Just wanted to tell you how appreciative I am for the time and effort you all put educating people about B12 deficiency.
My story is similar to a lot of yours. I’ve been feeling tired for as long as I can remember, even as a little girl. But after having my two kids in the last 7 years it felt like a whole different beast… Then came the migraines, dizziness, vision blurring, mouth sores, chilblains, all things I chalked up to being an exhausted mom of little ones. Three years ago , I told my GP I felt off, went through the symptoms, and she agreed to do some blood work. Blood count, iron, vitamin D were normal, but B12 was 150. You’d think this would have been the start of an epic “let’s figure this out” saga, but no, it was left at that, nothing was said of the results. In retrospect, I guess I should consider myself lucky that B12 was tested at all. Fast forward 3 years, symptoms didn’t improve, shockingly. According to my GP, it’s all just the impending menopause, “honey” (mind you I’m only 42). But she agrees to get me retested. My B12 is now 56… rest of the bloodwork is normal. IF test is negative. So she first tells me that since I am negative for IF, I don’t have PA, and that over the counter vitamins will work just fine. Thanks to all of you, I now know better. I’ve insisted to get injections and she agreed to 3 monthly injections. That’s it. I can’t help but feel like my GP is not taking any of it seriously. She should have treated me 3 years ago, she should be treating me correctly for potential PA now, and she should try to do more testing to figure out if I really do have PA. By the way, she knows I am not a vegan, eat plenty of meat & cheese, and have been taking multivitamins for years with 250% B12. I am really considering self injecting now, even if I don’t have major neurological symptoms. Just not worth my time arguing with people who are professionals in their field…
So again, thank you from the bottom of my heart, I can’t even think of how bad things could have turned out.
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Thank you Sallyannl. Yes, it took me three years to realize that, but now that I have educated myself more on B12, I am appalled by her lack of urgency.I had my first injection a couple weeks ago, and had to do it to myself after convincing the pharmacy I could do it (turns out I couldn’t, my husband had to do it). The nurses were so booked they wanted me to wait a month to get a shot. I felt even more tired for a couple days. I have also switched from normal oral B12 to sublingual daily, and a couple hours after taking it it hits me like a ton of brick, so so sleepy. I don’t mind though, I take it as s sign it must be working.
Thanks for replying to my book-long post, and best wishes to you as well.
Yes my partner had his first injection before xmas, with in one and half hours he was asleep, and slept the best part of three days. Well done husband for stepping in and giving you the injection.
That's a good idea! The injection gave me insomnia the first night, despite feeling tired, so I was reluctant to take b12 supplements before bed. But sofar the sublingual doesn't seem to affect my sleep at night, so I might just do that. I was so impressed by my husband honestly. If the tables were reversed it would have been very hard for me to jab him. I jokingly teased him saying he enjoyed it way too much, but the truth is it gave him nightmares, poor guy. I hope your husband is feeling better!
Hi, that is strange in that my partner had insomnia before the injections, afterwards he slept although he said he hadn't and that he felt exhausted, so I took a video of him curled up on the sofa fast asleep !
When it comes to injecting your husband probably thought that he would do anything to get you better, not even thinking about how the injection might hurt. when I injected the other half for the first time my heart was pounding. I inject myself so I should be pretty much use to it, but now I have done it several times (needs must !)
I think my insomnia could have just been all the excitement from trying to convince my brain to jab myself for more than an hour, then trying to convince my husband to go for it, lol. I have a very active brain at night, and have been kept up by less than that before.
Thank you for telling us your shocking story . Something similar happened to me , but I was lucky enough to have tested positive to intrinsic Factor antibodies. ( I was also sent on my way after testing coincidentally with the same 150 as you. Idid not know this result , as I did not know that one could get a print out of blood results — Strangely , doctors never volunteer that information , do they? I only found this out recently ) So I continued to decline … Eventually went to see a private GP and was diagnosed with P.A. . Look I won’t bore you further . But it’s been an awful story . Doctors don’t want to know about P.A. Surgeries are rewarded for diagnosing certain conditions and illnesses . BUT NOT FOR P.A. YES finding the PAS and this forum has been life-changing . I now self inject weekly and keep well . Its cheap and easy . I’ll send you info about Self -injecting.
