Update on levels

[Nathan12345]

My b12 is 916 and my folate is 12.7 is this good as i have no idea, my doctor said it is but I'd rather get another opinion on it as i still have some b12 deficiency symptoms (they have improved but i know feel tired again)

[LtAngua52]

Hi Nathan,

What are the ranges? Generally a b12 level at around 900 is very good but how long have you been supplementing? I assume you are as you say things have improved. Did you have loading doses to start? They should be every other day until symptoms stop improving if you have neurological symptoms and then every two months. Although many need injections more frequently. You do know they are for life too don't you? Don't let your doctor stop them because your level has improved. If you are continuing having injections or taking supplements it can take a long time for your symptoms to get as good as they can be. Months, perhaps a year I've read.

If you have been deficient for a long time, you may have some permanent damage. I know I have after being deficient for at least 15 years without treatment.

I'm not an expert at all but many on here are who will provide more useful information. I inject weekly but have some symptoms that I don't think will ever go. But I will be optimistic!

[Nathan12345 in reply to LtAngua52]

The range is 190-600 I haven't have any injections and have been supplementing for about 11 weeks now, the past two weeks I've been taking a 5000mcg methylcobalamin tablet

[LtAngua52 in reply to Nathan12345]

Hi Nathan,There is a difference too between taking a tablet, which goes into your stomach and the sublingual b12 lozenge that dissolves under your tongue. If you have an absorption problem then lozenges will be better as they bypass the stomach, going straight into the bloodstream instead.

If you are using lozenges already then try more than one a day. I ended up taking upto 10x5000mg a day! Self injecting is much better.

Your doctor shrugged your concerns off because she has little to no knowledge of b12 deficiency. It's a sad fact of life but true.

[Nathan12345 in reply to LtAngua52]

it's the sublingual form i take, i let it sit on my tongue and dissolve, i have noticed that since taking medication/sublinguals to treat it i have developed pain in my ring and little finger (possibly due to the ulnar nerve) but i've seen on others posts that this can be somewhat common.

[Gambit62 Administrator]

Nathan, I presume you are receiving injections for B12 - in which case the results of the Serum test doesn't mean anything, unless it continues to be low. From posts yours seem to be showing a steady rise. However, that doesn't necessarily mean that everything is okay as serum B12 only measures what is happening at the cell level - it tells you nothing about what is happening at the cell level - which is where B12 counts - and there is plenty that can go awry between blood and cell.

The folate looks as if it is probably just below mid range - but difficult to tell without the range. Would be more interesting to know what the trend is rather than the absolute result - if it is falling then that would imply that you are using more than you are actually getting in (quite possible if you are processing a lot of B12).

Best thing is to keep a diary of symptoms and chart them in relation to shots ...

fbirder put together a very useful summary of documents that can help to educate GPs about correct diagnosis and treatment

frankhollis.com/temp/Summar...

[Nathan12345 in reply to Gambit62]

I've never been offered injections and when I mentioned it to the doctor she shrugged the idea off so I've been taking a 5000mcg methylcobalamin tablet once a day since

[Gambit62 Administrator in reply to Nathan12345]

Well the tablet is obviously doing something to the levels in your blood - however B12 deficiency isn't about what is happening in the blood it is about what is happening at the cell level - there are a couple of things that can actually stop B12 in your blood getting through to the cell level.

Have you kept a diary of symptoms - and if so have you noticed any improvement in symptoms - its what is happening with the symptoms that actually counts.

[Nathan12345 in reply to Gambit62]

I haven't kept a diary but i know some of my symptoms have improved, some have returned and some are fairly newish, my mood has improved and so has my vision (not so blurry now), i still get some psychosis but it's not as bad as it has been, my memory has improved a little (before i had trouble remembering what i did in the morning when reflecting on it in the afternoon), i have more energy now (i go to the gym for 2/3 hours every other day aswell as work in the evenings) my head at times can feel foggy but nowhere near as bad as before, my calf muscles don't ache anymore when walking, my shortness of breath has gone, the one thing that seems to linger which worries me slightly is isolation, i tend to stay in if i'm not at work or at the gym and i don't really talk to people, i've never been like this and i was all up for meeting new people and forming relationships but now i feel like i can't be bothered with it.

[Gambit62 Administrator in reply to Nathan12345]

It can take a while for things to improve, and sometimes what feels like things getting worse can be part of healing - eg if nerves haven't been communicating properly for a while it can take a while for the brain to adjust so it feels more aches and pains for a while.

If you are doing more because you are being more active then that could be why you end the day feeling more tired.

Is the tablet you are using a sublingual? one that you put under the tongue to dissolve. At least some of these will be absorbed through the membranes in the mouth so it is a more efficient way of getting B12 in that a tablet that you just swallow if you have an absorption problem in your gut.

[Nathan12345 in reply to Gambit62]

yeah, i'm taking a sublingual tablet, 5000mcg methylcobalamin from jarrows

[Gambit62 Administrator in reply to Nathan12345]

you could try adding in some adenosyl as some people can have problems converting methyl to adenosyl and the body needs both forms - otherwise do you know what is going on with your folate levels.

B12 can, unfortunately be quite a bit of trial and error.

Focus on what's improving - note what seems to be going backwards and give it a bit of time.

[Nathan12345 in reply to Gambit62]

yeah i asked the ranges of folate but i can't remember it but the doctor did say that the level is in the middle, is it possible that this might not even be related to once having a b12 deficiency, as my levels have increased significantly but i still feel so crappy?

[Gambit62 Administrator in reply to Nathan12345]

just mentioned it as it can get low if you are trying to process a lot of B12 - if it is still around the middle after the supplementation then you are probably okay and it's either the need for time or the need to try with different types of B12, different delivery methods until you hit on something that works for you.

You mentioned about not feeling like socialising - that's quite a common thing with B12 so it may just be that you need time. I was deficient for many years before I finally got a diagnosis - and I had got quite adept at avoiding company - I still like my own company but I remember several months after I'd started treating myself that I was quite happily interacting with people much more than I had been. It wasn't a fear or a lack of confidence but more that I really didn't find that interacting a lot with people felt rather false - and sometimes I would find other people really boring and just wanted to get away from them. So, may just be a question of time.

For me the psychosis was more at the end of feeling totally overwhelmed by everything and really not being able to differentiate the conversation I was having from one someone else was having over the other side of the room - another reason for avoiding social situations. It would hit me walking across the foyer in a station ... and I had to totally rethink the way I rode my bicycle - had to start focusing on the road etc because the usual thing of being aware of all the movement around me (looking for danger) was just too overwhelming.

[Nathan12345 in reply to Gambit62]

thank you, i'll give it more time and reassure myself that it'll take some time, but i'll stick at taking a supplement and multi vitamin and look into a different cobalamin if i don't notice much of a difference in symptoms when it comes to recovering

[Laura5 in reply to Nathan12345]

What do you mean by psychosis? Can you describe it?

[Nathan12345 in reply to Laura5]

Laura5 it's kind of hard to explain really but it feels like the outside world is slowly fading away and i'm losing grip with reality when i'm focusing on something whether it being a conversation, a film or anything, when this happens i have a really bad time remembering what was said or whats happened and take in information, i'm not aware of my surroundings

i used to get this atleast everyday but it's not so bad now, it happens still but not as often