B12 deficiency symptoms but doc won't treat as test results normal

I had B12 blood test results come back showing a level of 319. My symptoms have been severe fatigue, headaches, migraines, depression, anxiety and I would like to try the b12 injections to see if they help but doc refused as said my levels fall within normal range and the other tests were ok showing blood cels normal size etc, though tests for antinuclear factor came back as potentially abnormal and he referred me to a rhumatologist. I explained about the info in the bma review paper about the b12 test results not always being reliable and that is recommended to treat if the symptoms suggest poss b12 deficiency but he wouldn't budge on it. All I want to do is try the injections to see if they help so feel v frustrated as am desperate to feel better and am also 32 weeks pregnant. Wondered if worth pursuing it with my usual gp as the one I saw yesterday was a locum, or am I just as likely to get fobbed off? Grateful for any advice or other info I can print off and take to show gp. Thanks in advance for any words of wisdom!

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19 Replies

  • Dear Mrs_t, If you have not been diagnosed as being a Pernicious Anaemic patient, you could benefit from oral B12 supplements. I recommend B12 sub-lingual lozenges or some patches(both obtainable from Amazon.) You must look after yourself to be fit for the new baby. I wish you all the very best

  • Thanks, is there any particular brand of the lozenges you'd recommend? I started taking the jarrow 1000 lozenges (3 a day) last weekend, I think may be getting some benefit from them but have also been ill with a cold so difficult to tell.

  • Yes, the Jarrow are good. Might be cheaper to take the 5000 lozenges ---£11.95 for 60 and 1 per day.

  • I don't know which BMA review you mean, but there is the UKNEQAS alerts and there is the new BMJ research article.

    I'd print both off, I'd go back, I would ask them to put the documents officially on your record and I would provide a letter stating that if you or your baby suffer as a result of an untreated b12 deficiency then you will be holding the doctor at the practice responsible. I would also point out you have been refused further investigation into your symptoms as recommended by the experts.

    The antinuclear test - indicative of an autoimmune condition - and pernicious anaemia (if that is what the doctors are still focused on) is also an auto immune condition. You have one there is a likelihood you will have more.

    The tests for pregnant women can also be skewed, so I'd ask your doctor exactly how this might affect your particular results.

    I'd do it ASAP and then you can take the supplements if you get a knock back.

  • Thanks poppet11, I did mean the bmj article not bma. Thanks for the info about the ukneqas alert too, I'll do as you suggest and go back with both printed out.

  • You have to remember that doctors rarely believe anything a patient says - although they will nod and patronise you. If the BMJ article goes into print then it's very likely your doctor or at least one at the practice will see it. Let them know that they will be held responsible. It's their job to do these things correctly - and if they won't upgrade their skills and knowledge, then they take responsibility when things go wrong. In short, let them put their money where their mouth is.

  • Unfortunately the probability is that your normal GP will refuse as well but the only way to know for certain is to try. On one level you don't have anything to lose from trying.

    Although 319 is in the normal range in the UK it isn't in the normal range in other countries (Japan has a cut off at 500). B12 isn't toxic and there are no known side effects from being over the top of the range. Infact hydroxocobalamin is used to treat cyanide poisoning at doses 5000 times that you receive in a loading or maintenance shot so overdosing isn't a factor.

    It would appear that you are not suffering from anaemia from what you say about the test results but anaemia is a potential symptom of B12 deficiency, not the defining symptom. These days people are increasingly showing psychological and neurological symptoms before any blood abnormalities manifest - one theory is that this is due to the amount of folic acid supplementation in food these days - which counteracts the effects that are picked up in blood-tests - so not really relevant to the diagnosis.

    If the normal GP does fob you off then self supplementation is a possibility.

    You may still have some ability to absorb B12 even if you have an absorption problem so flooding the system with huge quantities of B12 may result in enough getting through. It's generally more efficient to try using another way (ie not through your digestive tract) to get the B12 into your system eg sublingual tablets (through saliva), nasal spray (through nose), or skin patches, or the injections that you haven't been able to get. You may still need to take very high doses for this to be effective. Make sure that you are getting enough folate and B6 as you need these to help with metabolising the B12 - particularly the folate ... (B6 is a precaution as the body will convert folate to B6 if B6 is low).

    B12 Deficiency occurs either because you don't have enough B12 in your diet (eg vegan diet) or because you have a problem absorbing B12 from your diet - this can arise for a number of reasons including: PA - an autoimmune response that attacks the mechamisms that allow you to absorb B12; changes in acidity in the gut; gastric surgery (particularly effecting the ileum); genetic abnormalities in the ileum; and some medications, including particularly some treatments for heartburn, metaformin (used for Type2 diabetes). There is also a potential link to some antidepressants (SSRI's - commonly prescribed for anxiety and depression) which can deplete folate levels and as folate is needed in order to properly metabolise B12 this can make an absorption problem worse.

    As an aside - low B6 can also result in headaches.