Thank you Wedgwood, and I am so sorry you have been through that as well. I have always been the kind that blindly trusts doctors, but this has been eye opening. Unfortunately you have to do your own research and trust your instincts… For me I actually saw the numbers 3 years ago, but silly me just assumed if the doctor wasn’t concerned then she must know better. I remember reading some of your posts over the last month and they always were very insightful and instructive. Thank you!!!
I am not medically trained but if your diet is B12 rich then any B12 deficiency is probably more likely to be due to an absorption issue in gut.
High alcohol consumption has been associated with low B12 levels in some studies.
I would expect your GP to at least test you for PA (Pernicious Anaemia) and Coeliac disease, both auto immune conditions that affect the gut. There are other conditions besides these two that can affect B12 absorption.
If PA is suspected or diagnosed, worth joining PAS who can offer support and pass on useful info.
Membership of PAS is separate to membership of this forum.
You do not need a confirmed diagnosis of PA to join PAS.
Any possibility of internal parasites such as fish tapeworm?
Have you ever eaten raw or uncooked fish eg in sushi, smoked salmon etc. Have you lived or stayed in an area where internal parasites are common?
One clue that there may be an internal parasite is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found with full blood count (FBC) test results.
Search online for "parasites B12 deficiency" for more info.
Any exposure to nitrous oxide?
Nitrous oxide is sometimes used as part of pain relief/anaesthesia in operations/labour. Nitrous oxide inactivates B12 in the body.
It's in gas and air mix. I was never told at any time during my pregnancies that nitrous oxide inactivates B12 in the body. NHS page on pain relief in labour does not mention this.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages)
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
Local B12 deficiency guidelines in UK
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
If you want to know why I suggest getting hold of local B12 deficiency guidelines for your area of UK, see blog post below.
Sometimes the route to better treatment/diagnosis is through seeing a specialist.
Seeing a specialist is no guarantee of better treatment or getting a diagnosis as there are some specialists who lack understanding of B12 deficiency.
I saw several neurologists and all apart from one missed the obvious B12 deficiency. Even the one who thought it might be a possibility was not able to give a firm diagnosis.
If you have neuro symptoms, I would expect you to be referred to a neurologist.
If neuro symptoms present, I would also expect you to be referred to a haematologist. If GP reluctant to refer then worth trying to get GP to write to a local haematologist asking for advice on how to treat you.
If gut symptoms present, have you been referred to a gastro enterologist?
NICE guidelines - when to refer B12 deficient patient to a haematologist and gastro enterologist
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, more B12 books, more B12 websites, more B12 articles and a few hints on dealing with unhelpful GPs.
You could mention in any letter or conversation with GP and practice manager that B12 deficiency may lead to permanent spinal damage if treatment is denied, delayed or inadequate. This is called SACD, sub acute combined degeneration of the spinal cord.
I am not saying you have SACD, I am not medically trained.
I am saying that your GP should be aware that SACD is a potential consequence of B12 deficiency.
Maybe send them PAS info on SACD. See SACD links in my other reply.
Mentioning it may be enough to nudge them into taking more notice of you. There is also a chance that it may irritate them as well.
For many years my children did not have a mother who functioned properly and I have struggled with guilt ever since.
If your GP needs educating, maybe think about the following ....
1) point them to PAS webpage for health professionals
"I have always been the kind that blindly trusts doctors"
So was I but not anymore after the experiences I had, which included being shouted at and pressure being put on me to leave one GP surgery. They didn't like the fact I was costing them money and that I was very persistent.
I learnt not to accept being told my results were normal/no action unless I had checked for myself with a copy or on screen.
Best advice I ever got was to always get a copy of or access to all my test results.
Can be very interesting to see what GPs have written in medical records.
GPs have to correct factual mistakes eg wrong name, wrong date of birth. They do not have to change a diagnosis just because a patient disagrees with it. Patients can ask for a note to be included in their records if they do not agree with something GP has recorded.
I was diagnosed with all sorts of things eg depression, psychosomatic symptoms, functional neurological disorder, hypochondria, ME/CFS/Fibromyalgia before finally working out what was wrong with me. Sadly it's not uncommon for people with b12 deficiency to collect labels like this.
