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!
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!
Lots of people self-inject. I get my husband to give me my injections. It is so much more convenient than going to the doctor every time you need an injection. It also allows you to choose a schedule that leaves you in excellent health.
Aahh, just seen you are in Canada. Maybe should move there? I'm in England. I think Dr's here would all have heart failure letting patients loose with needles and drugs!
Just not done. I might decide to start injecting illegal drugs. That was part of conversation telling me no 15 years ago. Where they think I go to get all these illegal drugs? I seriously wouldn't have a clue! But everything has to be taken down to the lowest possible denominator if there are people who could possibly do it then we probably would all be doing it!
Lots of people in the UK order from Germany. You can find info about that on these pages. I am l lucky that in Canada we can get the injectable B12 and needles over the counter without a prescription.
I'm in the UK and my doctor knows I self inject. Many, many people SI here in the UK. My GP arranged for the nurse to show myself and my husband how to administer the injections. I get some injections from my GP, enough for one a month, and I buy the rest from Germany. It is appalling that we have to resort to this but without it I would merely be existing, not living. I was not willing to leave my health, and my life, in the hands of people who could, but wouldn't, give me what my body desperately needed. Good luck to you
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!
Never think your oversharing I’m embarrassed of over sharing and so try not to but you have brought a tear to my eye you think you haven’t done enough …as my dad yrs ago was told he had M.E …one gp said he had a panick attack we then was told a that gp was wrong it was a stroke n 10 yrs ago onto pca Alzheimer’s and type 1 diabetes also stoma bag through bowel cancer…after researching on here for a very short time im thinking undiagnosed b12 deficiency he’s later is now having injections maybe the main thing they should have diagnosed earlier also studies are showing high homoscytiene are showing links to Alzheimer’s/dementia also heart problems maybe as I have you could look into having this test
because no one is really aware of these causing so many symptoms … please don’t think it’s your fault we can only know so much …together we can help make future better for our families that’s my comforting thoughts right now ..the more I read it’s as simple as vitamin b12 for starters
In the world we have amazing scientists / researchers and normal caring people on this forum they really do care …the hardest part is to convince the system but over history it’s proven but hard they get there with so much determination …
On positive days I absolutely love life and living and after reading about your mum and dad on these days I have the most amazing memories I treasure ….we have amazing families people we care for and they truly care for us
I do go back and read when I’m not feeling so overwhelmed with life and it genuinely helps with my positivity so don’t worry 😉 there’s no way we can keep up with everything…but sharing does feel like caring
Thank you for comments. Extremely kind. I need to get up as I do all my reading in bed! It's easier for me that way as I find days physically exhausting. Although I shouldn't as I spend most time dozing on sofa!
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.
You are among friends here, and you are not alone in your experience. Everyone of us encounters a different panorama of symptoms, complications and mismanagement along the way, but you have been given great advice here, and I encourage you to stay in contact- there are no silly questions. Here we understand what it is to implode from time to time, too. This is an overwhelmingly complex disorder.
I strongly urge you to keep a diary of your symptoms. This will help you while your memory is poor and encourage you as you recover. Do not be discouraged if symptoms get worse before they get better..... it is a long and complex process to undo the neglect.
Hurrah for a savvy HCA... 🫂 Savour every injection and don't let anyone intimidate you if you need to ask for more.
you are definitely not waffling on …it’s so interesting but very sad to here people describing extremely similar symptom's to myself… who haven’t been truly cared for by a system which isn’t always fit for purpose …seems you should have always been receiving b12 injections ..
I haven’t been diagnosed with b12 deficiency but I’m in process of private active b12 and other tests 1st time in my life away from nhs ..I have all other symptoms and anemia I have family with pernicious anemia's and b12 deficiency my grandmother has been diagnosed for nearly 40 yrs …but it’s definitely not been easy for her to get them to inject every 10 weeks rather than 12.
I am worried with my IFAB ,some of my liver being abnormal..rising cholesterol and diabetes levels..all of which gp signed off as normal …I’m now doing blood pressure for a weeks diary as nurse for annual review was worried it’s going high and I’m on meds so it shouldn’t
I’ve just been to gp for upper left abdominal dull ache with huge bruise underand left breast with side pain…to be told I’ve probably cracked a rib ..I went for X-ray to be told I haven’t which I never thought it was …feeling all over the place with the help of gps sending me to any tests other than ones needed
over recent years as you are describing some days can’t quite put your finger on it so many symptoms …days and weeks unbearable fatigue and brain fog my parents were worried I have early onset dementia knowing my dads Alzheimers …im 2 days as active ish as can be 5 days recovering it’s awful …
lovely to meet such great interesting people on this forum and I so hope you get the right treatment..all of us so need
Thank you for kind comments. I'm feeling better about what is happening to me now it feels like people are understanding what I'm saying even though I am definitively struggling putting words together.I was very interested in you saying you have high BP but are taking meds? I too have been taking BP meds (amlodopine) for, wow, I can't remember how long, time is kind of fuzzy! Have been experiencing high blood pressure but have been frustrated with medical people as every time they ( Dr's, nurses, ambulance persons) take blood pressure and it's high they refer to 'white coat syndrome' so I am in despair thinking I will have to have heart attack or stroke to be taken seriously!
