Hmmm Serum B12 not low enough

[Dfthbhjj]

Right so I have just had my latest serum B12 result which I was hoping would now be on the range considered deficient so I could get my injections reinstated. Unfortunately it's not it's 501 ng/l, but it's gone down considerably since they last tested it. I've now been about four months since my last injection, and I feel worse than I have for the last year or so, sleeping all the time, numbness bad, shortness of breath etc.

I know others have said that the serum B12 level isn't useful if on injections, but can anyone explain to me how it works with regards to the functional B12 level vs serum b12? It looks like the oral supplements aren't sustaining the serum b12 level at the level it was after my last injection, but it still has a fair way to go before it reaches deficienct levels again. So have I understood this correctly that B12 is stored but that doesn't mean that all of this B12 is available for use? Or is it just that B12 is no longer the problem and something else is causing my symptoms? I'm pretty confused to be honest and kind of fed up of not feeling great. I intend to start self injecting, I guess I can't do any harm by doing so, and hopefully it will help. Anyway any advice would be appreciated thanks.

[wedgewood]

I think that you will find self-injecting very satisfactory . It’s great being in control and good not to spend time in surgery waiting rooms ( especially in the ‘flu season) At about £2.00’ all inclusive cost for an injection , it is not expensive. Better to self inject than to suffer the numbness , exhaustion , shortness of breath etc which you now have . Also the possibility of getting an irreversible symptom, whilst waiting for your B12 levels to sink low enough for you to “ qualify “ for the return of NHS injections .

I have sustained an irreversible symptom which does impact my life . Don’t let it happen to you . You can do no harm by self injecting. Best wishes .

[Gambit62 Administrator]

serumB12 just tells you about levels in your blood. It doesn't tell you what is happening with B12 in your cells. MMA and homocysteine are indirect tests that can indicate what is happening in two of the processes that go on in your cells but as B12 is used by a lot of processes it isn't the full picture. Also as they are indirect measures you would need to rule out other causes for elevated measures in the two tests to prove it is B12.

Basically there is a lot that isn't known about how B12 works.

The normal range applies where injections haven't been administered so can't really be used in the same way afterwards.

[Nackapan]

Do write a short letter to your surgery Copy in the practice Manager.

1. Guidelines state testing b12 once had injections not recommended .(BNF)

2. Why wait until you ill again to prove you need B12

3. NICE guidelines state to treat symptoms .

Then just put .

You want your B12 injections reinstated as no good reason has been given to stop them.

Health professionals can get information from The Pernicious Anaemia Society .

State you a member if you are

Meanwhile self treat until sorted.

The letter will be put on your medical record

[Sleepybunny]

Hi,

I left some links that might be useful on your previous thread.

healthunlocked.com/pasoc/po...

[Dfthbhjj]

Thanks everyone. I've just realised the oral supplements she gave me are only 50mcg which are the recommended for diet related deficiency. There's no way I have a diet related deficiency, I practically a carnivore, I eat loads of meat, fish cheese, probably too much of these things. I told her this at my last appointment. I think the only sensible thing is to start self injections. I had oral supplements when they first found me to be deficient and my serum b12 went down. I think in another 6 months time I will have a deficient serum B12 level again, but then I'll have to deal with the symptoms in the meantime. I give up with the doctor and can't be bothered with the hassle. She only gave me 50 days supply of the tablets and another tablet for nerve pain she recently prescribed and didn't put them on repeats. I tried to make an appointment but the first one I could get was a month and a half away, so I rang and asked it I could have some more but first I have to see their pharmacist before I can have them. Then at the same time I was told I have to have an asthma review (they send a questionnaire every so often I have to answer) it always says make an appointment for an asthma review but every time in the past when I have done so all they say is I'm on the highest doses of all inhalers so nothing they can do, which I'm sure will be what happens this time. Then they messaged me saying my doctors appointment that was after Christmas with the only GP available has been changed to one with my doctor in the same week. So the week after next I have to go to the doctor's on Monday Tuesday and Wednesday, it's like there's no common sense whatsoever all these pointless appointments and nothing will come out of any of them.

[Hockey_player in reply to Dfthbhjj]

Self-injecting is the way to take things into your own hands! But if you want supplemental B12, try 1000mcg sublingual.

[Nackapan in reply to Dfthbhjj]

I was told to have 50mcg 3× a day in s bid tk reduce my b12 injections. Theh dung do x thing for me.

So upoec thd fisd yo 3000 still nothing.

All on my health record.

Not doing that agsin.

Just write snd say you've tried the trial of oral B12 snd they do not help you.

State your deficiency is not dietary so you need injections ax recommended by Nice guidelines.

[Dfthbhjj]

Yes it seems she's decided that my problem must be diet related, even though I have told her my diet is rich in B12 containing foods, so she has basically completely ignored me, I think she's very judgemental to be honest, I'm poor so therefore must have a bad diet low in meat, cheese and fish I think is the assumption she has made. There are plenty of ways to eat well on a low budget but there you go. I know I had a negative intrinsic factor test but as others had says this misses many people with PA. It's like that one test is definitive as far as she is concerned, surely you can have absorbtion issues without having PA?