I don’t mean to sound ungrateful but.....

[Knitting_Jenny]

I’m wondering if anyone has a similar curiosity as me?

Background- like most here it took a very long time for my doctors to figure out that I have b12 deficiency which was never ‘cured’ by a recommended loading dose over 2 weeks and then a few 3 monthly jabs. My levels just yo yo’d. Fast forward 5 years, my doctor is treating me every 8 weeks. Yes I’m a lucky lucky lady.

My ask is, my b12 levels should be through the roof by now surely? But my most recent results put me at the 600 mark. I have been treated every 8 weeks for 6 months now. And before then for a year at every 12 weeks. My GP agreed to treat me at every 8 weeks because I was still falling off the cliff way before my next injection and my b12 results showed exactly that.

I have a review with my GP today so will be asking if he can think of reasons why, even though we’re dosing me sooner, my levels aren’t awesome.

I thought I would reach out to you guys to see if anyone is similar?

P.s my GP has done tests for PA but the results came back to the contrary, but with a family history of it and other autoimmune he is content to treat me as PA.

[clivealive Forum Support]

Hi Knitting_Jenny are your two monthly injections sufficient to control your symptoms?

Has your Folate level been checked or are you supplementing with folic acid?

There are many members of this community who have to self inject more frequently than the guidelines "allow".

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Knitting_Jenny in reply to clivealive]

Hi,

All my levels have been checked and except my haemoglobin levels being slightly above the norm (which I’m told is a very good thing), I am all good.

My 8 weekly jabs have been working fine, but recently I have upped my training regime to 3 times a week (I have to keep fit for my job) so I’m thinking the wall I have hit is normal fatigue rather than b12 fatigue.

I still find I have issues if I have to think too much, as in I just can’t think or remember very well but I’ve accepted it (almost) as that being who I am now.

I’m just curious as to where all my b12 is going? You should see my GP’s graph of my blood results - up and down quite sharply. I cannot self prescribe, and to be honest will not (being in the military the doctors can get a little funny with you) Haematology are not interested and Gastro will see me in September. So until then it’s more waiting I suppose for answers.

Thank you for your message

[Gambit62 Administrator]

levels are astronomic after the injection but your kideys are quite efficient at removing excess B12 (ie B12 that isn't bound to heptacorin on TC2 - the proteins that allow it to be stored in the liver or pass into your cells respectively) - there is quite a lot of variation in how quickly kidneys remove the 'excess' and how much other B12 is in your blood but you are probably at the fast end of B12 removal.

Basically serum B12 isn't a test that can be used to manage B12 absorption problems (though it's useful for identifying them). You need to go by symptoms.

[Knitting_Jenny in reply to Gambit62]

Thank you