Severe B12 deficiency - what do I do?

[WeMeetInFairIthilien]

Looking for advice on what to do, I can't think straight.

Went to the GP 2 weeks ago, with what I thought was perimenopause symptoms (brain fog, tired, heavy and unpredictable periods). Also, really bad bruising.

GP ordered a full raft of bloods, had these done on Tuesday.

I'm feeling worse over the last week. Dizzy, nauseous, headache, so, so tired. Heart rate has been dropping to 52 bpm when I'm sitting still.

Ferritin levels came back abnormal (29 micrograms/l).

However, the B12 levels are the biggest concern.

71 ng/l.

Deficiency is at less than 145 ng/l

This suggests I'm severely deficient, especially with my symptoms.

What do I do? My GP surgery, when I phoned, just said that my GP would be next in tomorrow and would review the results, and might get in touch.

Do I wait to hear? The recommended treatment is immediate B12 injections. If I wait, there may be a delay until Monday or beyond with the GP.

And I feel awful - tingly lips, headache, dizzy.

Have got to small children that need collecting from school soon.

I take it the injections hurt?

I had normalish levels in 2019, and my diet is objectively much better for B12 now.

4 stone lighter (intentionally) and very active - I was running half marathons in March.

It looks like I should go back and ask/request

1. loading dose (and clear reasons why, if not provided)
2. blood test for intrinsic factor
3. potentially coeliac blood test
4. look at why both ferritin and B12 are so low
5. How to increase ferritin levels.

@WeMeetInFairIthilieni think they are a bit painful but it’s only for a minute.
if it’s pernicious anaemia you could eat all the b12 you like and it will make not a jot of difference.
your plan seems eminently sensible and well thought out

If the OP is eating fortified cereals and yeast extract regularly she will be getting the B12 for a normal person.

Its more likely that she has a specific issue preventing absorption/use. PP are correct, under NICE guidelines she should be on injections whilst its investigated and then consider if transitioning to tablets will work, depending on the route cause.

@AelitaQueenofMars are they scheduling at least a follow up blood test in a few weeks to assess the efficacy of the pills?

My mother had IV drips in hospital. She was like a different person afterwards even her vision had been affected.

I don’t find them especially painful - a slight sting but it’s over quickly.
You can just pay for them, see what’s available local to you, mine are only about £30 each time. My GP wouldn’t entertain the injections until after oral tablets and more bloods, like you I felt dreadful and didn’t want to wait so just booked the injections myself.

To make hemglobin you need iron, B12 and folate. If your ferritin and B12 are low do you also have a haemaglobin under 130? If so that can also be giving you symptoms of tiredness etc.

Mine are sometimes painless. Other times they nip. It’s only for a few second though if they do nip a bit.

Haemoglobin was 132

Folate was 18.2, so very good

I eat a lot of green vegetables, dark lentils, as well as daily dairy and eggs.

Fortified cereals once or twice a week
Marmite a couple of times a week, sometimes more.
General multivitamin

Be careful aboutvtesting after supplementation- its always masked and high

Look on health unlocked for good b12 advise

Places like superdrug used to do b12 injections for about £30/35

Think about a methyl folate alongside ( plus magnesium and potassium)

OP. There are pharmacies and aesthetics companies all over that offer private B12 injections. You could look into that.

DH has malabsorption and we self administer injections now, he has them every 4 weeks.

Sub cutaneous injections don’t hurt at all really.

They don't hurt at all.

@SuitcaseAndSecrets hi, are you able post a link to what you purchase or dm me? Thank yoi

Ferritin - buy ferrous fumerate, take with a fizzy vitamin c tablet. You can buy both online
if you have side effects, drop to taking it every other day
needs to be over 70 ish to be optimal

i am having IM injections, not sub cutaneous and i find them painful. the nurses giving them say they know many people find them painful. pain is an individual thing.
that said, i find it short lived pain and no ‘dead arm’ after like many other IM jabs.

It was my low B12 and ferritin levels that led to my coeliac diagnosis. Similar symptoms - forgetfulness, pins and needles in my hands, very low energy, muscle pain. Oddly, the blood test for coeliac was negative which led to a several other tests to get to the diagnosis. I'm lucky in that my GP is like a dog with a bone and wouldn't give up until she found the reason.

Hope you get to the cause, OP.

Well, it was an interesting weekend.

Ended up in hospital, after my own GP reviewed the test results and sent me to urgent care, who sent me onto A&E. Had to have a Cat scan, more bloods taken. Spent almost a whole day admitted, with iron infusions and B12.

Out now, with repeat injections over the week and next, and got to sort out intrinsic factor and coeliac blood tests.

Phew!

Feeling a bit less dizzy, so that's something.

Thank you all, for your support and advice, it's been appreciated.

I’m not pleased to hear you were in hospital, but I am pleased that someone finally listened to you. Until you’ve experienced it, people don’t believe how strange you feel. Tablets weren’t going to help you feel better.

Just to say, the loading dose made me feel worse at first. I now feel a bit funny and know I’m due my injection. Please do let us know how you get on. I’m pleased lots of people didn’t just tell you to keep going with the tablets. Please don’t go to school until you feel better xx

Goodpeardays. I know pain is an individual thing. I’m sure IM B12 injections hurt. However, I was talking about sub cutaneous injections 🤷‍♀️

I’m so glad that you were listened to. I’m not lying when I say my daughter felt close to giving up when her level was same as yours. I was so worried I was convinced she had leukaemia or similar. People do not realise how serious these low levels are. Hope you feel better soon and so pleased to hear you are “in the system”.

Thank you!

Yes, there was one point when I was lying in bed with my heart rate at 45bpm, wondering if it was going to give out. Was up in the 180's as I was trying to climb the stairs.

I feel muzzy/groggy today and my resting heart rate is still 52bpm, but my active rate is better.

Total brain fuck though- confusion from deficiency and anaemia, whilst trying to navigate through a completely new situation.

The clear talking here made such a difference, and did reinforce how important it was to get prompt treatment.

You will feel better once you’ve had the loading doses and iron levels are up. Years ago people died from this so I definitely think you’ve done all the right things. Take it easy, rest as much as you need to until you feel more normal again.