won't reduce even with medication. New HCA asked why I wasn't having B12 anymore and I wasn't sure so she went to GP who had started the injections who has said I have to have them again so will start again next week
I am just so confused about it all really. And sorry I've waffled on. I guess I'd like to know if all these awful symptoms will get better as I have so many things going wrong in every part of my body. Like I'm just suddenly imploding!
Thank you if you have managed to read this
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JaneHope
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With the reinstatement of the injections, your symptoms will get better (stick with it because they may get worse before they get better)
This will, hopefully, clear your head enough to figure out what the best thing is for you. A lot of us on here self inject at various frequencies because we require them more frequent than our doctors prescribe.
You will, in time, find what's best for you. hopefully it will be exactly what your doctor prescribes. If not, push for more. And if that fails, there is plenty of help on this site if you need to self inject.
The main thing is to get the injections back underway which you have already achieved
Thank you. So grateful for a reply as now feel validatedI'm not sure about self injecting. I have heard about it before and did bring it up with Dr's early on. But they were so horrified at that suggestion I thought it best to let them get on with it!
One of the symptoms you describe is bone pain. From personal experience I had this when my vitamin D levels were very low. So it would be an idea to find out what your levels are. Ask your surgery for your blood test results (and the ranges) and if there's no vitamin D result ask the GP for a test.
It would be very important to find out if you've been diagnosed with Pernicious Anaemia so get any previous blood test results from the time you were first prescribed loading injections. Depending on where you are in the UK and your surgery, blood results are often available online for you to see, you just have to ask at reception. The alternative is to get them to print them out for you. Some surgery's are more helpful than others but you are legally entitled to your blood test results!
There are many experienced and helpful members on this forum so don't be worried about asking anything you're unsure of. I first posted on this forum a few years ago when I was having low B12 issues.
I'm familiar with that imploding feeling too! I'm sure there'll be others here that have felt the same at some point. Keep reading posts on the forum and you'll soon have more knowledge about B12 deficiency and have the information to help yourself work through your issues with the support of the members here.
Thank you so muchYes I do have vitamin D problems and have had prescribed medication on several occasions. I did use to get regular blood tests to check all these elements but I think everything got lost during the pandemic
To be honest my memory has been so bad even I forgot! I'm finding memory problems and confusion are much worse than pain at moment
Thank you and yes HCA was lovely. Only been there 8 weeks but seemed very dedicated and going well out of the way to help. Hope she will still be the same after longer experience as she is very empathetic at moment.She will be giving me B12 next Friday as that is first appointment that is free. I will have to find some treats to take with me to show my appreciation
I tend to post a lot of info so might be best to read it over a week or two so it's not so overwhelming.
Some links I post may have details that could be upsetting to read.
I'm glad your injections are starting again but from what you've said, I don't think your B12 injections should have been stopped 15 years ago.
B12 deficiency requires prompt treatment with plenty of B12. People with PA need B12 treatment for life. There are other causes of B12 deficiency that need lifelong treatment.
Delayed or inadequate treatment can increase the risk of developing neurological problems.
Symptoms
Does your GP have a list of all your symptoms?
I used one of the PAS symptoms lists below and added extra at the bottom.
When you were first found to have low B12, what did the GP think was causing it?
If your diet was good with plenty of B12 rich food, I would have expected them to at least test you for PA (Pernicious Anaemia ) and coeliac disease, both autoimmune diseases that can lead to B12 deficiency.
Were you tested for PA and coeliac disease?
If you're not sure, you could access your medical records to check.
They have a good helpline. Put "helpline" in search box on Coeliac UK website.
People with coeliac disease can get a negative result in the usual blood test (tTG IgA) if
1) they have IgA deficiency.
People with suspected coeliac should also have a Total IgA test to check for IgA deficiency. People with IgA deficiency will need a different blood test to check for coeliac disease.
2) they were not eating enough gluten prior to having tTG IgA test.
