Help!
I've just had my third loading injection and I'm worse than I've ever been. My original result 141ng/l and I've started having occasional gap in my short term memory, and can't walk 300m without thinking I'm going to faint. The SpO2 thing on my phone said 82% saturation but I don't know how accurate it is.
Is this normal or should I worry?
Yesterday, it was confirmed that I don't have PA so now they don't know where my B12 has gone. Waiting for a haematologist.....
a) I presume that 'you don't have PA' is based on an IFA turning up negative - unfortunately this would be an incorrect conclusion. IFA gives false negatives 40-60% of the time - its value as a test is that it isn't prone to false positives - so whilst a positive is good evidence that you do have PA a negative is a long way from demonstrating that you don't have PA.
b) On the SpO2 - get that checked out by a pharmacist or a nurse - though agree that a phone app may well not be accurate - but it could be an indication that you have a chest infection.
c) B12 shots affect people quite differently - and for some people it does mean that they feel quote out of it for a while. Loading shots can also be a period in which your immune system and a lot of other systems that haven't been working properly kick back in and can almost go into overdrive for a while, so aches and pains increasing and all the symptoms that you might associate with having an infection like runny nose and possibly a slightly raised temperature - can get a bit worse for a while.
d) if you had anaemia then that will take about 3+ months to correct now that you have enough B12 because new red blood cells will only be made as old blood cells 'wear out' and the average 'life' of a red blood cell is 4 months.
It is also possible for potassium to become depleted when you start on loading doses if you had anaemia so probably worth mentioning the dizziness to nurse next time you have a loading shot and asking if they could check your potassium levels ... ditto for your folate levels if they were on the low side before you started on loading shots
Thanks for your prompt response. The No PA result is based on parietal cell antibody analysis.
I'm back for No 4 tomorrow so I'll have a chat with my nurse.
It'll be interesting to see what the haemotologist says at the end of October.
interesting- GPA isn't a test recommended by WHO or in the UK because of its tendency to produce false positives - so probably is an indicator that it isn't PA
other potential causes of absorption problems are coeliacs, crohn's, h pylori infection and a whole raft of drug interactions. Unlikely that the haemo will have much to suggest in terms of cause of the problem - and many of us just get left with knowing we have an absorption problem - the most likely of which is PA but nothing further. most absorption problems aren't actually treatable - h pylori is - and that means that you will probably need injections for life though the guidelines aren't necessarily as clear as they could be on that, leading some GPs to conclude that injections aren't needed for life if it isn't PA ... though some don't even get that far.
Hope it all goes smoothly.
Hi Davejtuk It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with. I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
As Gambit62 says if you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.
As ever, thanls to all for your guidance.
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