This is a long story so buckle yourselves in, but I thought I'd put this out there as I've been feeling very down and stressed out lately about my B12. I'm 21 years old and looking back, I can see I had noticeable symptoms from when I was about 17. I remember feeling constantly tired (I would go to sleep at 6 in the evening sometimes) but just put it down to A-Levels draining me. Then i noticed I kept feeling like I couldn't catch my breath. Like I wasn't taking in enough oxygen and kept having to take a really deep breathe to feel satisfied (I still experience this now). I did got to the Doctor because the breathlessness was worrying me and she put it down to A-Level anxiety but gave me a blood test anyway and said my folate was low so I took some supplements for that. (This was before I became a Vegetarian).
I first got diagnosed when I was 19 nearly 20 (I think. My memory isn't great). I was experiencing nearly constant headaches and my GP couldn't find an explanation and kept putting it down to anxiety (which I do have quite badly). This went on for probably about 6 months, I even had an MRI of my brain to check for tumors etc. After a while the headaches weren't as frequent but they were still regular. It also felt like the nerves in the back of my head and neck were constantly tingling. Almost like someone was tickling the inside of me. I'd then noticed that my left hand was going numb multiple times a day and would also tingle. It felt like I had a glove on. Then my left leg began to act strangely. Whenever I'd walk to or from work, for example, it would feel like there was an elastic band around my calf muscle. My leg would feel numb and I struggled to walk properly on it, which wasn't great since I have a bad knee and a bad back due to old injuries. I became dizzy near constantly and my breathlessness or "the sighs" got even worse. My ears started ringing and I would go partially deaf in one for about 30 seconds before it stopped. I went to the Doctors multiple times and she consistently refuted anything was wrong and that it was my anxiety. She gave me anti depressants and anti anxiety medication which I had horrible side effects from and so stopped taking. She wouldn't seem to listen to me when I said that, yes, I have had anxiety all my life but I've always had it under control because I'm so used to it (I had my first panic attack when I was probably about 9). It was my physical symptoms which had made me more anxious because I had no idea what was happening to me. I was becoming very depressed. I felt like no one was listening to me and was saying it was all in my head but I know my body and I know when something isn't right. In the end, the Doctor finally relented and gave me a full blood test. I had an appointment booked for about a week later to discuss the results, which is when she informed me that I had too few red blood cells and that they were misshaped and so they looked into it more and found I had a B12 deficiency and that my thyroid was borderline low (no one has ever followed up on that). I was so relieved because it proved what I knew all along - that something wasn't right. I had the loading shots and was told to come back and get tested in 3 months time. I noticed instant improvement after a few weeks of having the injections. My headaches stopped, as did my dizziness (mostly), and my hand and leg had stopped going numb and tingling. I had another blood test after 3 months and was expecting my levels to be low again as some of my symptoms had returned. However, they said my levels were okay and so I went on my way. Thats when things got worse again. Probably a few weeks after that I got the worse dizziness and vertigo of my life. It was all day every day. It felt like I was constantly going up and down in a lift or was on a boat. I work as a Customer Assistant at a cinema and ended up having to call in sick to work all the time because I just couldn't function with it. The tingling in the back of my neck was so bad again that I kept almost crying from frustration when I did manage to work and I was constantly fidgeting to try and take my mind off it, which didn't help my dizziness at all. I was stubborn thought and I didn't trust Doctors anymore since I felt like they never listened to me. My Mum made me go in the end because I was deteriorating and becoming depressed again. I saw a different Doctor (the only one I like at the Surgery now) and he agreed with me that it could definitely be my B12 levels again. I had a blood test and within a day or two they rang me and said that I was going to be having injections every 3 months from now on as my levels were low again. I had the injection and within weeks my dizziness stopped. It felt like a miracle. So I now have an injection every 3 months. However, my symptoms still return within 2 months (dizziness, breathlessness, tingling hands and neck, palpitations) and waiting another month for my B12 feels like a lifetime. No one has actually sat me down and said I have Pernicious Anaemia, I'm just guessing since I now have this prescription for life and its injected into me every 3 months as it says to do on the NHS website.
The thing that is making me upset right now is the fact that every time I go to the nurse for my injection, they always say without fail "are you a vegetarian?" and when I say yes they make it clear that they think that's why I need the B12. It makes me feel guilty. As if by not eating meat that I'm making myself feel this unwell. So my question is, is it possible that by being a veggie, I make my B12 levels this low so consistently? I thought your body was supposed to store it for years so why did it go down so low again 6 months after my 5 loading shots? Is it Pernicious Anaemia or is it because of my diet? My Nan is a recently retired Nurse and she thought from the beginning that it was PA, especially since my great great Gran apparently had it very badly as well. I am going to make a Doctors appointment to discuss this with him but I just hate going so much. To be honest, it often feels like I'm treated like I'm a "hysterical woman".
Thanks for reading all of that if you've made it this far and thanks in advance if you have an answer to my question. Hope you are all doing alright and it makes me feel not as alone knowing there are others like me out there.
