B12 maintenance

[Jacqui1968]

Hi, I've been self-injecting for almost a year. My GP knows and just "advised" to try spacing them a bit further apart if I could. So I currently manage to go roughly 4-6 wks between. GP has been keeping an eye on bloods, as I was iron deficient and now have hyperthyroidism, and my B12 is permanently showing over 2000. Just wondering if this is ok? My symptoms of B12D and hyper are virtually the same, but a B12 dose always makes me feel much better. I suppose I'm just worried that I may be masking other problems?

Your opinions would be much appreciated. Thankyou 😊

[Gambit62 Administrator]

unravelling hypothyroidism and B12 symptoms is extremely difficult

Having B12 permanently over 2000 (ie over the measurable range for your lab) isn't that unusual post loading shots - there are a number on this forum in that position - including myself. If your symptoms respond to B12 then it's probably B12 - personally more than 24 hours and I'm starting to get cranky but I'm at the high end of frequency. If your symptoms are improved by more frequent B12 then that would suggest you need more frequent B12 ... but getting levo doses right is really difficult as well. If the symptoms don't respond to B12 then it would suggest it is the hashi's that is responsible. And yes, another auto-immune if responds to neither is a possibility.

[Jacqui1968 in reply to Gambit62]

Thankyou. That's reassuring re the B12 levels. So I'll carry on playing by ear and listening to my body. Could I ask your opinion on the AIP diet? I eat fairly clean anyway but I'm considering giving it a go - just to give my body a bit more of a chance

[Gambit62 Administrator in reply to Jacqui1968]

personally - think it can be a little faddy - but it doesn't hurt to go through a properly designed protocol to rule out specific allergens. However, some proponents do seem to be perpetuating urban myths (eg leaky gut).

[Jacqui1968 in reply to Gambit62]

Thankyou 👍

[mountainice in reply to Gambit62]

I leaky gut not a real thing? I thought I had read about it, not just people on forums, but I couldn't tell you where now.

[Gambit62 Administrator in reply to mountainice]

the scientist who first theorised about leaky gut later came to the conclusion that it wasn't a viable hypothesis but the myth is perpetuated out there.

[Midnight_Voice in reply to Gambit62]

Jacqui1968 said ‘hyper’ - too much - which is usually treated by a partial thyroidectomy, not ‘hypo’ - too little - for which we take levo.

I think she means hypo, but it is important for her to clarify here. Jacqui1968, can you confirm which it is?

[Gambit62 Administrator in reply to Midnight_Voice]

Thanks Midnight_Voice - hyper would be Graves rather than hashis.

[Jacqui1968 in reply to Midnight_Voice]

I'm hyper, graves is suspected bit not confirmed. Endo appointment not til November 🙈

[deniseinmilden]

If you need B12 then you need it and as it is required to maintain the functioning of all your body's cells its important that you get enough for you to stay as symptom free as possible to stop other damage occurring.

Don't worry too much about overdoing it - some people have been doing daily jabs for decades to good effect and there are some who need two jabs a day.

I think most people who SI stay well over the >2000 level but need to for further damage prevention.

You are extremely unlikely to give yourself more jabs than you need - if it doesn't make a positive difference then you're hardly going to stick a needle in yourself for the fun of it!! 😁

[Jacqui1968 in reply to deniseinmilden]

That's exactly what I told my GP! I'm very lucky that he does listen to me and I think he knows me well enough now to know that I'm doing everything possible to help myself and wouldn't do it unnecessarily. Think I was just having a wobble yesterday and questioning myself. Thankyou for replying 😊

[deniseinmilden in reply to Jacqui1968]

Wobble, what's that??! 😁 x

Good luck with working out what suits you.

A broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron, ideally from your diet will probably help, as could extra vitamin D, to keep the B12 working optimally.

[Jacqui1968 in reply to deniseinmilden]

😂 I'm constantly looking at my diet 🙈 I lost nearly 3 stone, due to thyroid, (while eating SO much due to insatiable appetite!) but it's starting to creep back on again already. So need to address it again before it gets out of control!

[deniseinmilden in reply to Jacqui1968]

It's really hard to get the balance right when someone keeps moving the tightrope, isn't it!

Good luck! x

[Jacqui1968 in reply to deniseinmilden]

Keeps us on our toes I suppose!😂

Thanks for the replies 😊

[Mashie44 in reply to Jacqui1968]

i missed this at the time but -- am just kicking myself for listening to GP who says I should inject less often. Once a week and I'm fine but I keep stretching it and then keeling over. Turned up to a job interview on Tuesday and had to ask for biscuits then water then a sandwich as was barely able to stand ... and even so was still feeling as if wallowing on a yacht 2 hours later. Staggered home (2 hour journey), had a jab and was fine. MUST LEARN TO TRUST MYSELF AND NOT THE GP..... the advise is flawed - don't know why but it is. Go with what you feel. If an injection helps then do it, it does no harm. (PS I got the job!)