    Caveat - don't take too much B6 - 100-200mg daily over a few months has been linked to neurological damage eg tingling hands and feet - generally it reverses when supplementation stops but there have been some cases where it hasn't reversed).

  • Ah hem. I've never thought the neuro symptoms came after the anaemia - but then I never realised (until recently) that most other people did. It pulls all the pieces of my particular jigsaw together quite nicely though.

    I think the misapprehension that the anaemia comes first is why there is so much confusion about the illness - because if they believe that then they believe the neuro damage has been prevented once the haematological symptoms have been reversed.

    Granted though, a lot of the anaemia is being masked (and I believe it always has been) and in most people I truly believe it is there in a clinical sense. Yet it doesn't alter the fact that the neuro precedes the anaemia and so a lot of people are being injured to a variety of degrees yet those people are being either misdiagnosed or accused of having some kind of mental disorder because they are insisting they have physical injuries.

    Like I say though, in my case the misconception answers an awful lot of questions - and some people are going to have a really hard time wiping that egg off their face when you consider how I have been maligned and treated.

    Edited just to clarify - the anaemia is an indicator that the DNA synthesis is already going wrong ie the neurological damage has already started. The anaemia can't come first because the anaemia doesn't cause the neuro damage - and the metabolic pathways clearly show that.

  • I may be talking out of the back of my head but I would just add a word of caution since you arev32weeks pregnant, it would be best to take professional advice because of this. But I am a very cautious person where taking unprescribed medication, so this may not be at all helpful sorry. Lightening

  • You would have thought her doctor who be being a little more cautious, Lightening. I agree entirely with what you are saying though.

  • Thanks everyone, really appreciate your replies. I am v cautious about what I'm taking because of the pregnancy, though from what I've read taking additional b12 is considered ok in pregnancy. I've found great benefit from a b complex supplement previously but since getting pregnant have only been supplementing with my prenatal vits, fish oil, probiotics and magnesium oil on my skin. I've been taking the jarrow 1000 lozenges 3 x a day for a week now and feel I may be getting benefit from them though have also been ill with a cold which I think may be turning into infection so is difficult to tell. I do think my health problems in recent months have been largely related to my immune system not working well but it feels a bit like trying to piece together a jigsaw blindfolded and I'm not sure how much the b12 is a factor but it seems worth a try to bring my levels up to see if makes a difference. I'm guessing I won't have much luck in pushing for the injections and am wondering in that case if there is any recommendation for optimum level of the sublingual tablets? I've been taking 3 x 1000 mcg a day but wondering whether to try a higher dosage.

  • Also Mrs t. What I didn't comment before is that beingb32 weeks pregnant some of your symptoms are probably because of your pregnancy, certainly fatigue and tiredness can be associated to both, I know I was, and I had not been diagnosed with PA at that time, and both doctor and hospital were taking blood tests regularly, and PA didn't show up until 5+ years after my last pregnancy at the of 32 anyway all the best with your pregnancy and your further consultation with your doctor. Lightening

  • Thanks, This is my second pregnancy and I am well aware that it is a contributing factor in how I'm feeling, but I do feel this is more than pregnancy tiredness and i am feeling increasingly frustrated by people telling me 'its just the pregnancy'. My last pregnancy I was well and active until the day I gave birth and this time around I have been getting more and more incapacitated for months to the point where I am housebound and struggling to function. Trying to stay optimistic though & focus on resting as much as possible and eating well otherwise.

  • Yes, sorry it must be annoying, but of course I wasn't in possession of the full facts that you had already had a previous pregnancy, but of course this time you presumably gave a young child to look after, and that on its own is tiring, I think you should still pursue your doctor to be thoroughly tested and then the appropriate treatment can be given. All the best and hope you feel better soon Lightening.

  • Sorry I am replying to my own comments, but I have reread your original comments, and I see you've had all the tests, so the only avenue left for you is your own doctor, and quote any of the info you have read up on as they really should be in a position to help you, especially with your expected baby in mind, so good luck. Lightening

  • Thanks, I've managed to get an appointment with rhumatologist week after next so will discuss with them and am guessing they may run additional tests too so hoping should get to the bottom of things

  • Hello my teacher Dr Ben Lynch teach methylation genetic defect prevents you from processing cyanocobalamin dosage form..try methyl cobakamin and tetramethylhydrofolate dosage form. Even if blood test seems normal that's what's in the blood not the active forms in side the cells. Check out seekinghealth.org or MTHFR.net look at the videos information and resources.

  • Thanks, the jarrow lozenges I'm taking are methylcobalamin. Any advice on optimum dosage gratefully recieved, I've been taking 3 x 1000mcg a day but not sure if higher dose would be better?

  • Three times a day is good cause it is probably short acting. Do you feel like you could use 2000mcg ? Another way to get more methyl groups is MSM or methylselenomethione. There are patches with B12 and selenium. I will follow up.

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