I’m feeling baffled by these results. Any insights welcomed. Feels like I’m just leaking the b12 out again….
Active b12
June 2021 177 after loading (The out of the top of the range red dot)
June 2023 43 with Bi monthly si since June 21 after the loading.
March 2024 45.6 after 2 weeks of every other day si loading after June 2023 result, then monthly si.
Pic attached shows all results going back to 2018 with various peaks and troughs.
Also I’m considering letting the levels drop into the red in order to get an nhs diagnosis. Not sure I can hold out as I know how unwell I’ll start to feel.
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Laundretta
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Hi, thanks for the reply. Last couple of weeks I’ve had the start of symptom creep. Fatigue, achy bones and sore thumb joints. Hence the test. I’ve also got auto immune under active thyroid - my t3 and 4 levels are ok though. Ferratin is also currently low (thank you to menopause and fibroids)
So there’s the ‘trying to work out which symptom is due to what’ game to play, but I was surprised to find the b12 low.
When I went to my annual check up in June, the GP said I’d have to fit into the nhs mould to be diagnosed and nhs treated - I’d have to let the bloodworks show deficiency and stop si. I’m considering letting it happen so I can at least get it on my record. Having said that I was an emotional wreck exhausted brain fog mess in 2018 (the first red dot on the graph) and I’m actually a bit scared to go back to that.
I’m grateful for the new nhs b12 guidance though, it might make the path a little easier.
I went round the nhs wheel in 2018 with this but the GP would only look at total b12, which was just ‘in range’ and I tested negative for the IFab test. I didn’t have obvious neuropathy or a high MCV so as far as he was concerned, case closed.. I felt so ill and there he was saying there nothing wrong with you. So I started to si with immediate improvements and they have been aware, and it’s noted on my records that I si…. I do feel it’s more of a ‘crazy lady hypochondriac warning’
"I didn’t have obvious neuropathy or a high MCV so as far as he was concerned, case closed.."
Your GP had probably looked for enlarged red blood cells (macrocytosis) when he mentioned MCV. High MCV is suggestive of macrocytosis.
B12 deficiency (and folate deficiency) can lead to red blood cells that are larger than normal.
Iron deficiency can lead to red blood cells that are smaller than normal (microcytosis).
A person who has B12 deficiency (and/or folate deficiency) with iron deficiency may appear to have normal sized red blood cells, with normal MCV on Full Blood Count FBC because the effects of iron deficiency mask the effects of B12 deficiency (and/or folate deficiency).
You mention low ferritin so I wonder if this could have masked the effects of low B12.
What's your folate level like?
I do feel it’s more of a ‘crazy lady hypochondriac warning’
I was diagnosed with hypochondria.....and a load of other rubbish labels, still feel angry about that years afterwards.
I feel we have a right to be concerned when our bodies and brains no longer work properly.
"I’m grateful for the new nhs b12 guidance"
Have you read it thoroughly? I have some reservations..I think there's too much emphasis on using oral B12... but there are some good bits.
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