Sorry I'm a bit upset as I had a 24 hour BP monitor a few weeks ago and mostly my BP was raised over the 24 hour period and was told it would be reviewed and probably meds changed but not heard anything! So feel like noone taking me seriously. I cried when I realised my BP was so unmanaged and thinking why am I bothering still taking the prescribed meds? I try not to think about it as it's better to stay calm
The thing that annoys me so much is I used to be a nurse. (RMN)I know it's a long time ago and I struggled working through all my physical disabilities so had to give up but I do have some experience! Plus my family were also Nurses or linked to jobs in hospital environment (Maternal Grandfather was Archtect/Surveyor and was Head of Housing side at hospital I worked in and both parents and wider family worked there!) So it's a stretch to say I would be anxious consulting medics plus all the time I spent in hospital when I was young. I don't recognise the Health Service I worked for. But I guess that's because I'm old!
Sorry I'm waffling again!
I too have all the anomalies you are saying. Liver, cholesterol, etc. I know something is wrong as everything is off, if that makes sense, but I struggle with my memory so when a Dr calls for a telephone appointment, I forget mostly everything I needed to say and like you worry about dementia. Although I think there is definitely more going on, with both of us! I was diagnosed with chronic Appendicitis about 2 years ago as I had painful stomach but I'm not sure it was a correct diagnosis and since it was dxd it's never been mentioned but I can't believe being in so much pain isn't causing some of the other anomalies. I wish I'd done more general training when I was a student nurse! My poor head is so confused I'm struggling to make sense of anything!
I think with what Ive been researching …We’re in no man’s land ..as some people call it … I’d call it afraid and waiting to die …some days my heart is thudding in my chest not just Palpitations any more because I made a cup of tea or couldn’t stand to grate cheese..I too in the last 6 weeks have mentioned more than once to my husband and my gp I’ve had a blanket covered diagnosis and anything else happening to me isn’t being considered I’ve been sent home to die or wait until I over do it have a stroke or heart attack and have to call a ambulance that’s the real feeling (let’s hope we don’t) ……we will make sense of this …
today I’m on a positive route….otherwise I’d be screaming
as I went for a second opinion this week (first time in my life) only to feel as the two doctors are drinking buddies was one of the worst experiences in a gp surgery history ..I was so upset because being my age I too have grown up with respect for others and really believing in the system
I have got to brush myself off n carry onwards and upwards as I’m really sure lots are on here because they felt like us
but I’m really am after being upset for a couple of days ..feel like I’m going to take the world on even with last bits of sanity my gps are making feel I haven’t got …because obviously in there heads I’m depressed ,neurotic white coat syndrome hypochondriac (I certainly am not and I know you are not)
I’m on same bp 10mg amlodopine tablets as you and every bp reading this week have been high …im waiting on my homoscytiene results as this is helping with me discovering if I might go on to dementia and at the moment any knowledge I can pass on to my children and grandchildren is my comfort
Big hugs and welcome to the gang!I'll keep it simple, because when you start out it's hard to even cope with the complicated.
You should be on loading doses every other day until you neurological issues are better. That's your memory loss, worm fistakes 😉, and brain fog, along with pins and needles, super slow reflexes, strange pains. This is written in the new NICE guidelines.
Once you are getting enough vitamin B12 you need to boost up on various other co-factor nutrients to get it working as effectively as possible.
Folate B9 - l-methylfolate is better for some people than folic acid. B12 works hand in hand with folate in many body processes. It's in Liver and green leafy vegetables too.
B6 - P5P because B12, B9 and B6 work to clear homocysteine from your liver. Homocysteine is a toxin that the body generates as protein is processed and recycled in the liver. If it can't break it further it gets bound to fat, causing lots of problems*.
Igennus do a Super B-Complex you can buy from Amazon that contains all the Bs in their most easily absorbed form.
