What should I take to the GP to back up my theory that I have B12 deficiency?

[KatyMac]

I've done a fair bit of internet research - which I know GPs hate

I'm fairly sure I'm right - but I do accept I may not be

[[http://cks.nice.org.uk/anaemia-b12-and-folate-deficiency#!topicsummary this is the NICE stuff] should I print it out?

I aslo have this but it might be a bit woo

I don't want to be a pain in the arse - but I am getting fed up of being 'poorly'

B12/folate deficiency can be a common symptom of coeliac disease - you should consider asking for a coeliac test too (can all be done in one blood test - well, one blood extraction from you that gets sent off for various tests IYSWIM).

I've been tested twice for coeliac & had a biopsy too - all negative
My B12 is 151, at Easter it was 150 & in October 151

I also have the macrocytosis thingie

Poor you, Katy, I am no expert about B12 levels but I really hope someone who is comes along soon.

Thanks

I wish I was more assertive

The first thing you need to know is the reference range for your B12 test.

Where I live this starts at 191, so you would be below range.

If you are below the range where you live, then your GP should treat you, and if he does not, you have cause for complaint.

If you are within range and he thinks that’s all right, then you might need to wave the NICE guidelines at him, especially the bit where it treats 150 as the cut off point for deficiency. On your current results, you are right on the edge.

With a level around 150, I think it is highly likely that your low B12 level is causing you symptoms.

If you aren’t ready to fight your GP for investigations and treatment, you could just buy some sublingual lozenges off Amazon. These are very effective at raising levels quickly if taken on a daily basis.

As your B12 is so low, it is likely that other vitamins and minerals are low as well, which makes a huge difference to how you feel.

It's 130 - so I'm within the range

I have CFS,FM & IBS

I have tingling/pins & needles in my hands and feet & have had for upwards of 4 years

Hi Katy,

I have B12 deficiency caused by pernicious anaemia. Took me months to get diagnosed, but I know people who waited years for a diagnosis as GPs don't seem to acknowledge how bad it can make you feel.

I had 2 blood tests and was told both times, all results normal. When I went back a third time i asked for the actual results. I was told b12 level was 140, (minimum should be 200).

When I questioned the GP about this he said low b12 wouldn't give you symptoms like loss of balance, lethargy, fatigue, dizziness, palpitations, leg pains etc. Argued with him that it can as I have a strong family history of auto immune conditions and have seen others experience the same things.

Told GP I wanted further bloods done to check why b12 was low, as "low b12" isn't a diagnosis on its own.

He eventually agreed to do the tests and they showed I had pernicious anaemia. Was started on b12 injections the day results came back and haven't looked back since.

My advice would be:

Go to GP, explain your concerns and ask for blood test that will check b12 level.

When results come back ask for the actual number and don't just accept "everything looks normal".

If b12 is low you will need further blood tests to find out why , PA, coeliacs etc

Is there anyone you can take with you for support?

Feel free to send me a PM if you need any other info

Good Luck

Oops, cross post KatyMac. Just read your post saying b12 is 130. That is very, very low.

You need further tests to find out why b12 is so low. Someone recommended the lozenges and that would be fine if your low b12 was just down to your diet lacking in foods that give you b12.

However, if you have pernicious anaemia you can't absorb b12, so you would need to have injections.

Sorry my B12 is 151 - the range for Norfolk is 130 so I don't get treated

I think my deficiency is diet related due to the IBS I am on a massive exclusion diet

But the GP (& the Gastro consultant) have both said my level is 'fine' - I need to convince them it isn't

Are you excluding gluten KatyMac?

No - I was told not to

No help to offer I'm afraid but thanks for starting this thread Katy

I hope you find some answers.

Your thread has made me realise I have some questions to ask at a forthcoming appointment.

(Ds1 experienced some weakness in his legs on standing a year or so ago - I saw him nearly fall down the stairs because his legs gave way. I googled it - as you do! - and found that it could be due to B12 deficiency. I was further interested to find that some of the main sources of B12 are milk and eggs - DS1 is badly allergic to both and so never eats them. Ah - ha! I upped the other foods its occurs in and the problem went away . . . he has since been referred to paediatrician due to blood in poo and high levels of the stuff (forget name) that indicates you have an inflammatory bowel condition. I had assumed this is all linked to his allergies but I will make a note to ask what his B12 levels are.)

I know that your coeliac tests (and the biopsy) have been negative, KatyMac, but your symptoms sound SO like coeliac, it is disturbing. I know that some coeliacs get the 'pins and needles' feeling too. In your position I would suspect 'non-coeliac gluten-sensitivity' which is increasingly becoming recognised as a thing - Coeliac UK has been sponsoring research on it.

You might want to look it up, and consider doing a gluten-exclusion diet (to the high standards of a coeliac) for 3 months and see what difference it makes. It is a tough diet to come to terms with (I have two coeliac DC) but once you are on top of it, it is very manageable.

I would become almost carnivore; no milk, no eggs, not nuts or pulses, no green veg, no raw fruit, no onion, garlic, peppers, tomatoes, mushrooms, coconut

As it is I eat bread, potatoes, root veg & meat

Good luck Balloonslayer

I believe I have non coeliac gluten sensitivity, op.
My mum is coeliac and wasn't dx til her 60s but I was tested and told I'm not.
I am currently on a low carb/gluten free diet to try and get rid of my GERD.
I am actually following dr John briffas dietary advice.
Good luck x

I hate my diet
I hate my IBS
I hate my FM
I hate my CFS

I really, really want to fix it - I've tried all sorts; but I really think B12 is a possibility. If I can only persuade my GP

Op...I have fibro and ME too.
Amazing how these issues are so often found together isn't it?

Amazing how often CFS/FMS/IBS are misdiagnosed.

I was told three times that I had CFS, when actually I had low B12 and folate, serious vitamin D and ferritin deficiencies and an underactive thyroid, but a 'normal' TSH.

Now I am on thyroxine I am completely well, which is not bad going considering I started the thyroxine in 2013 and had had the IBS since 1979 and psoriasis, which has also gone, since 1991!

I know I am not alone.

RockinD - can I ask how you found out you had an underactive thyroid if you have normal TSH?

does this say what I need it to?

My TSH was in the normal range, although rising slowly but steadily, but my FT4 and FT3 were always low in range and falling.

Do you have some thyroid test results to share?

Any other suggestions of documents I should take to the GPs

Maybe I should go see a private GP & just try it anyway