B12 Deficiency - any advice?

[ginandoreos]

Hi, I went to the doctor with symptoms I associated with peri-menopause. Depleted energy levels, always tired, brain fog, forgetfulness. Low sex drive. Lack of sleep - disrupted sleep. Mood changes. Last week at work I stood up quickly and almost blacked out.

I went for a blood test and the only one that has been flagged up is b12. The level is 154. I have a follow up call with the doctor next week.

Around a year and a half ago I did follow quite a strict vegetarian diet of vegetables, lentils - I still ate dairy products - rice, grains etc - I felt like I was eating a balanced diet. I’m wondering if this has triggered the low b12. I do now eat chicken and fish but not red meat.

My mum used to work in a lab (about 50 years ago!) and said something about the shape/size of my blood cells being slightly high (MCV).

I just wondered if anyone has had a similar experience, what the next steps may be - and any advice. Thanks!

At that level they should give you a loading dose of B12 injections, check intrinsic factor antibodies and, if it’s not an absorption issue, should recheck B12 levels after 3 months to see if they’ve dropped low again.
If intrinsic factors are normal they should also do a coeliac blood test.
You will feel miles better after a loading dose. It’s 6 injections over a couple of weeks. Nice guidelines actually say to inject until no longer symptomatic, but I do b12 injections and have never seen this done.

@YouDriveMeCrazyButICanDoThatMyselfThank you so much for such a helpful response, I really appreciate it as it’s been on my mind all evening. At least I can chat to the GP with a bit more of an understanding.

I’m feeling guilty that I’ve bought this upon myself with some questionable diet choices, thinking I was being healthier but actually causing damage.

I hope my GP is thorough and orders the tests that you have mentioned, fingers crossed.

I have low b12 and folate and high iron/ ferratin. Blood panel came back ok this time except b12 etc. Waiting on b12 to stabilise then I have to go get tested for hemochromatosis. I've done the fasting bloods and it was high ferratin
I feel awful. Fainty all the time. Mouth burning then like coated in wax. Can't taste sometimes. Sense of smell goes in and out. I'm freshly 46. Feel 100.

Good advice from @YouDriveMeCrazyButICanDoThatMyself . I have had the B12 injections but now on tabs. Mine prob to do with being veggie for around 44 years. B12 has fluctuated over the years. But GP ordered all tests mentioned. Now 2 cyanocobalamin tabs a day as found over the years I found taking 3 a day a faff to remember. Having spoken to GP he said I can take 2 at once! However,I felt no better after the B12 injections and have been diagnosed with fibromyalgia and cfs. Deffo get the tests done as suggested.

I have good b12 levels and I'm vegan. It wasn't your diet that caused the problem, just lack of research to make sure you adequately supplemented.
Dairy is high in b12 as they supplement the cows with it so if you still ate dairy it's unlikely to have been your diet alone.

I do eat dairy

You can get a spray form b12 online very easy or add nutritional yeast to your cooking to increase your b12.

Floradix - holland and Barrett vitamin b12 tonic - felt amazing after 3 days - totally cleared fatigue and brain fog - highly recommend x

Mine was 148 and I had the loading dose (every other day for 2 weeks) and now I have an injection every 3 months. I have found though that I was still feeling like I needed more so I take b12 spray daily and that seems to get me into a range where I feel more normal. I can really tell when I am due my jab, my get up and go gets up and leaves then a few days later I get the text from the drs to book

That’s low op, I’d look at the NICE guidelines and ask your GP about loading doses the b12 injections every 8-12 weeks

I am coeliac and had low B12 on a blood test apparently with me it’s due to malabsorption. I started taking a blackcurrant vitamin B12 spray as recommended in Holland and Barrett as it gets into the blood stream quicker. It works for me as B12 levels now within normal range at my last blood test.

I have developed a B12 deficiency over the past few years. Do not let the doctor fob you off with supplements. Get the injections.
I’ve been injecting every other day for 9 months and now feel normal. If I forget, I go downhill very quickly.
If you have a normal diet, don’t take PPIs ( like omeprazole) and still have issues it will be due malabsorption and oral supplements mask the true amount of B12 your body can actually “use”. Look at some of the Facebook groups or Pernicious Anaemia society and good luck.

@Happytap I thought abit more re your post and feel tis rather patronising re 'lack iof research' comment. I am now 56 and can assure you I am fully aware re research etc and my diet ain't bad. GP thinks there may be a link..who knows? However, perhaps other health issues have contributed.

@Littlemessymiss this really depends on your GP. A nurse practitioner phoned me re the results. I asked about injections and she said no. We will retest you in 12 months time. I felt so rubbish late 50’s I asked what I could do to help myself as couldn’t stand feeling the way I was for another 12 months. She said I could maybe try and improve my diet. I also asked about B12 supplements and was told to try them.

