Anyone with experience of B12 and Vit D deficiency?

[DrMidgeryMargery]

I went to the doctors last week before I felt so exhausted I could barely function. I’ve been on B12 injections every 12 weeks for at least a year (can’t remember when I started them), I take iron, folic acid and extra B12 in tablets. GP sent me for a blood test and I phoned to see if they had come back today. The person on the phone said they were back and my B12 and vitamin D were low and to make an appointment, which I have.

But until then, I wondered if anyone else has had this and what made you better? I really thought the B12 injections would be the answer to everything, but it’s still showing as low and I still feel like shit. I haven’t got the details of the levels as it was just a brief conversation.

I'm going through something similar and it's awful.

I was diagnosed with a B12 deficiency in 2016 (along with anaemia and a Vitamin D deficiency).

My B12 had been 200ng/L. This April, my GP said that my levels were normal and that I wouldn't need further treatment. I've slowly become more unwell over the last seven months to the point of being almost housebound - with horrendous exhaustion, tingling in my hands and feet, chest pain, muscle weakness, etc.

I recognised the symptoms (terrified by them, to be honest) and began taking Jarrow B12 supplements. They're 5000mg. I took them for four weeks and got to the point where I had enough strength to get to my GP for blood tests.

My B12 was 1091ng/L in the tests and so my doctor is saying that I do not have a deficiency. She can't say whether the 5000mg supplements would have affected the results, whether they're masking a deficiency, etc.

I'm not sure where to go with things next, but it's heartbreaking to feel like life is passing by and I can't live or enjoy it.

Has your GP explained why your levels are so low (Celiac Disease, pernicious anaemic, etc)?

Oh my god LightBe, you poor thing. I thought I felt bad, but you sound awful. You really have my sympathies and I hope something gets sorted for you. I find it hard to push for things because I’m on a lot of other medication and I feel like a hypochondriac adding more things to the list.

I have similar symptoms - tingly hands and feet, exhausted, weak (my arms get tired washing my hair!) and occasionally feel like my heart skips a beat. I manage to convince myself I’m having a heart attack every time it happens.

No I haven’t been told the cause, I’ll ask at my appointment. I’m vegetarian but I’ve always eaten well and taken supplements but it’s obviously making little difference.

Is it possible for you to see a different GP? Sometimes a good one makes all the difference and I feel I’ve been really lucky with mine so far.

I was the same. Doctors were trying to diagnose me with chronic fatigue syndrome as all except my vit D levels were in range 🙄 I knew it was something more and managed to find a doctor who specialises in chronic fatigue syndrome. Between us we discovered that I actually had low stomach acid, which was stopping me absorbing anything. Having been off for 7 months with it and being barely able to function, within 4 weeks of treatment I was back at work and back in full time in 2 months.

Google the baking soda stomach acid test, as it’s a really quick cheap and simple test you can carry out at home. The downside though is because it’s not recognised by the NHS as a problem, I can’t get a prescription for the tablets so I have to self fund my treatment (that my doctor advised I took and that actually fixed me!). I do think a lot more people have been misdiagnosed with other conditions because they don’t recognise this though.

Oh and you need to be 3-4 months (I can’t remwmber exactly) clear of B12 supplementation before you get an accurate result, so any tests you’ve had will be giving you a false reading.