B12 Problem - Does this sound correct

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Back in Oct 15 I suddenly started feeling really tired, could barely stay awake in the afternoon, always cold, ulcers in mouth and pins/needles in hands and feet. I was told by my Doctor that I am B12 deficient but I have now been told by a Consultant Gastroenterologist it is Chronic Fatigue syndrome. I am 25 years old. I am sorry for the long winded details below but would really appreciate your views on whether this sounds correct. Thank you so much.

Feb 16: B12 level 71 so need urgent injections. Doctor said my B12 level had been around this since Oct 15 but I had not been advised. I had six injections with the last one on 6 Apr. I had a bad reaction to the injections (rash) and was prescribed steroid and anti-biotic tablets.

On 20 May my B12 level was 326. In mid-June my B12 level was 192 and I was started on supplement tablets. In mid-July by B12 level as 217.

End July 16: Appointment with haematologist. No problem with blood cells in any test. Test for intrinsic factor / antibodies all fine so no evidence of Pernicious Anaemia. Suggests referral for gastro investigation. There was around 12 month waiting list for gastro so decided to seek private second opinion.

Nov 16: Visited Consultant Gastroenterologist. He had a copy of all my medical and test results and went over everything. He advised that he does not believe that I am B12 deficient. He believes that the oral contraceptive pill is leading to inaccurate results on the blood tests. He said that the B12 latches to the hormone and travels around the blood so it is metabolised differently and leads to false levels being detected in the blood tests. He said that my blood cells looked very good with haemoglobin around 150 and all related tests absolutely fine (no anaemia ever). He is certain this is the issue but said the only way to put my mind to rest would be to stop the contraceptive pill or allow him to put a camera down my throat to check for atrophy (which he is happy to do if I wish to pursue this). He suggested that my symptoms were more likely due to Chronic Fatigue Syndrome.

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  • Posted

    I am sorry, but it sounds to me that your B12 does need treating. There is a misconception that you would have anaemia in the early stages of B12 deficiency. I've never heard anyone connect using the contraceptive pill to the way B12 metabolises. My suggestion would be to contact The Pernicious Anaemia Society for more advice. They also have a full symptom  list on their website.

    I felt utterly exhausted until my B12 was treated, but my haemaglobin results looked good. The tests for intrinsic factor are notoriously unreliable, and many people can have negative results, but still have Pernicious Anaemia.

    I hope you will find someone to treat your B12? Please ask for thyroid function to be checked too, as the symptoms are similar, and they often occur together.

    Best wishes


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  • Posted

    Poor you, this sounds rather confusing! Just out of curiosity do you or did you have any gastric problems? Because the ulcers are a indicator of a gastric/immune problem, hence being referred to a gastroentrologist. The haematologist is kind of right about the intrinsic factor/antibodies, because they are a indicator of P.A unfortunately in some cases intrinsic factor/antibodies don't always show up, so it doesn't rule out P.A or a B12 deficiency.

    Just as a guess it sounds to me that you maybe B12 deficient due to some kind of immune problem because your red blood cells and other associated cells seem to be okay, but cells related to your immunity/immune system have not been looked at also the gastroentrologist believes you have CFS this is another immune disorder, plus you had such a bad reaction to the injections, this again could be immune linked.

    Overall my guess is your (probable) B12 deficiency, becomes a huge problem when you're run down with bug's and viruses, adding to your symptoms, and in all likelihood giving the impression of having a CFS type illness.

    As for the pill thing, I have never heard of it (Im 36 B12 deficient and on the pill), but it is probably true if a consultant is saying it.

    Going forwards work with your G.P and run my idea past them, but If CFS is the umbrella diagnosis, the doctors come up with, each symptom needs to be treated so if blood tests show you need B12, that should be treated regardless.

    Good luck

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  • Posted

    Hi Marie

    In the USA the National Institute of Health agrees with your gastroenterologist.

    The NCBI agrees with your gastroenterologist.

    And many others agree as well.

    On the flip side, true deficiency in B12 can cause all types of havoc in the body.

    To be sure, you can either go off of your current contraception or have an endoscopy. The endoscopy sounds a whole lot worse than it is. You will be awake but medicated. Only takes 15 minutes...I have had several.

    Perhaps another form of contraception could be used.


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