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B12 deficiency

Soph46 profile image
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Hi I've been advised to turn to this forum as I've reached desperation for answers and help! My mum paid for me to have a private blood test as I've been getting nowhere with the NHS. I was tested for thyroid due to a very strong family history as I feel awful constantly and struggling to lead a life at the age of 22 just constantly having to sleep, struggling to work. But the Thyroid came back ok but the vitamin b12 and folate came back low my b12 came back 144 and folate 4.33 as advised by the doctor from blue horizon (company that done the private bloods) I spoke to my gp today, but the first thing that she said was the b12 blood test is inaccurate and didn't really want to listen to what the private doctor had to say and said that my bloods need repeating. I'm just worried that the gp will say my bloods are fine and that I don't have a b12 deficiency yet the private company have said I do? I'm really struggling Day to day I have no energy at all I have headaches all the time my memory is awful I'm 22 and can barely remember anything! All of my nails are bending over, and I was also diagnosed with depression over a year ago and I'm on anti depressants. I've told my gp many times I'm so exhausted and I'm struggling with the battle against my body but they wouldn't test me for anything and said it was to do with stress but I know it's more and I know it's not normal for a 22 year old to have to "nap" 3 times in a day and then have a full 11/12 hours solid sleep. And it came to a point where my mum couldn't watch me struggle anymore so felt she had to pay for me to have private bloods and they've come back with the deficiency but my gp seems to not believe the private bloods? I just want treatement and have a "normal life" of a 22 year old :-( and it seems that the gps just think it's all in my head :-( would really appreciate some advise on what to do now. Thank you in advance

Sophie

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Gambit62 profile image
Gambit62Administrator

at 144 it is extremely unlikely that you aren't B12 deficient.

I am not sure what your GP means by the B12 test being inaccurate - the tests for pernicious anaemia - which aren't the test you had are inaccurate but ...

much more likely that she is one of the many that does not like patients going off and having private blood tests done. I presume that you have had the test rebooked and now need to wait for the results.

I know its difficult but you really need to wait for the results and talk things through with your GP - if the retest doesn't come back below range then there are materials in the pinned posts that you can use to try and educate your GP about exactly how she should be going about evaluating a potential B12 deficiency but there is no point in worrying about things until you get the GPs reaction - just go armed with a list of symptoms and relevant extracts from the BCSH and NICE guidelines

pernicious-anaemia-society....

onlinelibrary.wiley.com/doi...

cks.nice.org.uk/anaemia-b12...

Soph46 profile image
Soph46 in reply toGambit62

That's what the blue horizon doctor said that is very low and recommended I get treatment from my gp. Yes I do believe that I've put her nose out of joint going and getting private bloods. Yea I had bloods done today and awaiting the results. Thank you very much for your advice I will have a look at those guidelines aswell

Steap profile image
Steap in reply toSoph46

Just make sure you don't use b12 suppliments until you've proved your case one way or another and gotten a diagnosis.

Even a few b12 sublinguals will effect the results and worsen your argument for treatment.

I'm wearing that t-shirt.

Soph46 profile image
Soph46 in reply toSteap

Ok thank you for advice, I've not taken any supplements at all had the private results back last Friday and NHS bloods done today so will see what it comes up with

Steap profile image
Steap in reply toSoph46

You may want to consider the mma and homocysteine tests to strengthen your argument.

There are far more knowledgeable people on here than me who will advise on them.

Soph46 profile image
Soph46 in reply toSteap

Ok brilliant thank you !!

Soph46 profile image
Soph46 in reply toSteap

Will any private companies do them tests?

Steap profile image
Steap in reply toSoph46

Yes

I use Medichecks.com but there are others

Soph46 profile image
Soph46 in reply toSteap

Ok brilliant thank you

Steap profile image
Steap in reply toSoph46

medichecks.com/tests/methyl...

miglet54 profile image
miglet54

I had the exact same thing. GP looked over the BH tests, they weren't the ranges she was used to so repeated them. Wasted money on their part, all came back low, just with different ratios.

Cynicalunicorn profile image
Cynicalunicorn

Without being nosey...my GP told me B12 tests are unreliable if you are pregnant, but I haven't heard of the B12 test being unreliable at other times.

Soph46 profile image
Soph46 in reply toCynicalunicorn

I'm definitely not pregnant lol and everyone is saying that I don't know why they are saying it's unreliable either:-/ I don't know if it's to cover themselves for not bothering to test for it when I was begging for anything to find out why I feel so ill :-(

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