Yipee. Just got back from seeing my GP. I went with a list of symptoms that haven't improved since my loading doses 12 weeks ago. He was interested in the BMJ review paper I gave him and decided that my neurological symptoms had got worst since I was first diagnosed.
He's agreed with me that I need tests for MMA and holotranscobalamin as well as thyroid hormones. He's going to refer me to a haematologist and he's given me prescriptions for Gabapentin (for the needles in my toes that keep me awake) and for Hydroxocobalamin ampoules sufficient for me to self-inject once per week.
There are some doctors out there willing to listen and learn (he didn't know that active B12 tests were available). I feel so lucky to have one.
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fbirder
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Well done! I am convinced presenting a piece of paper makes the symptoms seem more real, somehow. My GP said it was being more 'scientific' keeping a record of my body's reactions. I encourage everyone to present written evidence to support their case.
fbirder : realise this is a very old post but it has confused me somewhat, from reading other posts I thought MMA and HoloTC tests were not of much use once loading doses have started but it seems you had yours after loading doses.....can you help me understand??
There is something called 'functional' B12 deficiency. B12 in the blood is bound to one of two proteins - transcobalamin and haptocorrin. Only that bound to transcobalamin (active B12) can be absorbed into the cell.
If active B12 is low and serum B12 is high that would explain why I have symptoms. But I never had that test.
What I have had (twice) are MMA and hCys tests. Both are normal. Which is what you'd expect from somebody sticking loads of B12 in them.
Why I still have symptoms - nobody knows. But at least my GP agrees with treating symptoms, not numbers.
Right think I have got it.....so MMA and hCys tests would be expected to show normal in someone who is receiving B12 injections. Is HoloTC the active b12 test then - which would show low if you had functional b12 deficiency? Or have I just lost the plot??
Lucky you with a doctor treating symptoms not numbers!
Yes, both MMA and hCys should be low in people with enough B12 in their cells.
Yes, holoTC is 'activeB12.
In functional deficiency one of MMA and/or hCys should be high. Active B12 may be low or not. It all depends on the cause of the functional deficiency.
Following this thread as my GP is now wanting to work with me and do diagnostic tests, starting with the antibody tests and a repeat serum (but doesn't really know much about it and I don't know enough). Am having frequent injections.
I know you've just explained and I'm being a bit slow, but could I confirm: if I have MMA and hCys tests now, if the B12 treatment is working they would both be low. If it isn't, one or both results would be high.
BUT if hCys was high, could that mean there was a different cause to B12 def?
If hCys level was high before treatment (mine was, didn't have MMA) and it was actually caused by a different issue, could the B12 lower it anyway thereby masking the original issue?
And, if there is an apparent functional deficiency, would there be more tests/investigations for that or does the cause of that always remain unknown? And how can that be treated?
Arghhhh - Sorry, too many questions.
It would be really helpful to clarify at this stage though. Or point me at a link.
Somewhat related, I think I have read there are some diseases (anecdotally) helped by B12 even when low B12 is not the cause. But clearly not those which affect MMA and hCys.
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Diagnosed with pernicious anemia by one doctor, then told by another I don’t have it?
Another one bites the dust !
