B12 Injection Symptoms/Advice

[CMJ202021]

Hi,

Pretty new here but I was recently diagnosed with having low b12, results attached.

I've had all 6 of my loading doses and finished these about 3 weeks ago. After the first few injections, I've developed a bit of a tremor and starting to experience tingling and burning at times in my hands, I read the side effects of the b12 and it seemed pretty normal for me to experience these symptoms. I'm also struggling to sleep and wake up multiple times during the night, unsure if this is the B12.

I had a follow up blood test 2 weeks after my last loading dose to see if my B12 had worked and my levels had gone up to:

Serum Vitamin B12 - 1500 ng/L - 150.00 - 620.00ng/L

Serum folate - 5.5 ug/L - 3.10 - 19.90ug/L

The tingling has gotten better but the tremor is still here and I've started to develop a ringing in my ears which I've had for about a week now.

I did mention to my GP that my folate has dropped but she said it was still in range and was concerned about my tremor as I'm "only 24" so has referred me to a Neurologist. I did mention having injections every other day if experiencing neurological symptoms but was told we just do 6 loading doses and 1 every 3 months.

I'm just not really sure where to go from here, I understand things take time but should I be pushing for more injections as I've started to experience neurological symptoms? I didn't have these symptoms prior to the injections but guessing with my B12 being pretty low that it's done some damage. Also, is my folate a reasonable level as I've dropped slightly since having my injections, concerned it'll keep dropping.

The reason these tests started was due to headaches and tension in my left side of my head, I've seen an ENT consultant and he believes I have TMD, reason I mention this is because this could also be causing the ringing in my ears, maybe not the B12.

Appreciate any guidance/advice as this is a new world to me and I'm just trying to get the best possible treatment, sorry for a hefty post.

[Nackapan]

I also got tinnitus after starting injections.

At your agd 400mcg of folic acid daily is recommended so why not take that.

There is alot of information on PAS and bnf about b12 regime.

I would push for more injections as you have neurological symptoms.

Ask to determine cause of deficiency.

A negative IFA test does not rule our PA

No more levels of b12 need testing once on injections as it is bound to be high . Starting treatment does wake up alot of nerves.

Hopefully the tremor will settle. A very common symptom. Glad you have a referral to a neurologist .

Also worth getting your vit d level checked .

Hope you make improvements soon.

[CMJ202021 in reply to Nackapan]

Thanks for the advice.

I was unsure on taking Folic Acid as I’ve read it can hide issues from the B12 deficiency and was unsure with the GP saying it was still within normal range.

Did your tinnitus calm down as time passed?

[Nackapan in reply to CMJ202021]

B12 is treated first . Thars the important thing.

Yes tinnitus improved but not gone. Fir many it does though.

[Narwhal10]

Hi CM,

Welcome here. Nackapan has covered most things. I’d recommend keeping a diary of your symptoms. Yes, I’ve got tremors and tinnitus as I am not that long into treatment. There’s a phenomenon called the reversing out process, so as nerves heal you may experience warmth or other bizarre sensations in an area. I had trigeminal neuralgia - ouch. It has subsided though.

All the best.

[CMJ202021 in reply to Narwhal10]

Thank you.

Hopefully the tremor/tinnitus calms down over time.

I do get the odd sensation of warmth in my head so this makes sense.

[blue_sunflower in reply to CMJ202021]

I am 23 and had low b12 (293) in July and my doctor suspects PA since I am young and quite healthy. I’m getting tests done again in December, but I also had the warm/tingling sensation at the top/back of my head, usually accompanied by anxiety (or maybe it caused my anxiety? Like a chicken and the egg situation). With the oral supplements of Methyl B12 it has become less frequent, although it’s been a slow phase out after 4+ months of supplements.

[JAMV in reply to CMJ202021]

Hi CMJ202021 how are you doing now?

[GGourmet]

Hi, I know your article is a few months old but this was me, except my B12 was at 73 the laboratory didn’t flag it, I did and my GPs decided not to treat me because PA is ‘very rare in men’ according to a local ‘eminent’ gastroenterologist. Forget all the other causes then?

My folate kept dropping too but stayed just above min.

After much arguing and getting referred to a chocolate teapot neurologist and haematologist who seriously didn’t know the NICE loading regime. I finally got my GP to give me loading doses however, these were weekly because of the haematologist not knowing the guidance and my GP deferring to the specialist.

Long short, 4 years on I am now almost fully recovered. Many many tests later, no cause could ever be found but underlying IBS was suspected. This was treated and took 4 years to recover from. The neuro damage is mostly repaired but the damage to vision is still there although much better.

Keep going, it may take longer than you think but I believe you will be pleased with the end results as I have.