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.

Yes you need to immediately start the loading doses of B12 injections. My daughter was a similar level to you and felt dreadful. I’d ring and speak to the practice manager and ask for an appointment today or on Monday at the absolute latest. Take it easy this weekend as much as you can. They should then investigate why the level is so low but the most important thing is starting those injections.

Is it worth a call to 111?

My surgery closes early today, and the receptionist was adamant that nothing else could be done until the results are reviewed by the GP who requested the bloods.

Are you vegan?

No.

Have been vegetarian for 25 years, but eat dairy and eggs every day. Have fortified cereal and yeast extract too.

Blood folate levels were good.

Mine is worse than yours in the 40s. Ive had the injections but actually prefer the pills.

I've phoned the surgery back, and explained that I am really concerned about a delay, given I feel so awful.

They have booked me in for an emergency appointment this evening, which is a relief.

Just want to feel 'normal'

I really feel for you, B12 deficiencies are awful! I’m glad you’ve managed to get an appointment this evening.

The GP told me initially to take tablets for two weeks, then I had another blood test and after that I started on injections - every other day for two weeks and then every 3 months for a year. Some people find an immediate boost from the injections but I didn’t feel normal again for a while!

Interesting to hear that, thanks.

As my folate levels are good, I wonder if that makes a difference to the treatment.

Loading doses and regular injections I have them every 8 weeks now

Thank goodness for that. They can at least review the result even if they don’t start the loading doses until early next week. Sometimes no cause is found but they should investigate reasons.

Fingers crossed.

There are a lot of symptoms that make a lot of sense now.

You need loading doses for two weeks. I had this last year and they came up, I now pay privately every eight weeks and it’s fine

I thought I was the only one that preferred the pills. Genuinely couldn’t feel any difference after the B12 loading doses (my level was 84 I think), although I did also have low ferritin so it’s possible that my symptoms were more related to that.

I take the high strength pills from boots.

Daily tablets, no loading dose considered

As much as I didn’t find the loading dose useful I am surprised they haven’t offered that!

If the issue is absorption, the tablets won’t work

I’m a coeliac and have experienced severe B12 deficiency twice. Both times cured by injections. I take B12 tablets, but have to take high dose 1000mcg tablets because my damaged intestine only absorbs a tiny fraction.

But they haven’t checked to see if absorption (or lack of it) is the issue. If it is, tablets will do fuck all (except squew any further B12 blood test results)

Blood test for immune/intrinsic factor alao scheduled

I pay for my injections. It is all down to cost. Yours is low enough for injections and kike ear syringing, years ago it was offered, now they try and give you tablets. I have mine at a beauticians. Best £25 I spend every 6 weeks. I would make sure they tests again soon xx

You have a medical need for the injections and have been fobbed off. You don’t have to pay when you are severely deficient. Have a look at and send this document to your GP. https://www.nottsapc.nhs.uk/media/3xufkasz/vitamin-b12-treatment-guideline.pdf The tablets will take too long to get your levels back to normal. I don’t think people realise how serious being so deficient can be. When my daughter was this low I became “that parent” at the GP surgery. Try again on Monday.

Meant to add that you have tingling so that would be a neurological symptom which makes you eligible for the injections.

Mine were 108 and I was given loading doses (although was admittedly 6 weeks pregnant too which may have swayed the GP)
That was 6 years ago and my levels have remained up, despite my diet having no natural B12 in it. At some point they will drop again and I'll probably just pay the £12 to have it done, I will make sure its safe and legit though.

It can be really serious having such low B12, the tablets won't process fast enough.

This happened to me. Fobbed off with tablets as there was no nurse available for the loading doses of injections. I still experience tingling in my fingers now regularly, so I think having such low levels led to permanent damage.

I have B12 injections every 8 weeks now otherwise I feel the start of the symptoms again.

Keep pushing for support.

Mine is an autoimmune illness, though I have been veggie for over 35 years. No diet or tablets will help me because I can't absorb B12 orally. Injections are essential. Make them inject the stuff very, very, very slowly. They don't have to hurt. Good luck