- Millie
P.S. Does anyone else's symptoms get worse when they're due and on their period? I have PMS now and feel awful.
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Milliemaria42
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Oh my goodness Milliemaria42 . How often do we hear awful stories like yours? Much too often . I e just relied to a member called Murfle , so read through that . It’s infotunate that I haven’t much time to reply in detail . I’m in Thailandvatbthe moment helping out on a friends Organic Farm , and I have to get out of bed and go somewhere . But I wanted to respond to you immediately. You have come to the right place . You have friends here who will
Help you . Yours is a story we hear all too often . If you are a vegetarian who eats eggs . cheese and drinks cows milk you should be getting sufficient B12 . Otherwise tablets of B12 would suffice .As you are being given B12 injections every 3 months , PA must be suspected . Especially since your grandmother had P.A. All you need are more regular injections . I have to go now , but you will get advice from some lovely people on this forum . Don’t despair ! I will be off the radar for a couple of days . Sorry but I must rush off . You will get help and advice . Very best wishes .
Thank you for replying! Just knowing other people understand and care means a lot. I am going to book and appointment to discuss it further with my Doctor as I need to know whats going on really. Hope you're having a great time in Thailand!
Hi Milliemaria42 as wedgewood (in Thailand) says we often hear stories similar to yours.
For a normal healthy person the natural sources of Vitamin B12 are in meat, fish, seafood, eggs and dairy produce so any diet that restricts intake of these will mean that, without supplementation, you will become B12 deficient.
We normally have a reserve of several years worth Vitamin B12 stored in the liver and like a battery it needs to be "re-charged" or "topped up" on a regular basis and this is not a criticism of your personal choice, a vegetarian (and especially a vegan) diet will cause a deficiency.
However, given that there is a history of P.A. in your family I think you should mention this and ask your doctor to test you for intrinsic Factor Antibodies (I.F.A).
Sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.
Hi, thanks for taking the time to reply. I am going to book an appointment to discuss it further with my Doctor and will bring up the IFA test. Hopefully he'll listen to my concerns and I can find out more about what he thinks is causing it. If it is diet related would they prescribe me supplement tablets instead of injections? Hope you are well and thanks again!
Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:
Weakness and fatigue
Light-headedness and dizziness
Palpitations and rapid heartbeat
Shortness of breath
A sore tongue that has a red, beefy appearance
Nausea or poor appetite
Weight loss
Diarrhoea
Yellowish tinge to the skin and eyes
If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:
Numbness and tingling in the hands and feet
Difficulty walking
Muscle weakness
Irritability
Memory loss
Dementia
Make a list of your symptoms and if possible take someone with you who can "validate" them making it more difficult for your doctor to "pooh pooh" them.
If you don't have a problem with your digestion in absorbing nutrients from food you may well be able to manage on B12 tablets or sprays (which I personally use between times) and not need injections. Some breakfast cereals are now fortified with B12 but I don't know how much of the RDA is included and there's always "Marmite"
However, if you do have P.A. which totally prevents absorption via the stomach then injections will be for life.
Please don't worry Milliemaria42 as there is "life after P.A." and I am still "clivealive" aged 77
Thanks for your kind wishes and you take care now.
Forgot to mention that I was tested for Vitamin D deficiency as well because my Doctor kept saying how pale I am and it came back as being extremely low so I take supplements for that everyday. I read somewhere that that can cause difficulties in your body absorbing B12 as well. Anyone know if that's accurate?
You'd have to be vegetarian, and have a pretty poor vegetarian diet, fir a long time to develop B12 deficiency so quickly because of that. I think the most likely explanation is that you gave P.A. and as others have said you can test negative even when you are not.
Your dr was at fault on several counts : insufficient loading doses and then blood testing after your first injections. Even a first year medical student should see that that is a pointless exercise.
If I were you I would print out a symptoms checklist of PA symptoms, tick all the ones you have.
Print out the correct protocol for B12 loading doses.
Request from this site the doctors pack.
Take it all to the Practice Manager and suggest the drs treat patients correctly before they harm any more.
I'm afraid the ignorance of these GPs really annoys me.
You could try self injecting between your 3 monthly injections. This will keep your B12 topped up. And there's plenty of advice for a vegetarian duet online that will make sure you eat well.
Yes, being vegetarian is a good way to become deficient in B12.
Yes, eggs and dairy contain B12 - but not a lot. To get 2.4 mcg a day (the amount recommended by the HIH) you would need to consume 6 eggs a day - every day. Or a 2-egg cheese omelette, washed down with a glass of milk - every day.
If you had been deficient for many years then your body wouldn't have built up any stores. A short burst of supplementation probably isn't going to build up those years of spare B12 (we know that most of an injection gets eliminated in the urine).
I would do two things -
1. Ask your doctor to switch to injections every 8 weeks. The guidelines (in the British National Formulary - the doc will have an online copy) have changed recently. Ask them to have a look.
