No B12 injections - nothing - for one month due to Covid.
Eventually had a shot end of April, no effect so asked for a loading shot. Refused but blood test ordered.
B12 level just over 900. No feedback from surgery for a month. Called to ask to discuss test result. Eventually spoke to a different doctor who ordered more blood tests.
B12 level exactly the same as the one the month before.
Soon, I have another telephone consultation with a doctor.
Before that consultation, has anyone any idea why the B12 is the same after a month? Is it just sitting there but I can't use it or do I have plenty and don't need the injections?
I think the latter is unlikely as I have most of the symptoms and triggers and was depressed - for the first time ever - and almost suicidal during lockdown with no access to B12.
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Cerura
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It takes a long time to leave your system. Some csnt be used anyhow as 'inactive' Once on injections numbers are not a good guide and shoukd not be used to withhold treatment.
9 months is a long time though having read your edit!!
I think in the BSH guidelines not to test when on Injections
It should be on Symptoms s and response to b12.
Why dud they put on on b12 injections?
Usually yiu have PA or an absorbtiin problem. So on them for life.
I was told that . I Hope its on my notes.
It mat well be on yours. ?
I find writing more effectively as csnt be ignored and scanned on your notes.
Keep it brief.
State your symptoms. And when they started off injections
I don't know why my B12 was teated. Possibly as the result of a bowel resection. My brain doesn't seem to work properly these days!
I was just called and asked to attend for an injection as the last blood test was low. That was it and I was then jabbed every 12 weeks as I was told that was the protocol. In my total ignorance, I didn't question it and just trotted along for the quarterly jab.
There was a definite tailing off and I gradually found things more and more tiring with symptoms worsening. I was OK but only just. After nine months of not having any B12, I was barely functioning. That was when I started to do my research, found and joined the PAS and realised just how little I knew.
I have a telephone conversation with a doctor in ten days but, Thanks to the PAS and this Forum, I am much more informed. I look forward to the conversation!
I do sympathise. I can't offer much else but there is lots of good advice on this Forum. I think I would be changing my doctor but that is easier said than done. Good luck.
Some surgery can remove internal parts that are necessary for healthy B12 maintenance. For those patients, then, lifelong B12 injections are vital in order to function. Worth following up exactly what was removed to find out whether this is true for you, but sounds quite possible.
Part/all of the ileum being removed would affect B12 absorption in this way. Also reduction of the stomach- such as is performed in gastric bypass surgery. As you can tell, biology not my strong point, but there are some good videos that explain B12 process better (with useful diagrams) on the Pernicious Anaemia Society's website.
The fact that you were barely functioning should be sufficient reason for reinstating injections. If you have internal parts removed that would prevent/ significantly reduce your intrinsic factor production, you cannot have your injections stopped -and there is no earthly reason for testing your B12 levels.
Hope you can get this sorted out once and for all - let us know in ten days !
I have just had a B12 injection. Too early to tell how effective it will be! Nine months nothing, one jab and then six weeks later one more. I am hopeful of huge improvement very soon.Then nurse administering the jab said that as my B12 level remained unchanged over six weeks, it means that I have Pernicious Anaemia? Is that right? I thought I just had low B12.
It still sounds like they have not got much of a clue to me about what they are doing or going to do.Not a big ask - and such an impact on lives.
Having/ not having pernicious anaemia: if you have an Intrinsic Factor antibody test and you get a positive result, you definitely have PA. If your test result is negative, you can still have PA, since 40-60% of those with PA test negative. Because GPs don't seem aware of that they will rely on the one test result, which only gives you a 50-50 chance of a diagnosis then, even if you definitely have PA. How d'you like them odds ?
Yes, me neither.
Methylmalonic acid (MMA) links up with active B12 - so if short of that, MMA can build up in the bloodstream. This would be an indication that you are still B12 deficient, but not why. MMA can also be high if you have renal problems or small intestine bacterial overgrowth (SIBO)- but these can be ruled out with tests.
If it does turn out that the operation you had means that you need B12 for life, they really should stop testing your B12 and just give it to you. If you do have PA, the same is true.
Perhaps the GP can shed more light on this, and explain what is on your record -and why.
Return of/ worsening symptoms should be more important than testing serum B12 (active and inactive mixed)- especially any neurological symptoms.
I'd have a look at the symptoms list on Pernicious Anaemia Society's website if not sure.
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