Omega 3 fish oil. There's a specific fat, DHA, in fish oil that is the easiest form for your body to turn into brain and nerve sheath myelin. Sounds like you have a lot to fix.
Zinc because that helps the omega 3 and your immune system.
Vitamin D because you are short and it tok is needed for lots of things and no-one runs around naked at this time of year.
Magnesium for ATP energy release in mitochondria and because deficiency is associated with *cardiovascular trouble and type 2 diabetes, as is high homocysteine., also muscle cramps. I like the 'Better You' magnesium lotion.
I hope this helps. I felt a lot better once I regularly started taking the right co-factors as well as self injecting every other day. But it does take time to reverse out, so take it gently. Be persistent with those bally medics.
Thank you I don't think I'll be able to take so often? I remember I got it down to 6 weeks from the 2 months Dr had wanted and had to insist as every time I went to a Nurse for the injection, they would argue with me that they couldn't do it less than 3 months so I had to talk them into it and always told them talk to the Dr. As if 6 weeks was Dr's idea!
I can't believe I forgot about having injections. It's like a lot of things I knew were suddenly wiped from my memory.
I'm not feeling sure about so many things but I think because I am on my own now it's easier for 'others' to stick to their own agenda as I'm not thinking properly and noone around to remind me!
Yes I'd forgot I was told I needed B12 as a child. It's weird getting reverse dementia! You suddenly remember things. I was given one jab too, by an ENT specialist, but my GP didn't follow through, and I'd forgotten that. I have real problems with people's names. It may take a fight but the NICE guidelines, your doctors should follow have changed recently. To be honest with you I like others here buy my own supplies. I've not had a clear diagnosis and was only offered every 8 weeks, which is better than many. I gave up trying to argue with my doctors. I have had various medical interventions over the years. I just find it far easier taking control.
Hi, you might find this interesting - a small study, but shows that people with ME/CFS/Fibro did better with weekly B12 or more often, rather than less frequent pmc.ncbi.nlm.nih.gov/articl...
I get weekly, from NHS, probably due to this - the consultant who suggested weekly also runs an ME clinic and I have a fibro diagnosis.
Oh wow! That sounds wonderful!ME clinic that was here unfortunately closed 10 years ago as consultant retired and noone to take his place
I had some great support for 5 or so years after I was diagnosed. I guess all good things come to an end.
Dr's were open to try everything he suggested but it all stopped when he was no longer there like I'd suddenly recovered! They were always resistant over B12 and more so when clinic closed. I felt lucky to talk them into 6 weekly! As my Dad was still on 2 months at the time.
I will try to take this to the surgery but I don't think they read a.l the ME leaflets I took when first diagnosed
• in reply to
I can't open the website as I guess it's USA based but I will be getting more leaflets from MEA to take to surgery. It has been 10 years since I routinely took every study and evidence based paper in to them. Forgotten I used to do that!
I think this is the study from Sweden that MEA have referred to? but they don't actually have a copy on their website so this is great.
I think Dr Shepard who is the contributor to their papers does not believe that B12 deficiency and ME can coexist in one individual. Which is disappointing. His take is you should be checked for PA and only if you don't have PA or another disease then a diagnosis of ME can be used. He seems to think you cant have low levels of B12 and have ME or that's how I read him.
I don't agree with his views. As I can't think that I have had undiagnosed PA since I was 2 years old as I don't think I would be still here! But i know it's very common for ME to go undiagnosed. And I know I have low B12 as wouldn't have had a GP panic about my low levels and give an emergency appointment for injection!
This paper is very encouraging so thank you for sharing
Hi, interesting, thank you. I've just been looking at the MEA leaflet and am pleased that it at least briefly mentions functional deficiency but am otherwise unimpressed. Of course other conditions including PA should be looked for, but PA is only one form of B12 deficiency and also is not easy to diagnose. The serum level of B12 can be far from helpful and it is daft to me to suggest that you cannot have both ME and B12 deficiency, or that B12 cannot be a useful treatment particularly for the mitochondrial disfunction that deficiency causes. It will not be the only 'cause' but I know that B12 can improve quality of life and functionality in ME, CFA and Fibro, at least for some. Perfectly possible to have reduced B12/folate absorption (especially in families with genetic polymorphisms) over many years causing/contributing to symptoms, the effect of which will compound over time. Cheers
I felt like my life was draining away too when I had too little B12. It sounds like you have pernicious anemia like the rest of us here. You need to get regular injections for the rest of your life. To start, every other day at the minimum until all your symptoms are gone and you have your energy back. Low B12 can cause dementia-like symptoms. So that should improve too. Then find a schedule so that your symptoms do not come back. The doctors should not have allowed you to spend those big blocks of time without B12.