2. Start taking oral B12. You don't need super-high doses, those found in supermarket multi-B vitamins will have enough tesco.com/groceries/en-GB/p...
Yes I think the same. Try and keep up good food. Take supplements including b12 to see of you can absorb and build up stores. And get injections every 2 months as suggested. Then see what your symptoms are.
I've no idea how long it takes to build up stores. I tried the regime of loading dose then to have injections every 2 months. It was pointed out to me on here I'd actually missed a stage. Symptoms never really went properly then started coming back despite good food and supplements. Symptoms are only improving by going back to the stage I missed. Every other day until further improvement. As you are a vegetarian you may be able to top up with a good supplement. It will take a while . It's hard to know what we can absorb . So hopefully you will start feeling better soon and get on a regime that suits you. I'm not there either woth a regime or functioning at an acceotabke level. The headaches were the first things to subside .....relief.
Look for good signs. Take one day at a time. Everything worse with pms! !!
I have been a vegetarian for almost 40 years. That still doesn't make my B12 deficiency my fault.
I have yet to see any research where there is a transparent clarification made between vegetarians and vegans (often "strict vegetarian" is used, which is not a denomination made commonly and so has little descriptive value). Since each person's dietary history is being categorised, clarity is very important. Yes, it may well be true that a long-term "vegetarian diet" (which is a bit like saying "carnivorous diet"- equally meaningless) may now be discerned to have had a detrimental effect on levels of B12, but should this not be easily rectifiable, if only dietary?
In which case, why do I still need to self-inject every other day after well over a year? I am surely getting way more B12 than the strictest of carnivores ! And why doesn't the spray work at all for me?
Despite the frequency of dose, I am containing my symptoms, rather than recovering.
I also have folate, ferritin, and vitamin D problems: are they also my fault ? Wonder if anyone could explain how a vegetarian even becomes short of folate ?
This is exactly what I’ve been thinking. I just didn’t understand why my levels would keep dropping so quickly despite having injections if it was purely down to my diet. I used to eat a lot of dairy and eggs as well. 2 eggs a day for breakfast, glasses of milk and yogurts, cheese, butter etc. So it wasn’t like I’d cut everything out completely. I don’t eat as many eggs now but am still quite on it with the dairy products. I’m contemplating eating fish again just to see if that makes a difference. But I know that it won’t because I started getting these symptoms when I was still eating meat and I ate a fair bit of it! I just didn’t realise the symptoms weren’t normal and carried on. I feel doctors just don’t listen to you, especially if many of your symptoms are “invisible”. I’ve got an appointment on the 29th to discuss my b12 so I’m going to bring a list of what I eat on average in case he brings up my diet and I’m going to bring a list of all my symptoms and say how they get worse sometimes just a month after an injection. Hopefully after that he’ll actually test my IFA. Hope you’re doing okay and thanks for replying
Once they've got a hook to hang it on, Milliemaria42 ...... for me, if I hadn't been vegetarian, it would have been that I'm an ex-smoker or else post-menopausal -so probably antidepressants required !
In fact, my memory loss and cognitive problems were once put down to having smoked, starving my brain of oxygen (and so again, my fault entirely) - but that's haematologists for you !!
I have only just, since January 1st., stopped recording every single thing I eat, just in case someone might accuse me of malnutrition-by-ignorance, when I realised that I was wasting my time. No-one is that interested, and will probably just think I am being obsessive, without reading a word of it.
Besides, I have now seen all the experts at least once, and been signed off. No further forward. It can become detrimental to your health, all this chasing, when you can't get any sensible answers.
DO record your symptoms: I still do that. This is how I know that I am improving (although really slowly) and can see when any symptoms get worse or recur although I can't find a pattern at all.
Best of luck with your appointment. I still get an NHS injection once every 2 months even though they are aware of my self-injection regime.
That sounds horrible. It really is like they find something to blame everything on and then just stop listening to you even though you’re the one who’s everyday life is so badly affected. I hope things keep getting better for you!
They will. It's hard slow work, but you will find times when you suddenly notice that what you did that day would've been beyond you a couple of years back. It's a start. The other thing you need is someone who can remind you of that on the days when you feel like you've backtracked.
Blips happen, turns out it's not the end of the world, or even the end of the slight incline that represents an upward trajectory in health improvement.
Strangely, I still think of myself as quite a strong and healthy person.
I went to GP this morning to check on blood results from last September (!).... folate has improved (>20 ug/L), ferritin creeping up too (53.8 ug/L), osteoporosis of the spine also improved (now -1), and TSH down to 1.95 (last May: 3.39) which is also good news.
Hair has stopped falling out, and only easily visible sign of a problem at the moment is my mouth is very sore and split.....GP even said "You get that when B12 levels are low" !
Not the worst thing, not by a long chalk. Supplementing and alternate-day injections seem finally to be working.
Keep going, keep recording symptoms, stay positive and keep trying to work out what it is you need in order to get better. You are the best judge.
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