When I take supplements they work for a few days and then stop working, if I swap to a different type of B12 supplement I feel good again for a few days and then have to swap again. I have been tested for H Pylori and it was negative, I also have parietal cell antibodies.
I don't know if I would have the same problem with the injections but I would like to try it. She says she can't give them to me as my levels are too high. My first test in Jan was just over 200 but I had been taking multivitamins which had B12 in. My next was in May and was 508, had been supplementing on and off. then I had one last week which was over 1000 and I had been supplementing a lot, 5000 a day. If I go a few days without taking any B12 the symptoms come back, fatigue, numbness, breathlessness, brain fog etc.
If I hadn't been supplementing my levels would have been low and she would have given me injections, but she says without a test result showing they are low she wouldn't be covered if something went wrong, like I had a reaction to the injections.
I tried not taking B12 for a couple of weeks to get an accurate test but it's so hard when it makes you feel so bad.
My doctor is trying to help me but admits she knows very little about B12 deficiency. She wants to refer me but isn't sure who I should see, so she is referring me to general medicine. As I keep finding out things and telling her, she has asked me if I can find someone local to us (in South East Wales) who is a specialist in B12 deficiency so she can refer me to them. Is there anyway I could find someone?
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Ktululady
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When you get the first injection - the surgery will monitor you for about a half hour for a reaction. If you've been supplementing with B12, any reaction will probably be the preservatives and not the B12.
GP should probably refer you to a hematologist.
Are you supplementing with Folic Acid as well? You may see your B12 levels drop faster as your B12 will be used more efficiently.
"My doctor said I have a lot of anti-bodies and seem to have some sort of auto-immune problem but she didn't know what it was as all the other blood tests were within the normal range (I had been supplementing B12 but she said it wouldn't affect the results)."
Your B12 test result was low before supplementing.
Its clear that GP knows very little about B12 def, but obviously suspects an autoimmune problem. As you probably know, researchers believe leaky gut/intestinal disease is the ground zero of autoimmune disease and thyroid/PA/B12 def. are often linked both ways. What many GPs consider normal B12 results are not, as "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml." - 'Could it be B12?', by Sally Pacholok and Dr J.J. Stuart.
It, therefore, looks as if you are not absorbing B12 -with PC and thyroid antibodies - and need further tests or simply a trial of injections, especially as you also have neurological symptoms which need to be treated without delay according to guidelines, regardless of test results.
BCSH guidelines:
"The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".
Here are some more links you may not have seen, which you could try emailing to your GP:
The above latest BMJ research document is supported by many research papers and has a useful summary. It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....
I hope all goes well but, if there is difficulty in getting treatment, you could ring the PAS - who would, I'm sure, help.
Has your doctor done an MMA test on you? Or you could ask to have the active B12 test done. Depending on results of either of those, your doctor may be able to cover her ass while treating you.
Edited to add: Sorry about the language, but the attitude that every possible liability has to be covered is really detrimental to the health of patients even if I do understand the point of view.
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