Can anyone advise me re B12 levels please?

[airforsharon]

Hi, my b12 level was 130 last summer and I was given a course of B12 jabs - 5 over a 2 week period. Two weeks ago (so 8 months after the jabs) I was tested again and my level is now 282. When I rang to ask for the result the receptionist said it was noted as fine and 'no further action needed.'

I'm puzzled because when I had the jabs the nurse explained they should push my level up to 400-500 with luck, and I would then hopefully maintain that. So while 282 is better than it was, it still seems low (low-ish?). I'm still having spells of feeling very tired, and frequent pins and needles in my hands. I have hypothyroidism, but it's 'only just' underactive so i'm not having treatment for that.

Should I book in for a chat with the GP now, or wait and see if I start to feel any worse? And if my level has dropped again, does that mean I have pernicious anaemia? (GP hasn't mentioned that as a possible).

[Pleasemrstweedie]

Oh lordy! What a mess!

As far as I am aware, B12 jabs should be for life. If your levels are low before jabs, and you stop them, they will drop again, which seems to be what is happening to you. Also 500 is still way too low. You should be aiming for at least the top of your lab range and probably higher. Have you been checked for intrinsic factor? Really, your doc should be checking whether you actually have pernicious anaemia, which is autoimmune in origin and often goes hand in hand with autoimmune thyroiditis (Hashimoto’s Disease). The pins and needles in your hands count as a neurological symptom, so you really need to go back and tackle your GP about this.

Being slightly hypothyroid is like being slightly pregnant – either you are or you are not and delaying treatment will only make you miserable. What is the justification for not treating?

[fireandicecubes]

I have B12 injections as I've had bowel surgery & can't absorb it from my food. As pp said I was always told that if you need the loading doses you'll then need 3 monthly injections for life. I would go back to the gp & ask for clarification. 282 is at the very bottom of the normal range so it's no wonder you don't feel any better.

[airforsharon]

Ah ok, thank you both!
Re the thyroid - my GP (who is fab and I have no complaints about her at all) said she would prefer to hold off treatment as it's borderline so not causing much trouble, and once I start medication i'd be on it for good and possibly have other problems relating to it. I'm fine with that, and tbh I do think it's the B12 (well lack of) that is my main issue.
Re intrinsic factor, that's a good question I honestly don't know. She sent me for 'belt and braces' bloods last summer as I felt so shocking - that picked up the B12 level but intrinsic factor wasn't mentioned - would that be another, separate test?

I will ring the GP and ask to see her again, thanks.

[Eatingcheeseontoast]

B12 shots aren't necessarily for life. I have trouble absorbing B12 but I don't have pernicious anaemia.

So I had a set of shots a few years ago when it was amazingly low (dizzy, wanting to crawl under my desk and sleep etc). And I top up with sublingual B12 - every day for a while - and now just when I remember as my levels are back to normal.

Other people will need the injections for life.

[VLCos]

My level is 190 I was told try a supplement from a health shop !

[airforsharon]

Blimey VL really? The one thing i'm clear on (at least I think!) is if it gets that low, oral supplements are useless. I'm less clear on whether the inability to absorb it is definitely a long term thing and/or pernicious anaemia.

[VLCos]

Yeah because they said all the blood counts are fine as well as thyroid counts and all I was experiencing was tiredness. If I get pins and needles to go back. They are retesting in 3 months !

[airforsharon]

Hmm I wonder then if having a buggered thyroid means pernicious anaemia is more likely? I have pins and needles quite badly at times so I will make another GP appointment. I have Googled but there's a huge amount of info and so many symptoms are also linked to other conditions.....impossible to self diagnose I think.

I'll keep my (very tingly!) fingers crossed that your next blood results are good.

[VLCos]

Aww thank you.
Definitely go back they could easily test you for pernicious anaemia. At least then you know one way or another !

[MegGriffin]

Mine was 68 last August, I had 6 loading doses and now every twelve weeks.

[Bebraveagain]

Have your antibodies been checked for Hashimotos thyroid disease? Theres evidence that treating a borderline patient slows further deterioration of the thyroid. If you have symptoms, treatment should be tried especially if TSH is over 2 and T4 is at the bottom of the range.

[Bebraveagain]

And Hashimotos and PA are autoimmune diseases. Once you have one, you have a higher chance of developing another autoimmune disease.