When did you feel “normal” again after treatment and what is the new range for b12 levels?

[Ashley820]

Two questions:

1. How long after starting b12 injections did you feel back to your previous self/ “normal” again?

2. Many doctors use the 200-800 range as “normal” even though recent studies suggest that range is far too low. So what is the newer range of “normal” that these studies are referring to?

I have been doing injections for a while now and while I feel that I have improved in many ways, I’m still not back to my former self. Just wondering if it took others a long time to fully recover. My doctor checked my b12 a week after an injection and it was 800 so I’m also curious as to where that falls on the new scale.

[fbirder]

I have never felt totally better. After several years of two injections a week.

There is no national standard for B12 levels. Each lab uses its own ranges. These are set do that their assay doesn't catch too many people who aren't deficient.

In Hull the bottom of the normal range is 115 pmol/L. In Sussex it is 150 pmol/L.

[Seth12345 in reply to fbirder]

If this isn't too personal, what symptoms did you originally have? What never fully recovered?

What was your recovery like?

[fbirder in reply to Seth12345]

MY worst symptoms were fatigue, brain fog, irritability and depression with a bit of paranoia.

The fatigue recovered at first. I went from being incapable of walking 50 m to being able to walk 500 m within a couple of weeks. Over time that gradually improved and now I can take the dogs 5 km. But that's a slow walk without anything to carry. Give me a light load (a pair of binoculars) and I get knackered after about 2 km. Give me something slightly heavy (12.5 kg box of printer paper) and I need to sit down, panting, after about 15 m.

The brain fog went in a month or two. But I still have the odd stupid moment (open a packet of weetabix and take out two - then put them straight in the bin rather than my breakfast bowl). But nothing like my worst moment - finding myself in the tube station at London Victoria with no idea where I was supposed to be going.

The psychological symptoms took longest. They only went when I started injecting twice weekly. And they come back very quickly, My friends can tell if I've missed a day.

[Seth12345 in reply to fbirder]

Thanks for your openness and the amount of details that you're willing to share. It's very helpful for other people that are starting their journeys.

I started out with a lot of GI issues, pins and needles in my arms and hands, night sweats, and anxiety. Most of those symptoms have resolved.

I'm now six months into multiple injections a week and it feels like I'll never get out of this at times. I have a lot of muscle aches and pains but those are pretty manageable for me for the most part. The worst symptoms I'm dealing with now are dizziness, muscle weakness, strange vibrations, and just an overall feeling of being unwell.

The recovery can be very discouraging and scary. Sometimes I feel like I'm the odd case that will never recover from this.

[Nackapan in reply to Seth12345]

It's still early days believe it or not.

It does take time to heal as much as possible. I if unwell also get scared I might get stuck like that.

Seems to go in cycles.

I think also you learn to cope with certain symptoms in different ways.

Try the cawthorne pysio for dizziness . Also learn to move differently. Dont bend when at all possible. Do not turn too quickly. I hate and find pacing very hard but it does help.

[Nackapan]

I wouldnt worry about numbers. They dont mean anything once on injections

It's different for everyone.

I've made improvements but still not my ' normai'

Some get their life back relatively quickly.

It's a rollercoaster.

Hope you get ti function better soon.

[Jengastar]

Hi! I would say after 3 injections I felt 80% recovered. My memory, mental health brain fog and majority of fatigue just went. But after 5 month of daily injections I’m still only 85% recovered. My main issue is I can’t run and train. I have started on sleeping tablets and working with a physio as my proprioception didn’t come back and feel a bit better. But still wouldn’t say I’m 100% back!

[pitney]

Like fbirder I have never felt totally better, my treatment started with 3mthly injections with my GP about 7 years ago but after very few improvements decided to self inject every month about 3 and a half years ago and found that more of my symptoms improved so have stuck at that . I still have some really rough days but find that by pacing myself I also have some good days .Hope you find a level that works well for you and all best wishes

[Hidden]

Hallo. After nearly 4 years of treatment and more than 600 self injections i feel 60 % recovered. My diagnose was peripheral neuropathy. Every improvement for me is very slow. I can walk with a stick 200 meters, now i walk without stick 5-6 km. Believe in yourself and all the best !