B12 Deficiency

[iloverobbrydon]

Hello!

I went to the doctors 3 months ago with some symptoms I have been having for a long time. They did a full blood test and it came back that I was deficient in B12. They put me on 50mg tablets which have not helped in the slightest.

I went back for more blood tests yesterday but I have heard that injections are actually better, as it may be that I can't absorb the B12 in tablet form. I have read up on it and heard that a lot of people self inject or get it done privately because their 3 monthly injections do not help as they aren't enough.

I have a few questions about this. First one is, I have heard that you should also supplement with other things such as folic acid. Is this true and how much should I take? I wasn't told that I was low in this so do I still take it? Also, if I self inject how do I know how many times to do it? I have heard about loading doses etc but I have no idea how much I would need. The doctors never gave me my results, so I don't exactly know how low I am but i'm just all a bit confused and overwhelmed with it atm and could use some advice from people that have this deficiency and especially if you self inject.

Thanks!

Hi, I too was found to be B12 deficient. After my results came back low, I was given an Intrinsic Factor test which tests for pernicious anemia. It came back negative but I was given the B12 loading doses by my GP surgery. I have a follow-up this week. I think my B12 deficiency is an absorption issue and not due to diet. If you haven't already, I'd request access to your medical records and then you can get a breakdown of your results. I joined a really good B12 deficiency group on Facebook and they looked at my results. I was low on folate and I know take 5mg daily of Folic Acid as this is needed for B12 to work properly.

How are you both getting on?
Recently found out im b12 deficient

Hi, I'm doing okay. I haven't felt a huge difference since getting the injections but I know it can take a while. My main issues are gut-related and just feeling tired all the time. I would love to know the cause behind the B12 deficiency.

Have you ever had your feretin checked. @Linzie79 ?

Have u ever had glandular fever ?

My b12 was over 800 - may 2022

Now 147

I had glandular fever in may2022..

When was yours tested b4 this when it was ok - anything happened in between?

Seems b12 issues can be common after glandular fever

I also have raised ca125
We currently dunno why
Just that its not ovarian cancer

@iloverobbrydon have you been tested for coeliac disease?

Hi, my B12 was 123. Ferritin was at the very low range, and my D3 was low too. I've never had glandular fever. I do have gut issues so thought it might be SIBO (small intestinal bacterial overgrowth) which can impede B12 absorption. My calprotectin level was slightly high but then a retest 2 weeks later came back normal. Negative for celiac too. I have no idea what could be causing my b12 deficiency. I only found out as I had lots of symptoms that pointed to perimenopause, but I had a near fainting episode and blurred vision, so the doctor ordered blood tests to rule things out.

Are you prescribed the folic acid? I wanted to take 5mg but my GP won't prescribe because my folate level was only borderline low. You don't seem to be able to buy that strength otc

I wasn't prescribed it by the GP. They never even mentioned it! I purchased it myself via amazon. The brand I got is Bioinnovations Pharmacal.

Your b12 isn't ace

As under 200 - have u been offered b12 injections ?
Nhs gp should offer you injection based on 123
Mines 147
If re test in 2 weeks is same - im getting injections

@Linzie79 whar was your feretin number - did u get offered iron iv?

I’m jumping in to ask questions please

how did you come to be diagnosed?

does anyone know if B12 deficiency can cause foods to taste salty?

is it ok to take B12 without being tested

Yes, I got the B12 loading injections (6 over two weeks).

I have prescription 4 high FA
Its because of my weight / bmi since glandular fever
You cannot get that dose without prescription

Higher folic acid can mask b12 issues tho

is it ok to take B12 without being tested

Yes it's okay because it's water soluble - meaning you can't overdose.

Advice is to see your gp

Problem is, if you take b12 without seeing gp - u could do yourself out of injections

When mine was 147
For2 days i took b12 tab
Gp toldme off firmly

Toldme risk is doing myself out of injections

Nhs can only give injections if x y z numbers

Mines re tested Aug 7
Then likely injections ...

Honestly - see your gp
4 b12 blood test

Decent b12 is so important

But its kinda not ok too
As - as my gp told me - by doing that - u can do yourself out of b12 injections

Best advice is to see gp
4 b12 blood test

Dya have / use nhs app ?

It should say exact b12 number on there

Are they offering u the NHS injection? @iloverobbrydon

Hi everyone, so update ..

I ended up asking my GP for my blood test results. My B12 was 129 but my ferritin was in range. It was on the lower end but not deficient.

I told my doctor that after the tablets I felt absolutely no improvement and i would like to try injections. He said let's re test me first and if the number is still in the deficiency range then we will talk about it. My number after the tablets came back at 300. I joined the pernicious anemia group on Facebook who said that you should not retest when you're on the tablets because all it shows you is the amount of B12 in your body and not the amount that's actually being absorbed and used. So it's pointless. I explained to my doctor that even though my B12 and iron are in range they are still on the low end and I am still having symptoms. I asked if I could just go onto the injections and see if they help. He said no.

So I decided to start self injecting. I was told on the FB group that you have to have your first done by a professional in case of a reaction. So far I have only had two injections within the space of a few weeks, I have felt no improvement but then again I know I need to have loading doses and multiple injections a week. I ordered all of my self injecting supplies at the weekend and I am just waiting for them to be delivered

@iloverobbrydon

" My number after the tablets came back at 300. I joined the pernicious anemia group on Facebook who said that you should not retest when you're on the tablets because all it shows you is the amount of B12 in your body and not the amount that's actually being absorbed and used. So it's pointless"

^
That from your post fits in with my Dr telling me not to take b12 tablets

Have u tried eating beetroot often ? Ace 4 b12

I hope the injections help

Dya have kellogs corn flakes daily? B12 rich

Hows your vit D ? Actimel daily ?

My results were as follows, ranges in brackets:
B12: 123ng/L (144 - 915)
Serum folate level: 5.4 ug/L (3.1 - 19.9)
Serum ferritin level: 28 ng/mL (11 - 306.8)

Although the ferritin is towards the bottom of this range, the GP never followed this up and nothing offered.

Fererin 28 is the issue

And obviously b12 isnt good either

But yeah - an iron iv would / could / should help feretin/ energy

You will know if you are deficient in folic acid as you feel like shit. I felt completely awful and felt better in a couple of weeks on prescription strength tablets.

Lots of people have symptoms if ferritin less than 50-75 even though it’s ok according to nhs scale.

I get a B12 injection in the doctors every ten weeks, but I pay for one in between at a local beauticians.