I have pernicious anemia and agree with the first poster. Don't bother with sprays or supplements as they won't help if you have absorption issues and not strong enough to help when you are so far under. You will feel like a new person by the end of the loading doses, just make sure you have time to rest after the first couple as my body went into sleep mode (I was a little lower than you but still I don't think I could have worked). It's intense for the first lot then you might need them every 3 months and you might have to pay for them, depending on your GP. I have to pay for my ampules as the surgery said they are too expensive but for the energy I get I'm happy to do that, just wish I could have them every month tbh!

My one serious advice is to ask them to inject SUPER SLOWLY as it can actually really hurt if they rush. Good luck!

Some pharamcies offer the injections if you google, if you are happy to pay, but if you are below the NHS threashold (which is already set pretty low compared to other countries ranges) you really should get the loading doses.

Edit to add I actually changed my GP after they gave loading doses then immediately did bloods and said now I was too high and they wouldn't supply the next dose free. It's a "trick" they use to not have to pay for the ongoing treatment. It took me 2 years of not being able to work and then having severe health issues for them to actually agree to the doses in the first place, so don't be afraid to try a new GP.

Thank you for posting this - it's an interesting thread.

I have recently had blood tests which showed my B12 levels are 134. I had a telephone consultation and the doctor seems entirely unconcerned and just suggested I tried over-the-counter B12 tablets. They'll test again in 6 months when they'll also check intrinsic factor. 5 years ago my levels were even lower (92) but prescription tablets brought it up to 340ish. I'm wondering whether I should push for a loading dose.

Sorry, wasn't intending to be patronising. Just to the OP who replaced red meat with lentils etc (very good for your fibre, gut & heart health etc) it was a comment to say that actually although that is really good for lots of reasons it might not have been obvious that she would have had to also supplement b12.

If you are veggie and eating cows milk products I wouldn't have suspected your diet to be a cause as cows milk contains lots of b12 because they put the supplements in cows feed. Sadly GPs have limited training on diet. We've seen a NHS dietician a few times and they've always been fantastically knowledgeable and helpful.

Following as this showed up on my recent blood tests too, I'm doing over the counter supplements and retesting in three months and if it hasn't increased much I will push harder for injections

No worries @Happytap thank you. I do agree re GPs limited knowledge and have wondered re Pernicious Anaemia etc. Have had the tests etc. Seems to have fluctuated over the years. But always borderline or below.

I had a similar experience to you. My active B12 and total B12 were rock bottom around 5 years ago, but the GP didn’t want to know. I paid for private blood tests to check for parietal cell antibodies, but they came back negative. I was at a bit of a loss what to do, so I took the high strength BetterYou B12 spray daily and my levels gradually rose just back into range. (Wouldn’t recommend this over injections obviously - it was just my only choice at the time!)

Was recently diagnosed with Coeliac disease (now rock bottom folic acid & vitamin D levels too!) which probably explains a lot!

Did you mention about having such low levels 5 years ago? I would definitely push x

Thank you so much for all the replies! I just randomly checked the thread (I didn’t have notifications on) and am very grateful for all of the perspectives and experiences shared.

My blood test for coeliac came back negative. I’ve had a second test for intrinsic factor but apparently the hospital have a new machine so this may take a while…!

I’ve just been wiped out with flu so energy levels really hit the floor.

My GP will call when the next blood test result is available - she said to take b12 tablets until then. She did mention injections in our conversation so I’m hopeful that I can get those to try and get my levels up swiftly. Can I just clarify - these injections would be every 8 weeks or so at my GP practise?
@FirstCuppayou have to pay for your injections - but the GP surgery administer them? @Littlemessymissyou self inject? So do you have a private prescription?

I’ll also look at the spray and at Floradix.

Thanks all x

The injectons should be 3 a week for 2 weeks, to get you up to normal level, and then the every 8 weeks or so would be after that to keep you in normal range.

Sorry, not been on MN for a few days so only just saw your question. Yes I buy the ampule from the pharmacy and take it to be injected by a nurse at my GP practice. It's £9 and I have about 2 or 3 weeks of feeling relatively normal so very worth it in my opinion - certainly gave me a more obvious boost than the antidepressants I was on for 10 years before anyone checked B12!

Hi all, just to say I’ve had 4/6 injections - 2 more to go - and I feel great.

Annoying side effect is that I’m so hungry! But apart from that, I just feel so much more energised.

I hope I still feel this way once the course of injections has finished… if not, I may have to look into a private prescription perhaps.

Thread you to all on this thread for your contributions, much appreciated!