Pernicious Anaemia Society

B12 & Hearing Loss

Hi! Does anyone else suffer from hearing loss- low pitch sounds?

I ask my GP for a referral over 2 years ago for a hearing test. I was told there was nothing wrong with my hearing. I asked for another referral in January 2015. It's taken 6 months to get an appointment.

I was at hearing clinic yesterday.

I was taken in to have a hearing test before seeing the doctor. I asked if it was the same test as last time, high pitched sounds. Yes. Told her there is no point as I am fine with high pitched sounds. It's the low pitched sounds, like voices, I can't hear. But I said go ahead. She did 3 tests. After waiting an hour, I was taken in to see a different doctor as the other one was running late.

The doctor I saw said I had low pitched hearing loss in both ears. He is referring me for hearing aids. He said if it was only one ear then he would be concerned there has been some damage or trauma. This wasn't the case. But he couldn't be sure what The cause was.

I asked if he wanted to hear my view. Yes.

I said that this was due to life long undiagnosed celiac, which has caused B12 deficiency, which has caused nerve damage. He smiles and said I was very knowledgable, and was likely correct. I said I was self medicating with sublingual methylcobalamin. He told me to continue taking this. And to see a gastroenterologist to have the celiac diagnosed. I said I won't go back on gluten.

But I have been referred to a gastroenterologist at my request for radiation enteritis, which is further contributing to the B12 deficiency.

It was such a breath of fresh air to talk to a doctor who had knowledge of B12 deficiency and believed me.

And I might be wired for sound very soon. Lol 😃

7 Replies

It paid to be assertive, didn't it? Well done!

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Glad you saw someone who was prepared to listen - good to know there are some out there.

I had a bit of the opposite experience today - went to the hospital with my mother about something that wasn't obviously related to diabetes. Consultant asked about her diabetes and put down Type 2 - I told her it wasn't type 2 it was MODY - I queried this and was told that MODY is Type 2 - which I know is wrong and feel really irritated by. Fortunately it isn't relevant in this instance but if they can't even get diabetes right - there are some quite different responses to medication between MODY and Type 2 and I think I'm about to have a battle with my mothers GP because she is on metformin and I'm not entirely sure why unless everyone is assuming it is type 2 ... just want to scream.

Nevertheless I'm really glad that you found someone that was prepared to listen rather than pontificate from a plateau of ignorance ...

Really hope that the hearing aids do the trick as well - pity that it has been delayed as that can affect how quickly you adjust.

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I have celiac too, which was diagnosed right before my 31st birthday. I've had tinnitus since 29 or so.

Good for you for speaking up. I assume you tolerate the sublingual methylcobalamin well? I have had difficulty with that one.

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Not sure if the methylcobalamin is doing much good. I don't have as much nerve pain in my shoulders. And get the odd day were my tinitus is very faint. Still have chronic fatigue. Waiting to see gastroenterologist for radiation enteritis has likely contributed to B12 deficiency. However, waiting list for this new clinic has gone up from 12 weeks when referred, to 36 weeks. 😞


Have you tried the methyl skin patches? That at least goes straight into the body. I have my reservations about how much of the sublinguals are being wasted via the digestive system (ie how much is actually being absorbed under the tongue) even if youre taking a high dosage lozenge/liquid.


Sorry, I meant to say that I too had low level hearing loss at the beginning. Especially when I was on the phone - it sounded like the phone was set to very low, but it turned out it was me who was low! My hearing has improved but its not back to what it should be.


Very glad to hear that you fought for yourself! As you know, many doctors don't listen. I don't suffer from hearing loss, but have horrible tinitis. I also have problems with my eyes, keep a close eye on those. No pun intended!

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