Oral cyanocobalamin and test results - Pernicious Anaemi...

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Oral cyanocobalamin and test results

Breq42 profile image
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Hi all--new person (UK-based) here and I'm a bit flustered at the moment. Apologies for the long post.

For background: I'm in my mid-30s and have an omnivorous diet. I have dxed hypothyroidism that's controlled by meds, a mild case of IBS, a grab-bag of psych issues, and a non-immediate but direct family history of PA/B12d. In late March/early April, I'd gone into my GP as I'd been having heart palpitations and dizziness. As I have hypothyroidism, she suggested checking my blood for those levels as well as anaemia.

Out of the blue, it turns out both my B12 and folate levels were deficient (145 ng/l on the B12; 2.9 ug/l, iirc, on the folate). The GP advised she suspected PA, but that local NHS trust protocol requires a month-long trial run of 150 mcg/day of cyanocobalamin tablets to see if patients have absorption issues. (I've checked, though the local trust are cagey about it, and this is indeed the protocol.)

I took them dutifully, as well as the folic acid I was given, but if anything I've felt even worse in the last six weeks since I started--I'm absolutely knackered and foggy most days, and the palpitations and dizziness have not gone away. I finished up the month, got tested again, and got my results back today.

I'm back in the normal range, apparently. But I still feel physically awful, and the 'worse' feeling has continued .

I guess I'm just trying to understand what's reasonable to assume here, if this could be

- just 'feeling worse before you feel better'

- a false positive affected by the folic acid treatment

- skewed by the supplemental oral treatment

I've done my reading here and elsewhere, and I know supplements can lead to false indications, but I'd thought that might just be the higher dosages. I also read that folic acid shouldn't be given without B12 treatment to folk with PA, as it can cause issues. It seemed slightly counterintuitive to me to give folic acid alongside B12 supplement designed to fail in people with absorption issues, but by the time I figured that out, I'd been taking it for two weeks.

I don't have the figures for my new tests as reception only give the outcomes. I've got an appointment to follow up, as I'll definitely at least need a supplement regimen, but they are absolutely slammed at the moment and that's not until 4 June. (Time to make a plan, I guess.)

Any guidance would be appreciated, with thanks! My family history with PA is pretty tragic (it took a direct ancestor's life in the pre-treatment 1930s), and I'm conscious that there's frequent comorbidity with hypothyroidism and IBS, so I am very keen not to let this fall by the wayside. I just need to know if it's reasonable for me to be pushing the envelope, and if so, what clinical evidence I should bring to the table. Thank you!

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Breq42 profile image
Breq42

Thanks, beginner1! They did give me a printout of my original test, I just haven't had these (they only came back today).

I'm in Glasgow (so NHSGGC). It's odd, as the guidelines elsewhere in Scotland are in line with NICE, from what I can see via searching.

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