B12 deficiency, injections and help with blood test results

[BlackInk]

Hello, I wondered whether there's anyone out there with knowledge of B12 deficiency?

I've been feeling rubbish with loads of strange symptoms for at least a couple of years.

My ferritin is always lowish - hovering around 15-18 ug/L.

My folate was 11 ug/L in January, 10 in June and now 9.

My B12 was 166 ug/L in January, 161 in June and now 122.

The above is despite taking fairly high levels of supplements since January.

My GP called me last night about my B12 level (he's marked everything else as normal) and said I need to have 5 loading doses of B12 over the next few weeks, then retest B12 in 6 months to see whether it has fallen again.

I tested negative for Intrinsic Factor in June, so he said I don't have pernicious anemia - even though the blood report itself says that a negative IF doesn't rule out PA. I've had a positive ANA result previously, but GP hasn't flagged anything else as a concern. I've noticed that a lot of my results are borderline, just within range.

Should I push for referral to a haematologist or is my GP doing what he should be doing? Would treatment be the same whether I have PA or not?

Many thanks to anyone who gets through this :)

Have you been checked for coeliac disease or do you have any steroids or anything?

Injections are the treatment whether it is PA or not so it's good that they are offering this, but it would be helpful if you could rule out PA. Intrinsic Factor alone isn't conclusive, it can return a false negative. My PA test (private) consisted of Active B12, homocysteine, Methylmalonic Acid and Intrinsic Factor which was more conclusive.

Your results are low if you're also taking supplements.

Your ferritin needs to be a lot higher too.

Thanks for your reply AGHHHH

I've tested negative for coeliac and the only medication I've had in the past couple of years has been a short course of Omeprazole and HRT patches - GPs thought my symptoms were either menopause or indigestion related; they also prescribed anti-depressants, but I didn't take them.

I've been supplementing B12 at 500ug a day (most days) since about February and my diet is pretty good really.

Could I ask how you went about getting your private PA test? Was your NHS GP not willing to investigate? My GP is kind, but absolutely doesn't believe that a result that's just within the normal range could possibly indicate a problem.

Thanks again!

I had mine done via Blue Horizon at a Spire hospital :) cost a few hundred though, eek.

Medichecks are my goto now, but I don't think they do the full PA panel.

<a class="break-all" href="https://www.google.co.uk/url?sa=t&source=web&rct=j&url=privatebloodtests.co.uk/private-blood-test-for-pernicious-anaemia-in-blood.html&ved=2ahUKEwiznsWxz4_eAhXjI8AKHSQSB7MQFjAAegQIAhAB&usg=AOvVaw3au2qCztYxlQ-XHlWNAX_B" rel="nofollow" target="_blank">www.google.co.uk/url?sa=t&source=web&rct=j&url=privatebloodtests.co.uk/private-blood-test-for-pernicious-anaemia-in-blood.html&ved=2ahUKEwiznsWxz4_eAhXjI8AKHSQSB7MQFjAAegQIAhAB&usg=AOvVaw3au2qCztYxlQ-XHlWNAX_B

Perhaps you could show the tests to your GP and say can you please test so I don't have to pay £300 needlessly?

Eeek! I think I will have to take a deep breath and ask my NHS GP as I can't really justify spending £300 of the treatment would be the same anyway. Thanks for the links - I might try emailing him as I lose my nerve face to face!

Yeah that's true. I think the NHS guidelines are 3 monthly injections for life for pernicious anaemia (though some feel they need them more frequently).

My GP wouldn't entertain a deficiency as I was just within normal rage but way below optimal, despite eating tons of animal products and taking supplements. So I bought a kit and self inject at home. Its so cheap.

Not sure if it's helped yet but my level was 180 and it can take a long time to reverse any symptoms.

Yeah that's true. I think the NHS guidelines are 3 monthly injections for life for pernicious anaemia (though some feel they need them more frequently).

My GP wouldn't entertain a deficiency as I was just within normal rage but way below optimal, despite eating tons of animal products and taking supplements. So I bought a kit and self inject at home. Its so cheap.

Not sure if it's helped yet but my level was 180 and it can take a long time to reverse any symptoms.

My GP declared that I didn't have b12 deficiency as my level was 400 and wasn't anemic as my hemoglobin were fine. Yet my mch level was very high indicating anemia which is usually related to a low b12. I then learned that the standard NHS test is not always reliable as indicate the total level in the blood but not what is absorbed.

In the end I gave up on my gp and ordered b12 and started to inject myself. I must have been bad because I had to do three loading dosages for three months before the benefits remained longer than a few days. I now need to inject once every 3 to 6 weeks.

I've given up on finding out what is causing it, I just inject when the symptoms - which I now recognise very distinctively- return and I'm fine with that. Testing now would require not injecting for at least 4 months and I'm not prepared to do that.

I definitely don't want to self-treat as I don't want to mask anything else that might be going on.

It's so frustrating though.

I first went to the doctor about feeling generally rubbish and having some odd symptoms (twitching, shaking, stomach trouble, periods stopped, etc.) over two years ago. My ferritin was very low in range then and my B12 was low out of range. They marked my results as normal and put everything down to early menopause or anxiety.

It was only in January last year that they suggested I take over the counter supplements. This advice was repeated in June when my B12 had fallen further, and again in July when it had fallen further still. It was only when I asked for access to my results a month or so ago that I realised and brought this up with the doctor. They retested again and B12 was 122 despite taking high levels of supplements.

Doctors don't seem to believe that B12 deficiency is serious despite lots of information and guidelines on NHS and NICE websites.