Strange how most of my symptoms improved or disappeared when I finally got treatment.
Apologies for so much info but your story struck a chord with me.
There is more I could add so carry on asking questions.
If you want to update the forum on your story it is sometimes better to start a new thread as responses on older threads sometimes get missed.
Wow Sleepybunny, I am so so thankful for your answer! So much good information in there, it is going to take me a while to digest all of it. All I want to do lately is read about it and figure out what's going on. I hear you concerning feeling guilty about your children. I tend to be so short with them and lack patience when I feel like I have barely enough energy for running an household and not losing my job. I really hate that instead of being about them I make it about me, and hear their little voices say "Oh no, shhh, don't bother Mommy, Mommy is tired again...".
Btw, I double checked after your comment, and my B12 level is in fact 69.0 ng/L and not 56 like I thought. So I guess I am much better of than I thought, hahaha. And I guess I might also have more brain fog than I thought...
I am sorry you had to go through so many misdiagnoses. Even with a clear test result showing deficiency, I learnt not to talk about it too much with people other than my immediate family, I feel like I get the "glazing over politely" look of "oh no, is she making all that up?". It's unfortunate, and I don't quite get why people/doctors in general are reticent to accept it for what it is. Maybe because it is just too relatable for comfort? Most of us have family history of dementia or other serious side effects that could have been due to B12...
I am so sorry to read your story and how you, like many of us have been treated. I am really pleased your husband gave you your injection.
Following on from Sleepybunny’s post. I too have diagnoses of fibromyalgia, functional neurological disorder, hypochondria, health anxiety, medically unexplained symptoms and a MH diagnosis. Oh and the best one, my GP told me after coeliac disease was found, you have IBS.
Ok, what date was that established, what tests were performed, can you name the clinician who diagnosed me with this umbrella term and their specialty. Oh you can’t because that’s inaccurate data, my data.
Now, how would you like it if you woke up and had 12 points on your driving licence - human error. You can’t drive to work, do the school run, go food shopping or visit poor elderly aunt Doris.
Nope I have coeliac disease, don’t you remember, symptoms since aged 19, undiagnosed for a whooping 28 years !! So, how long have I been B12 deficient for then please ?
We do have to take matters into our hands. I certainly felt dreadful (fatigue, nerves burning after each injection and visible neurological symptoms
Yesterday, I counted how many medical schools are in the U.K. and if I donated a copy of a particular text on vitamin B12 deficiency it would only equate to £2,000 but would it just collect dust in the library. Who knows ?
My sarcastic nature is played down with blank expressions when engaging with health professionals. However, I have one tattoo on the side of one of fingers. It is practically hidden but denotes illness. The particular finger I had graffiti’d signifies my utter disdain 🙊
Oh no, I am so sorry! I can nearly understand doctors misdiagnosing, it is super frustrating and unacceptable but they are human... what kills me is how many people are labelled as hypochondriac. That's just so insulting... as if people could make up symptoms that severe. It drives me nuts. Unfortunately, I am guessing you would be right, if you were to gift every doctor a book about b12 deficiency, most of them would just think you're part of a cult. It would probably take at the very least a doctor to change their minds (maybe, if they are particularly open minded). I hope you are finding some relief in the b12 shots. We are so lucky to have finally got a diagnosis and have access to ways to cure ourselves and not rely on prescriptions...
We are definitely very lucky to be able to self treat and to have this wonderful forum and PA society.
Yes, I was very poorly and to look at me you could see I had neurological problems, very pronounced tremors and my walk looked like I was body popping.
The book thing well, it depends who you know, what you know and a couple of others bits and bobs.
The main thing is progress and supporting each other. 😁
Your case is so similar to mine, although I haven't had children (infertility probably due to high homocysteine due to the B12d).
Did you have gas and air during child birth? This may have made your levels worse still.
It's just shocking how little care and importance is put on something so critical, isn't it. And even when told, they don't scrabble to amend their lack of knowledge.
All I can suggest is that you Self Inject like so many of us do. It's much easier than the idea of it suggests but if your husband can do them for you until you feel able to then great!
