Pernicious Anaemia Society
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B12

I would like to try injectable B12 as I am just above the lower limit and my GP won't prescribe it.

I have very bad tinitus in my left ear and I read that low B12 could be one of the reasons.

Hoping someone can help.

12 Replies
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Hi, sorry to hear that you feeling unwell. Can I just ask what level is your b12? And have u spoke to your gp about the new guidelines?

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I don't know what anyone else thinks of the new guidelines and I know they mention treating symptoms yadda, but the treatment for people with neuro injury is actually a lot worse because they are specifying a time limit - I believe 3 weeks. When before it was until symptoms stopped improving.

One step forward and two back. What is the point in getting a GP to recognise someone is b12 deficient and then providing inadequate treatment to reverse neuro damage?

I for one was appalled at the new guidelines.

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I think its an improvement on diagnosing B12 def/ PA, but am not happy with treatment section.

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Hi

I was borderine B12 def. at 226. I was lucky to have an understanding Dr. who started me on injections, however after only 3 injections I had a skin reaction so they were stopped. I then started to take Swansons ultra Methylcobalmin [ sublingual ] 5mgs. per day, and within a few months my B12 shot up to over 2000. they are well worth trying, I get mine from Amazon.

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Skin reaction is a common and usually temporary reaction at the start if treatment. It really isn't a valid reason to stop injections.

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It was a valid reason for me [ we are all different ] I didn't want to bore all on this site with my last post re other reasons for stopping the injections other than the skin/spots issue.

However I have chronic kidney disease, which makes my skin itch, so not good for the rash, my immune system isn't good after being on steroids for 15 years for Polymyalgia, and Giant Cell Atertitis. and as I was within the limits of 226 it wasn't a life or death situation if I didn't have the injections,

[ my Dr didn't have to give them to me, because I was within the limit but she thought she would give them a try .]

All was not lost when I started taking the sublinguals which brought my level up to over 2000 !!!! and much better for me than the injections.

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I don't know what other symptoms of b12 deficiency you have - but several points:

- it could well have been the type of injection you had (and the additives) that caused a reaction.

- Your levels after taking b12 mean nothing, it's whether it reduces your symptoms that counts.

- To understand whether it is reducing your symptoms you have to know what the real symptoms are, and many people don't.

- Because of the inadequacies of the test, your original borderline result means nothing. All that test does is roughly establish whether you have the end stage of the illness from anaemia - the life and death bit - but it is completely useless when it comes to measuring the preceding symptoms, the neurological problems, which can also result in death.

Some people do well, and by that I mean their symptoms improve, on oral supplementation and some people need injections. What you do have to remember is your b12 blood level is vitually worthless both before and after treatment.

Learn what the symptoms are, then establish whether the medication you have opted for is improving those symptoms.

Forget the numbers.

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Fair enough, but as Poppet11 says, a level of 2000 is meaningless if there us no improvement in your symptoms. Methyl sublinguals raised my serum level but did nothing whatsoever for my symptoms. It's not about numbers.

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Thank you for your comment. I am feeling fine on the sublinguals. I do understand what you mean re numbers, I have to have regular blood test for my other conditons, and sometimes I'm having a "flare" yet my inflammatory markers are normal, like my Dr. at Addenbrooks said "treat the symptoms not the number"

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I wish every doctor would adopt that attitude.

I'm glad you're feeling well on the sublinguals.

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My Nan has those injections every month and has done for years. This is where a Doctor needs to be referring to a high specialist.

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This is a great resource: b12d.org/

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