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Original poster

Low B12 but no treatment or diagnosis

28 replies

SimplySoo · 17/10/2023 14:37

I've been feeling fatigued and getting awful stomach bloating/constipation/piles for a few weeks. GP gave me blood test results yesterday: low vitamin B12 (but iron levels fine). Told me treatment is six B12 injections, but when I went to book I have been told the first appointments are mid November, so a month away! I am also due to have more blood tests and another stool test to rule out coeliac and autoimmune issue as no idea why I have low B12. My diet should be fine.

I am worried about feeling worse over this month. Can anyone offer any lived experience or insight into similar? I am otherwise usually fit and healthy, but feeling really low now.

OP posts:
pecanpie101 · 17/10/2023 14:41

If you don't mind waiting then take the November appt. You can get them done privately if you can afford it.

pecanpie101 · 17/10/2023 14:43

And start using b12 vitamin tablets, they won't be at the high dose you need but it's better than taking nothing.

Original poster
SimplySoo · 17/10/2023 14:45

Of course I have booked the appointments. I am just despairing about what to do in the meantime, that's a month away and I need to work/look after the kids/other commitments. I'm feeling crap

OP posts:

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IDriveMySupernova · 17/10/2023 15:09

You can book private B12 injections, I think they're about £30. Superdrug do them, or there's a chain of pharmacies that do too. Google it. You can also use BetterYou B12 spray.

Original poster
SimplySoo · 17/10/2023 15:51

I appreciate what you're saying but then how would I book a blood test to check they have worked? I'm concerned about not having a diagnosis about why this is happening.

OP posts:
Fissssh · 17/10/2023 16:13

November is 2 weeks away, unless your B12 is under 100 you should be fine to wait until then. They'll be wanting to rule out pernicious anemia and coeliacs (neither of which you'll have any control over they are autoimmune conditions) if you have neither you may well be told to take tablets for life once you've had your loading doses.

Original poster
SimplySoo · 17/10/2023 16:39

Fissssh · 17/10/2023 16:13

November is 2 weeks away, unless your B12 is under 100 you should be fine to wait until then. They'll be wanting to rule out pernicious anemia and coeliacs (neither of which you'll have any control over they are autoimmune conditions) if you have neither you may well be told to take tablets for life once you've had your loading doses.

My appointments start mid November (13th to be precise), so that is a month away. My level is 101. So I am worried and I've been left to it. No tests until then either, still struggling with gastro issues.

OP posts:
soxthecat22 · 17/10/2023 16:50

I think you need to calm down. Whilst low B12 will make you tired it isn't life threatening and is ok to wait for treatment. Book the November appointments, pay privately if you can afford to and or take a supplement whilst you wait.

Fissssh · 17/10/2023 16:54

soxthecat22 · 17/10/2023 16:50

I think you need to calm down. Whilst low B12 will make you tired it isn't life threatening and is ok to wait for treatment. Book the November appointments, pay privately if you can afford to and or take a supplement whilst you wait.

At the level the op is at she may be experiencing neurological disturbances like dizziness and feeling like her limbs aren't connected.

OP call your surgery back tomorrow and politely but firmly request a sooner appointment.

Begonias · 17/10/2023 17:03

I've had wait 3 weeks to get my B12 jab tomorrow at the GP surgery, I had neurological issues dizziness, neuropathy and it took 3 months to convince them to test my B12. It came back at 84, no rush to fast track appointment. I can't absorb the tablets so have been using the spray in the interim.

muggart · 17/10/2023 17:41

Sorry to hear about your difficulties. That said, you can actually really improve your b12 levels with food. I suggest that you order some beef or lamb liver from a farm, and also some marrow bones to make broth. You don't need to rely on the nhs to help you here.

MrsHamlet · 17/10/2023 17:57

muggart · 17/10/2023 17:41

Sorry to hear about your difficulties. That said, you can actually really improve your b12 levels with food. I suggest that you order some beef or lamb liver from a farm, and also some marrow bones to make broth. You don't need to rely on the nhs to help you here.

That's not necessarily true. Some people can't which is why we have to have injections.

henrysugar12 · 17/10/2023 21:16

muggart · 17/10/2023 17:41

Sorry to hear about your difficulties. That said, you can actually really improve your b12 levels with food. I suggest that you order some beef or lamb liver from a farm, and also some marrow bones to make broth. You don't need to rely on the nhs to help you here.

Op said that she's waiting on stool sample tests to see if there are further issues with why her b12 is so low.
I have IBD which means I do not absorb it from my food.
I've just a a course of injections which have made absolutely no difference to how I feel! I need to have further blood tests to see if they actually worked!

