Is my B12 level low/deficient??

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Not been well for about 2 years. 41 years old. Previously a pretty active person walking lots and attending gym classes.

Symptoms are;

- Extreme fatigue

- weakness (carrying bags now a struggle)

- breathlessness

- constipation

- Sensitivity to light and blurred vision (only appeared recently)

- depression/intolerance to smells/noise

Blood tests 2 years ago

Given iron tablets

These gave me gastric problems which the GP wouldn't listen to

Resulting in going private and being diagnosed with GRD and an ulcer due to this not being addressed

Now on Omaprasol for life sad

2 years later I'm still feeling the same (except I now have GRD as well)

GP referred me to a therapist for depression. Within 20 mins of talking to me she asked if I'd been tested for B12 deficiency.

Bloods show a B12 level of 102. My GP doesn't seem to think this is a problem. My therapist thinks it is!!

Waiting for a further docs appt next week for a second opinion.

I would greatly appreciate any help or advice. I need my life back....

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  • Posted

    A level of 102 is very low, do you know what ranges were shown on the test results? Did you have ferritin, folate and VitD checked as well? Do you know if your thyroid function has been checked too? All of these need to be at good levels, and can often be low if your B12 is compromised.

    It will be good if the doctor you are seeing for a second opinion arranges additional testing. There is a test for intrinsic factor to aid diagnosis for the reasons of low B12. It isn't always accurate, false negative results can happen.

    I do hope your second opinion will confirm a need for treatment.

    Marion 

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    • Posted

      Thank you Marion. After the B12 I was re-tested for folate which was 4.1 and something else I didn't catch the name of (to rule out pernicious anaemia) which I was told was fine. The GP who called me advised that levels of B12 and folate were "slightly low" and that they would re-test in 3 months. I asked how this was going to change and she just said I could get some supplements if I wished. Regards, Melissa.

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    • Posted

      Oh and I didn't see the test results. The nurse just wrote down on a post-it note when I asked why I was having more blood taken that my B12 level was 102 and should be 150 and 750.

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    • Posted

      Your folate sounds pretty low too, and is needed to absorb the B12 that you do have. If you begin taking supplements before your blood is retested, it will skew any later results. There is always the possibility that taking oral supplements won't help you as you can have a problem absorbing B12 via your digestion. 

      Are you vegetarian or vegan, that can be another reason for low B12?

      Three months is a long time to wait if you are feeling really unwell though. 

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    • Posted

      Not I'm not a vegetarian/vegan. I just feel like I'm being fobbed off (like I was last year.) The doctor who called me said that because I didn't have pernicious anaemia then my body could absorb B12, which from research I understand is not always the case. There again she also said that s B12 deficiency would not cause eyesight problems and to see an optician!!!? If they don't give me a good explanation as to why they don't think I should be treated further then I'll ask to be referred to see a private specialist as it's taken over a month to get to this stage 😞

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    • Posted

      I'm sorry to hear you are having so many problems getting treatment. Have you had a look at the Pernicious Anaemia Society website for a full symptom list? If you are a member, they can sometimes intervene on your behalf. They will help with other causes of low B12, not just Pernicious Anaemia. 

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    • Posted

      I've only just started to research it at the suggestion of my therapist. But thank you for this I shall take a look 😊

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  • Posted

    The very fact that you are on "Omaprasol for life" should alert your doctor to one of the causes for your Vitamin B12 deficiency and that together with your low Folate suggests the reason why you are having those symptoms you listed.

    I'm probably not allowed to post web links on here but if you search N.I.C.E. Guidelines on B12 and Folate Deficiency the first responce will read something like "Anaemia - B12 and Folate Deficiency - NICE CKS".  Click on this, then on "Management Scenario" and scroll down to "Treatment for B12 Deficiency"

    Here you will read how your doctor should be treating you. You may wish to mention this at your next appointment and present a list of your symptoms.

    I am not a medically trained person but I've had P.A (a form of B12 deficiency) for over 45 years.

    I wish you well

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    • Posted

      Thank you for your advice, it's very much appreciated. I'll certainly take a look at the websites you've suggested. I don't seem to have much luck with GPs - I've moved practices since being diagnosed with GRD and I'm getting the feeling I'm being fobbed off again. Doing my research and preparing myself for my appointment this coming Friday!!

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    • Posted

      Just been to my doctors for a second opinion and they maintain that a b12 level of 102 is only marginally low and nothing to be concerned about. I have bought supplements and am to be re-tested in 3 months. My GP is of the opinion that my symptoms are depression-related.
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    • Posted

      That's absolutely rubbish.  Your doctor should be traeting any neurological symptoms you have not looking at their computer screen.

      Join the Pernicious Anaemia Society, it costs but £20 for a year's membership and they may intersede on your behalf

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    • Posted

      Just an update. So I've been taking the highest dose of vitamin b12 for 24 days and the improvement at present appears to be substantial. My eyes are significantly better with no apparent sensitivity to light and I'm not sleeping/tired all the time 😁🙏🏼 Hoping it continues before I have my b12 levels tested again in 2 months time. Does anyone know if the fact that I seem to be responding well to the supplements in the early days mean that my body appears to be able to absorb b12 or is this far too straightforward lol??

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    • Posted

      It is true that some symptoms of B12 deficiency can improve very quisckly whilst others which are neurological may take substantially longer depending on the severity of any damage done to nerve endings which the B12 is endeavouring to repair.

      It is good that you are experiencing improvement on tablets alone which may suggest that you don;t have an absorption problem with your stomach.  Hopefully you are also supplementing with folic acid as that band B12 helps your iron to make red blood cells amongst other functions.

      You can buy folic acid cheaply at any chemist across the counter. I have personally taken 1 – Folic Acid 400µg tablet every day for more years than I can remember but then I've been on B12 injections since 1972 for pernicious anaemia.

      I hope you continue to improve but if your neuro symptoms don't you may have to consider going back to your GP with a list, explain how and with what you have been supplementing and ask him/her to give you a trial of B12 injections in accordance with the N.I.C.E. guidelines.

      I wish you well.

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    • Posted

      Well, it's very good to hear that your symptoms are improving. It's a good idea to take some folic acid tablets as Clive suggests, plus a good quality B complex vitamin pill. The B complex will keep all the B vitamins in balance.

      Perhaps you can absorb B12, but there may have been a temporary reason for you having problems in the past. Usually this will be due to a digestive problem of some kind.

      Good luck for your testing in two months time.

      Marion 

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    • Posted

      And so it goes on... after feeling incredible for about a month on the b12 supplements with all symptoms gone...almost as quick as the symptoms went they came back sad Plus I now have a funny feeling in my hands like the blood's being stopped to them! 

      GP is puzzled. Went yesterday for more blood tests (she mentioned thyroid which I was told hadn't been tested in 2 yrs) and if these results don't show anything she agreed to refer me for further investigations via my Bupa insurance policy. Watch this space........

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    • Posted

      It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with. I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

      A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

      If you can get to see your doctor please also ask her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

      I wish you well 

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