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B12 Insufficiency question

(12 Posts)
SerialGoogler Wed 13-Jun-18 18:18:30

Hello,
posting here as possible link to pernicious anaemia. I've done a couple of blood tests in March and June, primarily for thyroid function which I am monitoring due to family history and because GPs only do basic TSH and that isn't the whole picture. Anyway, as part of those profiles my B12 has come back twice as insufficient: 193 & 198 with insufficient range 145 - 250. I am certain is isn't my diet as I eat meat, eggs, fortified foods etc regularly.
For further background, the doctors notes from the private test suggests keeping an eye on thyroid function as if trend continues results suggest I will eventually need treatment. This could be a year/s down the line though.
Are the B12 results worth a GP visit or self treatment?

andalittlebitofpixiedust Mon 18-Jun-18 22:50:03

www.b12deficiency.info will tell you more. Also a great FB group Called Pernicious Anaemia / B12 Deficiency Support.

MellowMelly Mon 18-Jun-18 23:05:55

My daughter takes Riboflavin and it has significantly helped her. We just buy them from Holland and Barretts. Her energy levels went through the roof within about a week!

Labradoodliedoodoo Mon 18-Jun-18 23:16:47

Low b12 can be dietary or gluten related or thyroid or other.

Cliona1972 Tue 19-Jun-18 21:40:07

If you eat a balanced diet and are still deficient, it may be that you cannot absorb it through your food.Injection may be needed, sorry sad

HerRoyalNotness Tue 19-Jun-18 21:49:43

I spent 6 maths taking supplements without zero change to B12 levels. I have RA (newly diagnosed) which can affect absorption. I’m now on weekly injections. Can’t say I notice a difference, I have to have bloods soon to check. It’s worth trying though.

SerialGoogler Tue 10-Jul-18 18:23:03

Sorry for coming back so late. I sent copies of my private tests to the surgery stating I would like to investigate the B12.
To my surprise a GP called saying my thyroid needs looking at. He seemed not remotely interested in the B12 despite my saying that it couldn't be diet related. Anyway, I pushed my concerns and he wants to repeat all the private tests and would ask if he could add Intrinsic Factor etc to them. No idea why they don't trust an established lab's results but there you go.
I am actually relieved he is looking at my thyroid because as Lab says, it could all stem from there.
My TSH rose in 3 months (latest 2.25) and although 'normal', my Total and Free T4 are low.
Free like an old woman in my 40s but it's such a long road to getting someone to listen to you and try to get to the bottom of it. I am only being listened to because I went private for the tests!

IllHaveALargeGlassOfRed Sat 14-Jul-18 11:38:12

My DH has Crohns and because of where it's located (terminal ileum) he can't absorb B12 so has to get 12 weekly injections.

He was and still is getting monthly blood tests but it was only when I pointed out that his B12 levels were low that they put him in on injections. I was so annoyed because they'd signed off his results as satisfactory. I think you need to highlight concerns and not just accept their expert opinions. What's the worse that can happen?

SerialGoogler Sat 14-Jul-18 12:29:33

GlassofRed It never fails to amaze me how much of our own leg work is needed to get anywhere! I had to do the same to get my son's health issues taken seriously. From what I've read b12 deficiency is hugely undiagnosed and yet the symptoms are severe and debilitating and probably at the root of other health conditions where the symptoms are treated and not the cause.
It's okay where people have the energy and assertiveness to advocate for themselves or loved ones but how many people accept feeling like crap because a doctor says there's nothing wrong according to the limited tests they've ordered?

Battleax Sat 14-Jul-18 12:35:36

It never fails to amaze me how much of our own leg work is needed to get anywhere!

Tell me about it grin

At a minimum, you should ask for coeliac antibody and intrinsic factor
blood tests. To exclude coeliac and actual pernicious anaemia.

If you have a known gastric issue, have had part of your stomach removed it’s less of a mystery.

Look up the NICE guidelines for B12 deficiency and insist that they’re adhered to. If you have any neuro symptoms (numbness, parasthesias, cognitive fog), there are slightly different guidelines.

SerialGoogler Sat 14-Jul-18 15:35:06

I got the coeliac test so awaiting that along with FBC, B12, TSH and FT4 but no luck with intrinsic factor, though I did push. Will do that privately once this set of tests is back.
I've learned the hard way that if you need something doing, do it yourself...

irunlikeahipoo Sat 25-Aug-18 22:33:18

I bought my own B12 Ampules from Germany as the 3 monthly injections were not enough I then self inject myself

7.50 euros for 10 ampules or you can get 100 for 50 euros plus P&P
I also take Galfur Syrup as I was also very very low in Iron

The results in my energy has been amazing no more afternoon naps after 2 years of feeling shattered and exhausted I feel like a new person

Mine started after Biatric Surgery it’s very common

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