CCSS15 · 17/10/2023 21:25

I had something similar in that they tried to identify if anything had caused it via blood tests but just ended up being one of those things
You should be able to start b12 without it impacting your other tests as they aren't testing for b12 levels now
A number of us order b12 from pharmacies / amazon in Germany and self inject - do some googling as there are some support websites which can help

Bimblesalong · 17/10/2023 21:41

I had the same situation with my nhs jabs and having to wait a month. I was not walking well so decided to get two private jabs done to front load iy swim. They helped and I was then able to follow up with my loading dose. Took a few weeks for my body to build up but I’m bouncing now!
all the best, OP.

Velvian · 17/10/2023 21:48

You'll be fine @SimplySoo . I'm rubbish at booking mine in in good time. Don't expect a dramatic improvement, it takes a while.

It's not too much to worry about, honestly.

Romeo · 17/10/2023 21:52

Once you have supplemented with B12 you can't check the levels again for months as it isn't an accurate result

And if you stop taking B12 you'll be back in the same position

So start taking the spray it's very good and certainly better than nothing

bellac11 · 17/10/2023 21:55

Its not problematic to wait 4 weeks to start your treatment. Its not right (and so your thread title is misleading) to say there is no treatment, there is treatment and it starts soon.

Its not an emergency.

Sleeplessinseattle234 · 17/10/2023 22:05

I had to wait a week for mine. And that felt like a lifetime. But please don’t think that having ur injections will a) make u feel better straight away and b) make u symptom free.

it took me at least the first big doses and then at least three more after that to start feeling better. So even if u have them now the chances are it’s going to take a while to feel better. I am aware this isn’t always the case. Just telling u my experience.

I have been left with bad feet because of lack of b12. It really can sometimes just help. But most of the time I still feel tired. If u have Facebook u can join the b12 pages. People will help u.

I have only ever had one check to check my levels and that was five years after diagnosis.

Velvian · 17/10/2023 22:53

What do you mean about your bad feet @Sleeplessinseattle234 ? I have plantar faciitis and arthritis, but gave not linked it to the B12 deficiency.

Sleeplessinseattle234 · 18/10/2023 06:29

@Velvian one of my symptoms and the main reason I went to the doctors was my feet. They were hurting so much that I couldn’t walk. But it took a while to get tested. They told me fibromyalgia for ages. My feet have never been the same since.
During covid they stopped the b12 here saying we could last a year without the injection. Two months later I insisted they gave it to me or signed me off work because of my feet.

Some time I also feel like the injection works better than other times. And I know others have said that as well.

Velvian · 18/10/2023 09:42

That's interesting @Sleeplessinseattle234 . I will have to pay attention to whether my feet are better after my next injection.

mindutopia · 18/10/2023 10:24

You have the appointment booked now, so that's great. But if you are keen to get started, then just book one or more in privately in the gap. It doesn't mean you can't still start the NHS course of jabs. It just means you will have gotten a head start on upping your levels, which means you will hopefully see improvement a bit sooner. Then you carry on with all your NHS tests in the meantime.

I have a GI condition (similar to IBD) where I don't absorb things properly. I was both vitamin D and folate deficient. I was advised to sort it privately and given guidance on what dosages to use. Obviously, getting injections is a bit more complicated than taking tablets, but in the longer term, you may need to seek them out privately anyway. So I'd just get started now if you can.

SteaknSalad · 18/10/2023 11:01

If I were you I would book myself in for the November appointment, and then try to manage over the next month by:

  1. Going for private B12 injections, various pharmacies offer them.

  2. Taking high-strength B12 oral spray every day. It’s supposed to be absorbed better than pills, you spray it under your tongue and then hold it there so it can be absorbed straight into your blood stream via the blood vessels under your tongue.

  3. Eat lots of high B12 foods in the meanwhile. Liver, beef, lamb, sardines, etc. This won’t help much if it turns out you have issues with the gut taking up B12, but probably still worth doing in case that’s not the cause for your low B12.

I’m sorry that you’ve just been left to muddle along over the next month whilst you’re feeling so ill. Unfortunately the NHS seems to be like this across the board now, so many of my friends and family members have had to go private for various issues over the last couple of years.

SaryMhelley · 18/10/2023 11:03

SimplySoo · 17/10/2023 15:51

I appreciate what you're saying but then how would I book a blood test to check they have worked? I'm concerned about not having a diagnosis about why this is happening.

You won’t need one to check they are working, they will. You need one ideally around 6 months after the loading dose to check your levels haven’t dropped again.