Keep up your broad spectrum vitamin and mineral supplement (supermarket A-Z ones are as good as any, if not better than the branded ones) plus additional folate (folic acid) and try to increase your dietary intake of potassium (especially as the jabs make you sleepy), magnesium, iron and vitamin D. I know they were normal before but if you can get them checked again it will be well worth it.
Other than that, stick with us, keep sharing your experiences and and ask any questions you want to - it all helps others who, like you, read through the forum! It's great to have you here.
With enough B12 and supporting supplements you should be able to look forward to a much better life and really being able to enjoy your family!
PS having done your research so thoroughly I'm sure you know already but don't be put off by its not being an overnight cure. At best it takes months to reverse the damage you will have sustained but the good news is that you will continue to improve gradually for years to come.
If you ever get so you feel your improvement has slowed and should be better, don't give up because there is quite a lot of "fine tuning" that you can do to get things going well again.
If you have been deficient for a long time there's a good chance, as your nerves "wake up", you will become aware of problems that you didn't even know you had - but try to see this as part of the recovery process and don't be disheartened by them. Just see the potential for getting another bit of you and your system back and with time it will get better.
Thank you deniseinmilden, I really appreciate all your advice! And I am so very sorry to hear you couldn't conceive. That is one of the deepest pain and hardest thing to talk about (not the same by a mile, but I had a miscarriage a while ago). And you are so right, I started supplementing with sublingual only 10 days ago (and had only one injection), but today is the first day I woke up feeling like a million bucks. I couldn't believe it, I had energy, was feeling happy, my mind was clear and focused, I could go up the stairs without feeling out of breath... It lasted 1/2 the day, but it was shocking. I forgot what it felt like to be normal I guess, and I did not realize that my mind felt foggy, like I'm just a tad too slow for comfort, it just came so insidiously. I realize that magical 1/2 day could be a fluke, but it would sure make all the shots and potentially slow recovery worth it.After reading your question about getting gas during childbirth, it got me thinking... I didn't, but I did get a prescription of prednisone (steroids) a year ago for a weird rash doctors couldn't explain. And after looking it up it can deplete b12 levels... The other thing I found out, is that there was another test result my doctor missed that was out of range. A test looking for kidney disease, called GFR came out at 65 mL/min/SA instead of 78-116. According to good old google it is indicative of potential kidney disease and needs to be monitored. I am now convinced it is related, as malfunctioning kidneys absorb poorly and contribute to vitamins deficiency. Interestingly, it is said that some forms of synthetic B12 are safer than others for people with kidney problems. Apparently cyanocobalamin is totally fine for people with healthy kidneys, but potentially toxic in large doses for people with malfunctioning kidneys. The sources I read recommended taking methylcobalamin, hydoxocobalamin or adenosylcobalamin instead... Sorry, I am ranting, but maybe this info can help someone reading this, or convince them to check their kidneys!
I don't know how you're still walking....you deserve a medal.
I wonder if you have grounds for a complaint although when GPs think a complaint is a possibility they become very protective of each other and it can put a lot of strain on GP/patient relationship.
I would urge you to think about writing a letter to GP and practice manager.
See Point 1 in the letter writing link in my other reply.
You have neuro symptoms eg migraine, brain fog,
Do you have any other neuro symptoms?
(See links to symptoms lists in my other reply as well as list below)
tingling
numbness
pins and needles
electric shock sensations
burning sensations
insect crawling sensation (medical term - formication)
tinnitus (noises in the ear)
muscle twitches
muscle fasciculations (ripple type movements of muscles - looks like something is wriggling under the skin)
flickering eyelids
restless legs syndrome RLS
periodic limb movements
vertigo
clumsiness
dropping things,
bumping into things
strange gait (unusual way of walking)
word finding problems (medical term - nominal aphasia)
balance issues
tremors
proprioception problems (problems with awareness of body in space)
I'll say a bit more about proprioception (also known as position sense).
Do you have balance issues when it's dark, your eyes are closed or your view of surroundings is blocked? If yes, that is suggestive of possible proprioception problems.
I used to fall off the pavement when someone walked directly towards me.
If you reach for an item, do you misjudge where it is?
It became a family joke in my house about the amount of crockery I smashed.
If you see a neurologist, make sure they check your proprioception sense.
Two neurological tests that can help to diagnose proprioception issues.
