GP not treating vitamin B12 deficiency

[BlackInk]

Hello

I've posted along these lines before, but time is moving on and I'm still not getting anywhere.

Trying to keep it short, about 3 years ago I went from being healthy and never seeing a doctor to feeling horrendous all the time and having a long list of odd things wrong - stomach issues, weight loss, twitching, tingling, various aches and pains, dizziness, clumsiness...

After about a year they tested my B12. It was 166, below the bottom of their normal range but they didn't tell me. 6 months later it was tested again at 160 and they said I could take some OTC vitamins if I wanted to. I read up a bit on B12 deficiency and took a high-strength B12 supplement. I also started taking liquid iron as that was low too. 6 months later B12 had fallen again to 122 and GP prescribed 5 B12 injections over 2 weeks then I had to wait 6 months for another B12 test. This came back at 208, so just inside the bottom of their normal range.

GP now says I'm 'cured' and my symptoms (which are gradually getting worse) are psychological and nothing to do with low B12.

My diet includes PLENTY of B12, and is generally pretty decent.

I feel so ill almost all the time. It's affecting my children, my relationship with my partner, my work and my whole life.

I'm going back to my GP on Friday, but I don't know what to say to them. Last went in June and dr was so rude and dismissive that I came out feeling humiliated and beaten.

I've mentioned before that they aren't following NICE, NHS or even local guidelines on the treatment of B12 deficiency, but they just shut me down.

Obviously I have no idea whether my symptoms are due to low B12 or not, but surely it should be treated anyway?

Any advice or expert opinions welcomed. I'm starting to regret making the appointment...

BI

Sadly you just need to see another GP as yours, like many, doesn't have a clue about the management of B12 deficiency.

The alternative is to buy B12 online and inject yourself. Many do. I have done so for 2 years now and I'm so glad to be in control of it. It took 2 months of injecting almost every other day for my symptoms to disappear but still have to inject about once a week after that. I now inject once every 2 months or so. I actually don't know because I forget about it until the very specific symptoms are back, which for me are a fatigue that is different to the tiredness I feel every day for other reasons, starting to feel out of breath just walking or talking and my eyes and fingers starting to twitch.

First, liquid iron formulations from health food shops/supermarkets are not going to make a blind bit of difference. If you are actually iron-deficient you need a prescription for much higher doses of iron. Secondly, if you are significantly deficient in vitamin B12 it is very unlikely to be due to a lack of the vitamin in your diet, given that your liver stores enough for several years and you'd have to be eating an ultra-clean strict vegetarian/vegan diet with no fortified breakfast cereals for a long time to deplete the stores. If it is secondary to pernicious anaemia (autoimmune gastritis) or some kind of bowel inflammation affecting your terminal ileum (e.g. Crohn's) you won't be able to absorb B12 anyway and would need to have regular injections. Has your GP even suggested your being tested for autoantibodies?

@swingofthings I've seen a few different GPs at the same practice and they all seem to be of the same opinion... which just makes me feel like I must be going mad!
I really don't want to take things into my own hands, or they will never take me seriously again...

@SirTonyBelch My iron (ferritin) dips below the bottom of normal range every now and the, and has done since I was a teenager. My FBC comes back as normal, although some things are always only just in range (platelets and haematocrits are always at the very bottom of normal range). I really struggle with prescribed iron supplements as they give me terrible stomach cramps and nausea.
I am vegetarian (have been for a long long time) but have checked carefully and eat close to double the RDA for B12 (and always have done) so I'm sure it's not diet related.
I tested negative for PA but had a positive ANA result. I think the lab ran standard further checks off the back of this and they came back normal. I don't know exactly what was checked. GP says the positive ANA doesn't mean anything even though I have a strong close family history of autoimmune diseases - lots of T1 diabetes in close relatives and also Addison's disease...

Sorry to go on and no. I can just feel another pointless GP appointment coming along!

BI

Blackink.
Aha. I had same response from GP on positive ANA test.
I also have strong family history of RA (all the women on my mums side going back 4 generations).
It was dismissed as being "one of those things".

You must be as frustrated as I am. It's annoying.

And I hear you on coming out of a GP appointment feeling beaten and humiliated.

Solidarity

@Sunmoonearth
I did read up on the significance of a positive ANA and everything I read suggested that a positive ANA could signify early stage autoimmune disease and wasn't important in and of itself UNLESS the patient has symptoms, which we do! Also that a certain small percentage of people are ANA positive without symptoms... however I don't know how they know this as surely it's only tested for when people present with symptoms that could be an autoimmune disease?!

Feel like they're just sending me away to get iller...

I'm sure I've also read that blood tests for RA are unreliable?

Blackink. Ah. I'm going to google that and print it and bring it to GP and say there you go. Positive ANA and symptoms.
I also have thyroid antibodies which could account for some sort of autoimmune condition.

I'll attempt to corner them all and get some sense out of them.

Frustrating and annoying.

Were we men, it would already have been sorted. (Whole other rant)

Sounds like you might be lacking intrinsic factor to use the B12? Look at pernicious anaemia.

@moreismore
I was tested for IF and anti parietal cells and both came back normal, so it looks as though PA is unlikely. I know there are other causes of being unable to absorb B12 properly, but GP disagrees...

Have you asked of they'll give you a course of injections to see if it makes a difference? I cannot absorb B12 in any other way. The injections once a month make a huge difference.

I feel your pain. I have low B12 and ferritin is 11. Apparently neither of these are significant and my blurred vision, hair loss, numbness, fatigue and stomach issues are all down to anxiety.