Been back to the GP but was shot down in flames again. At my wits end

I had private bloods done which came back low in:

vit D: 21

vit B12: 202

serum folate:5.76

Went to see my GP with the results and was ridiculed for paying for private bloods and was told to have NHS bloods, which I did and the same results came back. GP has prescribed me some vit D tablets but said that vit B12 is normal as is serum folate. He said the NHS ranges were different from private companies and that's why I was told the results were low. Despite telling him of the symptoms I have he wouldn't budge on the vit B12

Been back today on the advice off here to try to fight my corner only to be told to stop asking Dr Google. Was left in tears, I am so exhausted I have no more fight left in me. Is there any way I can see a private GP and get B12 treatment or buy B12 treatment myself.

Please help I am desperate

10 Replies

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  • Hi spidernose. It's a bit late for most people to answer tonight but I'm sure you will get it tomorrow.

    There are private GP's around who, luckily, know about B12 deficiency, I had to go to one. There is also self injecting, forum members know all about buying supplies.

    So don't despair help will be along. This forum is bulging with helpful people.

    If you want some night reading put 'self injecting' in this search.

    PS your doctor sounds - - - I'm not allowed to use those sort of words here!!!

  • Hi, I think you need

    a) a new Dr OR b) you need to think back and start jotting down some symptoms and how they are affecting your health.(Have you used the list of symptoms listed on this site?) Take the papers back to your GP with your partner or someone who knows you really well and insist on some further testing eg Active B12; Homocysteine; Antibodies tests. Two people are harder to fob off - esp if it's someone who does not suffer from B12d brain fog!

    Of course, you might also need to discuss some help from the Administrators here; they are amazing and will have some clever ideas!

    Good luck.

  • Hi,like you I wasnt described b12 so I went and boughty own, just go to a good store or online I got mine and they definitely help me

  • Hi Spidernose

    If your GP and the NHS were doing their job you would not have had to get private blood tests done. I would not see that GP again and if you see others take someone with you. Your NHS results prove your B12 is low. I take Solgar liquid under the tongue when my levels came back at 300 (200-900). You will soon get lots of good advice. Your GP is ignorant Take good care. Hugs xx

  • I would suggest that you try writing to your GP and use materials from the pinned posts - most relevant would be the UKNEQAS alert on the dangers of using the results of the test as a single measure for ruling out B12 deficiency.

    pernicious-anaemia-society....

    The serum B12 test is an indirect measurement - what matters is what your cells are doing with B12 and if they are getting enough and there are a couple of steps after getting B12 into your blood. There is a lot of individual variation on how much B12 people need in their blood and the test ranges are based on averages. Just using the test range will result in picking up 5% of people who aren't deficient,but also in missing 25% of people who are. Using macrocytosis as a marker is also problematic as 25% of people present with other symptoms first, Symptoms are an important part of evaluating a possible B12 deficiency.

    The test you had done didn't have different ranges but it does attempt to highlight the problems with the serum B12 test by introducing a scale that isn't reflected in the results coming out of UK labs - including an 'insufficient range' which is where most of the 25% of people who are normal range but still deficient will be scoring.

    (Note: looking back at the original post on TUK there are some comments around the relationship between PA and serum B12 which highlight some lose use of terminology - PA in the sense that I and many of the others on this forum would use it) is one cause of a B12 deficiency rather than the other way round).

    also relevant are the BCSH guidelines on treatment for B12 and folate deficiencies

    onlinelibrary.wiley.com/doi...

    you can also access this on the PAS website along with other useful information if you are a member of the PAS. If not please consider joining.

    pernicious-anaemia-society....

    you could also suggest that your GP looks at this area of the PAS website which is directly aimed at providing medical professional materials with information relevant to the diagnosis and treatment of B12 deficiency and Pernicious Anaemia in general.

    pernicious-anaemia-society....

  • If you have facebook there's a support group with over 14000 members of many of which whom self inject including myself.They have a where to source file and everything you need to know on what to do. It's all recommend by there own admin who have done all the research for you.

  • What's the Facebook group called? I'll have a look

  • pernicious anaemia B12 deficiency group- really helpful. It always best to have your first injection under medical supervision just in case you have a reaction, which is rare but not unknown.

    Your doctor is truly awful I wish you luck, many of us have been there

  • Thanks. I'd prefer someone to inject me if that's possible as I'm not sure I can do it myself

  • Some people can absorb b12 pretty damn good from sublingual or other routes that arent injections so don't dispare.

    If the gp's are a no go and you're jumping into self treating you could try sublinguals (tablets or spray).

    You can get hydroxycobalamin sublinguals and that's the same stuff in uk Nhs injections.

    If it's a stomach acid issue causing malabsorption then the sublingual tablets don't need high acid levels to work.

    I'm still heading down the injection route in a bid to promote further healing but I managed to get my serum b12 up from 153pg to over 900pg on sublinguals alone.

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