To be honest I don't think Dr's knew what was going on with me. I don't think they realised I wasn't having B12 as the computers were still flagging up date for next injection. HCA said all it said was I was due for next injection and that I was overdue? Something like that?It wasn't until I said I wasn't sure about it and last time I'd mentioned it to a Dr I was told I didn't need as bloods were fine. (and I really didn't know that conversation had been in 2021! Not until she checked it all out). I really spent too much time in her office for just a blood test but I seriously couldn't get to my feet and was waiting for energy to regroup! I think she realised I was struggling and not sitting there for an idle chat!
But it felt to me like it was last week I was told bloods were fine and I was worried that Dr wouldn't be happy if I didn't have them checked again as HCA was ready to do the injection there and then, that's why she wanted to speak to original Dr. And I guess that's when we all got on same page! Although I'd lost the whole book for a while there!
So I can't blame the Dr's. It's more the computer system not telling anyone that I was still having appointments and not having injections! It's the system they have where you speak to a different Dr about each symptoms and if they don't have time to read about previous appointments I guess none of them get a complete picture. I remember one Dr. Saying, oh you do have a lot going on so I guess he read this last years problems. I want the old system back where you just had one GP overlooking everything for you as this new way doesn't work for me
Sorry going on a bit there. I'm explaining it to myself as much as to anyone else so I can understand what I did wrong and what I need to do next if i have the energy!
It would also be good to take responsibility for your own health. Now you know you need lifetime B12, make sure you get it. Either from your doctors. Or self-inject like many other people do. Once you start supplementing with B12, the guidelines say to not test the B12. Too many people with PA get the blood levels retested then doctors who do not understand B12 try to tell them they do not need an injection. I hope you can find one family doctor. It really helps a lot to have someone who knows your history.
Seriously it doesn't work like that here. If you can even speak to a Dr at your surgery you are extremely lucky but they won't know anything about you. In last few weeks Dr's phone calls have been 1 Dr thinking I'm having a stroke, another Dr thinking I'm having a heart attack and both of those have called an ambulance who don't know what to do when they get to me. Last Dr thought I had renal colic and asked me to go to a and e. My .local hospital if you go to a and e you have a 24 hour wait to be told what you already know, they can't he,p you! So I decline. Ambulance staff if they are called to me say I don't need hospital. Treatment, I need a Dr. Yes I know this. But where do I find a Dr. who understands that I need treatment? When they are all fixated on heart attacks and strokes? I was so extremely lucky that the HCA recognised I was struggling.ing and had the nouse to put everything together and get to Dr who gave me injections in first place to try to get injections back. God bless her! If she hadn't done that for me I would still be in same place. I know NHS is very slow but if I hold on I will get an injection at end of week. I was dxd with Cataracts in 2019 but guess what pandemic hit! So I managed to get one appointment in April 2020 w here they told me both eyes needed operating on by end of year. I waited until end of 2021 as I knew they were struggling only to be told by my GP that my notes had been lost so I woul have to start again! By 2022 my eyesight was so bad I couldn't recognise my own Dad. He died that year 2023 I could hardly see and everything was very dark. I struggled through that year and most of last year. I couldn't go out as I couldn't see. I was extremely lucky that when I finally got an optician appointment I was sent straight to a private clinic as NHS patient as I would still be waiting another 2 years just to have Cataracts sorted with NHS. Although I had eyes done in December of last year my eyesight is still not good but at least I'm not still in the dark!
Maybe it's different for you and you can just stroll into a surgery and see a Dr? Maybe the pandemic didn't affect your country? If not, you don't know how lucky you are. NHS is slowly getting back on track but if you are not dying then you will just be on a waiting list as I am for several different problems. I am so grateful for that HCA who has got me into the position of having a B12 injection at end of this week!
I paid for private cataract surgery, not because I had cataracts but because I could not see well and it was impacting skiing and playing ice hockey, my passions. About 20% of people in BC have no family doctor. I am very lucky because I have an excellent doctor. During the pandemic, doctors started using phone appointments which I really like for the times I don't need to see the doctor for him to figure out what is wrong. Many people on this forum are getting B12 from Germany and self-injecting. There is lots of info on this forum on how to do that if you get fed up with the health care system. I hope you feel better soon! You probably should be getting B12 every other day until your symptoms are gone.
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if there are people who could possibly do it then we probably would all be doing it!
Newbie here with aching limbs
GREAT RESULTS FOR 3 DAYS, THEN NOTHING
Please help 🙏
Help 😲
Frustration of the UK system