Also search for "NICE guideline Coeliac disease"
There are other possible non dietary causes of B12 deficiency besides PA and coeliac disease eg some drugs/medicines, H pylori infection, internal parasites eg fish tapeworm, excess alcohol intake, Crohn's disease and others.
I'll add more to this reply later today so check back later.
If you have enough energy, I recommend searching for and reading these UK B12 documents...
1) "NICE guidelines B12 deficiency" - published 2024
NICE stands for National Institute for Health and Care Excellence.
I have reservations about this document. In my personal opinion, I think there's too much emphasis on treating people with high dose oral B12 as an alternative to B12 injections.
2) "NICE CKS Anaemia - B12 and Folate deficiency"
CKS stands for Clinical Knowledge Summary - updated 2024
3) Try to find the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England. Health Boards in Wales/Scotland.
The advice in these local guidelines can sometimes differ from that in NICE documents.
If you can't find the local guideline for your ICB/Health Board online, best bet is probably to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
Published several years ago so some of the information may need updating.
"What You Need to Know About Pernicious Anaemia and Vitamin b12 Deficiency "
By Martyn Hooper, former chair of Pernicious Anaemia Society.
"Could it Be B12?"
by Sally Pacholok and J.J. Stuart
Sally Pacholok is a US campaigner on B12 deficiency issues.
She has some articles and videos about B12 deficiency online.
I also read “Vitamin B12 deficiency in Clinical Practice” (subtitle “Doctor, you gave me my life back!” by Dr Joseph “Chandy” Kayyalackakom and Hugo Minney PhD ".
Films and videos about PA and B12 deficiency
Some may have scenes that could be upsetting to watch.
Thank you for your very dense reply. I obviously mean quantity. I may not always get the right words as for some reason even the simplest words evade me and I'm making do with what feels nearest to what I'm trying to express!Along with that is confusion of trying something I haven't done before ie. Trying to find people and info to make sense of what is happening.
I will try to make a short statement of my experience with health. Not so easy when you are old!
I was dxd with asthma at 2 years old but Dr's were very confused at the oddness of my asthma. Not quite like others? Most things could set off my asthma especially exertion so I was banned from PE. After an attack although breathing back to 'normal' I was always fatigued and took days to recover. Add to that digestive issues and Migraines and if I ever got to school they thought I was just a new kid!
So dxd as having general malaise, whatever that means?
I have struggled through life with almost permanent infections! I caught everything all the time. At one point I had a really good GP with very good respiratory experience who sorted my asthma which was a relief as i spent most of my 20s having weekends and sometimes weeks in a hospital bed due to asthma attacks. But he didn't what the heck else was going on with me! He felt I had a virus stuck in my body which never left? He did more than any other Dr at that point.
I, myself thought I had ME which I felt made sense of a lot of my problems but couldn't find a Dr that would take it seriously. Just felt like I was an anamoly! With a mass of symptoms that didn't fit any 1 disease
Had to wait until I was 45 to get a diagnosis of ME and told I also had fibromyalgia. About the same time I was getting blood test results showing I was low in many different vitamins/minerals so I got B12 injections, D tablets and a multivitamin/mineral prescribed to me. My Dad was going through similar problems. He had been dxd with Parkinson Disease and we had our B12 given at same appointment!
There are a lot of autoimmune diseases within the wider family plus the usual kidney disease and heart failures. I guess it's so prevalent within the family that we are not surprised if we are ill. It would be more surprising if someone was fit and healthy!
I hope I haven't written too much, just trying to give a basic overview. But it seems noone is really sure what is going on with me apart from recognising that I am always ill sometimes much worse than at others
"even the simplest words evade me and I'm making do with what feels nearest to what I'm trying to express!"
Look up "nominal aphasia b12 deficiency" when you have time.
B12 deficiency can lead to symptoms similar to Parkinson's eg involuntary movements, tremors etc.
