My story. Need some advide

[Zeffy90]

Hi everyone, I'm new on this forum (although I registered in July). I want to share my story since I'm looking for some help and advice. Don't mind my poor English skills but I'm not used to write in this language. I'm 30. It has been years of feeling unwell and sick but two years ago my health started to decline really fast. Some of my worse symptoms were both eyes twitching all day, a constant lump in my throat (I really hate that feeling), sciatic nerve pain (some days I couldn't walk without pain), fatigue, moods swings (my relationship really suffered for this reason), heartburn, poor digestion, anxiety and depression. Finally this summer, in July, I found the cause, my b12 levels were very low (24 pg/ml). The worst part is that none, family or even my doctor, were really concerned. "It is just a vitamin deficiency". But the thing is that I was already taking daily pills of methycobalamin and methylfolate (for 6 months). Why I was already supplementing? I knew something was wrong and I was trying different supplements. But when I found my b12 deficiency none really supported me (not even now). I told that I was already supplementing to my doctor. He just prescribed me some other cheap b12 pills. I tried taking multivitamins and nothing really changed. So, after I found this forum, I started to autoinject b12. I injected every other day for 2 weeks and now I'm injecting weekly. Some of my most annoying symptoms went away. It was like a miracle in the beginning. But lately my improvements stopped. Unfortunately, due to covid, I'm unable to proper test to understand the cause of this deficiency. I tested (in July) for other deficiencies, but my vitamin D levels and ferritin are ok. I didn't test my folate levels. I also tested (two years ago) for helicobacter pylory but the result was negative.

What I'm asking is:

1) I injected without consulting my doctor. Am I doing right?

2) Is injecting weekly enough?

When I started injecting every other day my health was improving a lot. Now it isnt improving anymore. I'm surely feeling better than before but sometimes my symptoms come back. I'm still fatigued and my digestion hasn't really improved. Another thing, after I inject, for two hours some of symptoms come back especially (the much hated) lump in my throat and mood swings. Is that normal?

3) Is there something else to take?

I tried multivitamins but for some reason they make me feel really sick (and I can't focus at all). I tried folate/folic acid but when I take it I feel like fainting the whole day. For my digestion I tried betaine-hcl but my stomach really hurts after taking it. I tried probiotics with no success.

4) What could the cause of my deficiency be?

I know I should consult a specialist. But it is really difficult in this period. I was thinking of pernicious anemia. But I don't have anemia. Could IBS be the cause? But I was aleady supplementing b12 for months without success.

[Nackapan]

As you have been injecting b12 already. I would personally go back to injecting every other day as it gave you improvements

Talk to a doctor on the phone.

Get advice that way.

Your level. was very low, doctors will prescribe at that level.

You obviously have an absorbtion problem as were on oral tablets.

Tell your doctor you csnt absorb from tablets and need b12 injections

B12 when you have been very deficient stirs up your nervous system. Can get worse before better

Most importantly get the treatment and discuss with a doctor.

Good you have had bloods dine to rule out things

Your folate level should be tested .

B12 should be treated first.

It's considered safe bu NHS guidelines to take 400mcg folic acid daily. Any higher doses should only be taken on prescription and for a short time.

Is you look on this site and T . Wiley and Pernicious anaemia society information. For possible causes and information.

Take care