History Of Very Low B12
Hi. I (female 45) have a history of very low B12. First instance was in 2019 and a level of 58 ng/l 😬 and again in late 2023 with 95 ng/l. This was, in the first instance, dietary (vegetarian for 30+ years) and in the second occurrence, careless on my part. I accept full responsibility for it. Intrinsic factor negative. I felt no better in either case after loading shots, maintenance dosing (12 months) and b12 and folate supplements. Typical presentation of fatigue, weakness, breathlessness, tinnitus, cog fog (at one point couldn’t remember how to change bed linen), lack of co ordination, balance issues, weird sensations in limbs, headaches, memory issues etc. GP dismissed this as anxiety and depression when I explained I was still feeling terrible after several months. B12 levels were 1400+ with high folate.
Managed b12 with high dose oral supplements once shots were stopped after allergic reaction towards the end of loading (2023). B12 levels found to be 1300+ with high folate.
Fast forward to March this year. Seen by neurology for tremor and balance issues . Still experiencing neurological symptoms (as above with some extras thrown in) but not asked about anything other than tremor. Bloods taken with B12 levels of 1019, folate and ferritin on the lower end of normal so have started with a higher dose of those and have also added in vitamins c&d.
I told the neurologist that I was aware that very low b12 can cause irreversible neurological damage and that I was concerned about it. This wasn’t addressed or even acknowledged and she proceeded with a diagnosis relating to tremor only.
Been to see my GP this week. I brought it up with them and they told me that neurological symptoms of b12 deficiency would have resolved quickly after therapy. From researching, I don’t believe that to always be correct in cases of prolonged and severe deficiency. Surely levels of 58 would have to be prolonged deficiency (clearly didn’t drop that low overnight) and I would think severe
. The symptoms have never gone away or improved.
Thoughts? Clutching at straws? Please and thank you.
* I am not looking for anything to be wrong. I would like to understand why I feel like this and hopefully find a way to improve*