Going round in circles, I think I might have B12 definciancy but the doctors wont help me

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Such a long story, I will try and make it short. Nine years ago started with IBS alternating bouts of constipation then diareah and so on, bloating so bad I couldnt eat a full meal, weight loss, hair started thinning gradually over the course of 9 years. Had various tests, gynae scans, ultrasounds, even had a laproscopy to rule out endometriosis, loads of bloods, bile salt malabsorbtion tests, went to see a dietician who advised FODMAP diet, it helped a little but I still felt terrible. Started to have a pain in lower right side of bowel, had sigmoidoscopy but all tests were normal. They were happy I didnt have IBD, no gynae issues, as far they were concerned I had IBS and to live with it. Over the last few years symptoms are worse, at one point I couldnt gain any weight, hair was falling out and become so thin and brittle, I started using vitamins and whey protein and weight training, I felt awful, I was having diarreah after eating, and my stools were yellow or bright orange messy, foul smelling, I was sure that despite the healthy eating, and training, that my body wasnt getting the nutrients from my foods.

The last 2 years the symptoms have persisted but become neurological in nature, it began one day when my right hip started to ache, and the pain worsened on and off, and one day I couldnt walk or put weight on my leg because it was sending a nerve pain all down my glute and hamstring on the right side, the same side where my lower bowel hurts. I was sent for an MRI and they said there was no cause, they said it just must be sciatica and to try physio, I did and it did nothing. I can barely do a 2 mile walk without some kind of pain in my legs, they are so stuff and sore and have shooting pains, and my right hip pops as if the socket is moving, sometimes if I hear a loud noise it seems to send shock waves of pain to my right hip and leg, its bizarre.

These issues worsened when at work a few months ago I started to feel dizzy in the canteen on and off, and noticed my heart rate was slowly increasing and I was having palpations, a few weeks after I had a bizarre migraine type issue where I lost vision in the right eye, I couldnt see part of my field of vision, it was missing, and I was confused, couldnt speak properly, had pins and needles in my right arm and a numbness, after 10 mins it passed, and I was left with a slight jaw ache, throughout the day I felt better, had ECG tests and brain scan, all was normal.

Other strange symptoms I have on and off and have done for a while are ringing in my ears, and a pain in the right side of my head that comes and goes for a few seconds on and off in one area. Also gum problems which Ive had for years, mouth ulcers, gingivitis, sore gums, I am so prone to them, lately I had angular chelitis and looked it up and it lead me to the B12 deficiancy possibility and I thought it could be me?

The doc said theyve checked my B12 and mine is 400 and thats perfectly normal and I have IBS and to live with it basically, I cried down the phone, I dont know what to do anymore

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  • Posted

    That is a frustrating journey, you should be careful not to let it get to your head. I would be careful not to lump everything together and disregard your doctors in favour of internet advice from unqualified people without access to your results.

    Sciatica is not necessarily related.

    I wonder about a sigmoidoscopy versus colonoscopy. Sure many problems are covered by the former but not all.

    A level of 400 makes a shortage of b12 extremely unlikely. In any event other blood tests should show eg low RBC.

    The first step I would try would be gluten free. If it applies you should see some improvement quickly.

    A strong B complex might help.

    You could also try an elimination diet. Start with a few days of one simple food then try adding things one at a time to see what effects you. A pain sure but....

    I don't know your age and health prior to nine years ago but I would have thought there would be some sensitivity to food if it was allergic before that.

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  • Posted

    thank you

    i did try the FODMAP diet but coukdnt find any triggers.

    i rechecked my B12 and folate result, my B12 was 414, folate was 6.5, i noticed however that it mentions on the results that doses of biotin of 300mg or more may skew them, i take 5000ug a day, and jve realised there is B12 in my creatine and protein powder too so i dont think they are accurate.

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  • Posted

    Testing for B12 deficiency through your GP won't really give you any clear answers, they only test serum B12, Lab reference ranges 211 & 900 although they vary throughout the country, this is a general average. If you test come back between these levels, they are often dismissed. Marked up as ''within the range''. Unless they fall below 200, they don't really tend to be tagged up & the GP makes a note of NFA No Further Action. If you request a copy of you results, you can then further ask advice on Facebook Groups. Vitamin B12 Wake Up is a very good group, you could ask to join. The most up to date & comprehensive website as a starter is www.b12deficiency.info

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