Also low B12 levels can worsen the symptoms of Parkinson's.
B12 deficiency can lead to gait issues which can lead to misdiagnosis as other neurological conditions.
If interested, look up "B12 deficiency SACD". There may be some details that could be upsetting to read.
Delayed or inadequate treatment increases the risk of developing permanent neurological damage asB12 deficiency can cause damage to the myelin layer around nerves. In severe cases, the spinal cord may be affected.
PAS have an article on SACD - sub acute combined degeneration of the spinal cord.
B12 is a co'factor of neurotransmitters such as dopamine and seretonin. Low B12 levels can lead to low levels of neurotransmitters.
If you are diagnosed with PA, I hope the doctors will check test your dad and any other relatives with neurological or mental health symptoms.....it can run in families, so can coeliac disease.
I have struggled through life with almost permanent infections"
B12 deficiency can affect the immune system.
I also wondered if you'd ever been checked for immunodeficiencies.
These are deficiencies in immunoglobulins, antibodies that help fight infections.
Wow! And there's much much more. Thank you for all of this but I will be struggling to get through it all to be honest. I'm more used to people shrugging and saying I don't know!! So this is more than adequate. I mean much much more. Can't think of the right word.
My Dad has unfortunately gone on, 2 years now. I never did enough to help him although I tried my best. He had Parkinsons for a lot longer as he had the fighting while he was dreaming which is an early symptom which we didn't know at the time. Started in early 1990s My Mum couldn't stay in same bed as she used to get punched. He didn't know he was doing it and he demolished many many bedside tables in his sleep! Unfortunately they decided to move just when he was getting tests and so on for his Parkinsons and new area would not agree that he had Parkinsons. I eventually had to take him to a private consultant in Parkinsons Disease in 2007 who could actually see all his problems that we had noticed and said it was quite late for him to get the meds that would have helped more earlier on So I guess I really let him down.
My Mum had sub arachnid haemorrhage when she was same age I am now and died alone as I was 2 hours too late when I got to her.
I do have issues with spine but i think that's more down to me falling off the back of a motorbike when I was 20! I still have issues where my spine 'locks' and I can't move until it lets go again. I get like an electrical pulse down my back which is excruciating and my limbs are then totally paralysed but it only lasts 5 or so minutes. Scary when it happens but it always recovers so I think it is just the old physical trauma. My own fault really
Anyway sorry if I have overshared. I just appreciate all the effort you have made with all the info you have shared. Will probably take me a while to get through!
In UK, a diagnosis of ME/CFS is supposed to be a diagnosis of exclusion.
This means doctors should not give this diagnosis unless all other possible diagnoses (including B12 deficiency) are excluded. Sadly I think many GP surgeries lack the resources to ensure other possible diagnoses are excluded.
You might find it interesting to read "NICE guideline ME/CFS".
Once I started B12 treatment, level of fatigue improved greatly although this took some time as I'd been left untreated for so long. Most of my other symptoms including neurological symptoms improved or disappeared.
Just curious but have you got symptoms in and around your mouth that suggest B12 deficiency?
If doctors query whether or not you need B12 treatment, these can be worth pointing out as usually very visible. Maybe take photos/videos of oral symptoms and any other visible symptoms as proof especially if these symptoms are intermittent.
This recent forum thread mentions oral symptoms of B12 deficiency
Search for "Wolffenbuttel B12 deficiency" to find other articles he's written, including one for Mayo Clinic in US and one for BMJ (British Medical Journal).
His most recent article was a review of B12 treatment/ diagnosis which might be worth passing to GP.
Search for "Wolffenbuttel B12 deficiency overview 2024" to find it.
In my personal opinion he's one of the few doctors who understands B12 deficiency.
4) B12d.org online talks may be of interest to GP.
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Newbie here with aching limbs
GREAT RESULTS FOR 3 DAYS, THEN NOTHING
Please help 🙏
Help 😲
Frustration of the UK system