These tests should only be carried out by a doctor at medical premises due to the risk of injury from loss of balance.
Don't do them at home.
1) Romberg test
2) Walking heel to toe with in a straight line with eyes closed
A person with proprioception problems may be able to walk in a straight line, heel to toe, with their eyes open but be incapable of walking in a straight line if their eyes are closed.
if neurologist does not do any tests where patient has their eyes closed, may be worth asking if proprioception has been tested.
Search online for "proprioception B12 deficiency" for more info.
Some articles may have details that could be upsetting.
More about these tests and other neuro tests on Youtube.
Kidney Issues
If you have kidney issues, I don't know if this will affect the way your B12 deficiency is treated, I'm not medically trained.
You could ask GPs to look in their BNF book Chapter 9 Section 1.2 which says that patients with "neurological involvement", meaning they have neuro symptoms, should have the following pattern of treatment
A B12 loading injection every other day for as long as symptoms continue to get better then a maintenance B12 injection every 2 months.
There is no set time limit as to how long these every other day loading jabs can continue for.
It could be weeks or even months of them. If improvement continues so should the every other day jabs.
Some forum members in UK have found that their GPs were unaware that there was a different pattern for those with neuro symptoms so you may have to point it out to them.
How many loading injections is GP giving you?
If it's six loading injections over two weeks followed by an injection every 3 months then GP has put you on a treatment pattern for those without neuro symptoms.
Not giving a patient the pattern for those with "neurological involvement" could increase the risk of developing permanent neuro symptoms
I suggest you keep a daily symptoms diary which other forum members have mentioned. You could track changes in symptoms over time and if and when any treatment is received. It could be useful evidence of improvement or deterioration in symptoms to show GP or any specialist.
A symptoms diary could help your doctor to work out how often you need injections.
Feeling worse
Many forum members report their symptoms worsening when they first start treatment. I thought of it as the nerves waking up after being starved of B12.
Some people can experience a drop in potassium (hypokalaemia) when they start treatment.
Your GP may want to check your potassium levels.
Self injection
Some GPs do not cope well when a patient tells them they are self injecting. Some have had their NHS injection stopped.
"year ago for a weird rash doctors couldn't explain. "
Coeliac disease can sometimes present with a skin reaction rather than gut issues.
Look up "dermatitis herpetiformis". More info on Coeliac UK website.
Take pictures of any strange rashes as they could be useful.
Did GPs run any screening tests for auto immune conditions as some of these can present with skin rashes eg lupus type conditions
Is there a family history of auto immune conditions?
I'm assuming your GP has not tested you for coeliac disease yet.
You may want to point out that NICE guidelines Coeliac disease suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.
Your B12 deficiency has not been explained yet so therefore my understanding is that you should be tested for coeliac.
NICE suggests two first line tests for coeliac
1) tTG IgA which looks for antibodies to gluten
2) Total IgA which checks for patients with IgA deficiency.
A patient with coeliac disease may get a negative result in tTG IgA test if
1) they have IgA deficiency.
There are alternative coeliac tests for patients with IgA deficiency
2) they were not eating enough gluten prior to blood being tested
NICE guidelines suggest that patients with suspected coeliac disease should eat plenty of gluten in more than one meal per day for several weeks before blood tested.
Your story is so familiar. When I asked to be treated in line with the NICE guidance because I had neurological symptoms I was told by my GP I “was overly impatient”.By this point I couldn’t walk upright, was incontinent, pins and needles even under scalp etc etc. I had help from people here and have now been SI.
We constantly hear storys like yours repeated all the time I want to scream at their ruddy ignorance of such a simple illness to treat if detected early enough. Surely it makes sence to include testing B12 routinely.
My story is very much the same and I am so tired of battling Drs who simply are not listening. There are over 27 and a half thousand of us on site which shows how deperately the treatment and understanding of the condition needs to be changed.
I have batted numerous information to both my Gp and consultants. I have even tried to guide them to Pas to try an educate them with regard treatment all to no avail. I lives have been on hold due to their ignorance and the damage that ignorance has left us with is blighting our lives.
At least we have each other on here for support and a moan when need be,
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Thank you PA!
Hi new to the forum. Strange shivering/tingling sensation.
Thank you
