Possible B12 deficiency

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Hi guys,

I am just looking for some confirmation, could I have B12 deficiency? This winter I became very ill. I was not sleeping at all, felt anxious all the time, and the worst part was this - sort of - humming in my ear. 

My doc put me on anti-anxiety drugs and I did begin to feel better. I still feel really tired though and - at times - also a bit depressed. Sometimes my tongue seems to swell and it's like it doesn't fit my mouth. I also recognise the ataxia and afasia symptoms to a certain degree. 

Since I was so depressed, and this wasn't the first time, I recently also had testing done and discovered that I have a common mutation that is called MTRR and reduces my capacity to make active B12.

Would it be wise to test for B12 deficiency? I would love to test my active B12, but I am not sure I can convince my doc to do this. I do think this is the only way to find out if I have enough active B12. 

I had testing done before. My value in 2012 was 330 pmol/l.

I would love to hear your suggestions.

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  • Posted

    Worth getting the level checked again, 330 isn't particularly high. Many countries treat anything under 500 as a deficiency. Are you vegetarian or vegan? Have you had any surgery recently? Do you have digestive problems? All these can be reasons that you might be low in B12. Best wishes Marion

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    • Posted

      I have several gene mutations that make it difficult for me to process folate, B12 etc. I think that is the reason I was too low. I am not a vegetarian nor vegan and no surgery or digestive issues.
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    • Posted

      Sorry, I'd missed that bit about the mutations when I read your post. Definitely get another test done then. One of my worst symptoms was tinnitus, buzzing in the ears. It was also an early symptom, and got much worse before I was diagnosed. I also felt exhausted all the time, my balance was off, especially if I got up in the night to use the bathroom! I regularly bounced off the walls. My mouth and tongue were sore, my tongue was swollen, and I would bite it. My digestion became sluggish, like the rest of me. Hope you get your tests and some answers? Marion

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    • Posted

      No prob. Thanx for sharing the bit about the buzzing in your ears! Did it go away eventually? How are you doing now? I hope you feel better! I notice when I am going around the house, just doing my stuff, I bounce in to things very easily as well. And, yes. I feel very tired, all the time!

      Tnx for your reply!

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    • Posted

      Well I wouldn't say the buzzing has gone completely, but it isn't anywhere near as bad. Sometimes I hardly notice it at all. I don't bounce off the walls now, and I can stay awake! I've been on the injections about two years now, and I recently it my GP to increase the frequency to every six weeks. That has made a big difference to me energy wise. Good luck with feeling better soon. 

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    • Posted

      hi marion what was your b12 level before injections i also have started getting buzzing in my ears my level is 220 range 200-900 gp wont treat as within range
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    • Posted

      That's brilliant that you've managed to get an increased frequency for your injections marion29181.

      I'm not a mediacally qualified person but I've been on cyanocobalamin 1000mcg every four weeks for 44 years and only last month (after struggling for six years to get one doctor and then another) I got the go ahead to have them every three weeks.

      Both doctors tried every which way to convince me that my returning symptoms in the run up to the next jab "must be something else because you are having the injections" and "it's all in your head" or "It has to be every four weeks because that's what it says on the box".

      It's a national disgrace that so many doctors are fixated on the "one size fits all" idea where B12 maintenance is concerned.

      However there is life after P.A as I'm still "clivealive" aged 75 biggrin

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    • Posted

      I'm not a mediacally qualified person but if you are having neurological  symptoms of B12 deficiency and with your serum B12 level @ 220 your doctor should be looking at you - not at his computer screen.

      Do you have any ideas why you are so low?.  Are you vegan/vegetarian, had gastric surgery, been exposed to nitrous oxide, use the contraceptive pill, go in for extreme exercise, are under a lot of stress at work or in the home etc?

      Reasons for poor absorption of B12 are many and varied and these are the sort of questions you doctor should be asking you.

      Treatment of cobalamin deficiency

      "Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

      Standard initial therapy for patients without neurological involvement is 1000 µg intramuscularly (i.m.) three times a week for two weeks. 

      The BNF advises that patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement.

      However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment"This is how your doctor should be treating you as a matter of urgency. Make a list of your symptoms and present it to your GP and (if possible) take someone with you who has witnessed what you are suffering as a your G.P. is then less likely to laugh at you and try to fob you off when there is another person in the room.

      I wish you well.

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    • Posted

      My level was 176 when the GP began treatment, I was feeling very ill and had had a series of infections, sinus, throat, chest. Also multiple courses of antibiotics. I think the GP ordered the additional blood tests because he couldn't think what else to do. I'd been turning up at the surgery every week, or every other week over a three month period, and steadily getting worse. If you have symptoms at 220 then your GP ought to treat you. Can you suggest to them that they do it as a trial, to see if it helps? That was how I got my injections to be more frequent than three monthly. Best wishes Marion

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    • Posted

      hi marion many thanks for your reply, i have been attending a Endo for high cortisol he took many bloods including b12 , i should get the results next week, i am going  to ask him if he can write to my gp for trial b12 injections (not sure if he can), like you i have a constant sinus infection which i think may be causing the buzzing in my ears, and suffer from utis.
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    • Posted

      h my gp didnt offer any follow up he just said 220 is within range am so tired all the time and prone to infection i also have low vit d and high cortisol x
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    • Posted

      I think that when your B12 is low your whole immune system is compromised. Mine certainly was! All those infections that didn't respond to antibiotics. The other thing to get tested is your thyroid function, that can be out of whack too.  Post your results on here when you get them.

      ps I also had utis.

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