Pernicious Anaemia Society
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Tinnitus - B12 deficiency

Hi all,

Just a short post this time. I've noticed my tinnitus has come back full swing! Just the past 2 weeks id say I noticed it ... but then today and yesterday it's been so bad I've literally asked my mum does she hear the noise too or is it in my head. Almost feels like pressure too...like I'm in a plane? Like my head is being squashed? I'm still on every other day SI b12. .. co factors etc i Wonder is this my nerves or something waking up or am I missing something here? (Just in advance I am waiting on a few more tests to come back regarding thyroid and hollow tc...so I know there may be another underlying cause but just wondering has some of my vitamins perhaps dropped because the b12 SI are often they are draining levels? Or maybe this is silly I don't know)

Thanks for any replies☺☺

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Yeah similar here, mine was really loud for days plus the occasional plane pressure thing like you mention. My feet and hands have been going hot and cold, tonight after 6 consecutive days of SI is the first time they're both hot at the same time.

I think it's the body starting to get used to having B12 in it again. That's what I've read and it feels like, so going with that in my mind!

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Oh OK, hopefully that's what it is. I've read about the body getting used to b12 also .... but keep questioning it 😂 get paranoid something is out of sinc again you know.....the ringing is so loud. yea my feet are stone cold...I've been injecting for about 4 weeks now and they have never warmed up. Maybe someday 😂

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Yes it's truly amazing just quite how much B12 affects us - this time last week I was suffering from subacute combined degeneration and couldn't hardly stand up, walk down or upstairs, and was walking into walls. I was trying to figure out how to self-inject but kept forgetting what I was doing every few seconds.

Now 6 injections later and standing up straight again. I think it's a sign of how far there is still to go. At least the paranoia is less now as well, that only depleted the B12 even quicker!

I'm so glad for these forums, dread to think what would've happened if I'd had to wait another week for my NHS prescribed injection... and then the one today was cancelled cos the nurse was ill. SI FTW!

Good luck on the warm toes, keep going & am sure they'll return... I honestly don't remember the last time mine felt warmth!

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Wow that sounds awful I really hope you improve.... yea I agree this forum and others had been a life saver. They have literally guided me back to better health....if it was left to my gp then I dread to think where I'd be ☺

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Thanks for your thoughts mdoh1918 yes we are lucky indeed! I was thinking about this the other night - we do expect a lot from the NHS and so on but they are all relics of the pre-internet era and from the industrial age so there is going to be this cross-over period where we're all connecting via the net, sharing and discovering stuff and at the moment they're just being sold stuff by business that has to make money so even then we don't get the 'perfect' solution to all this.

Times, they are a changin!

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I also have freezing cold feet. The GP said it was nothing to do with B12 and I have poor circulation. Funny how they were totally fine 6 months ago! I despair.

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I beg to disagree with the doctors on this one. My feet are freezing during the day and take a lot of warming up. Some nights they go the other way and feel way too hot!!

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yes... me too

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Circulation.... friends keep saying that to me too..... bit my circulation is fine sure I'm always warm? Anyway my feet burn alot as well so I know it b12 related.... some people are either ignorant to what b12 can cause or like the suggest a simple thing that isn't related at all. Can be very frustrating....even with the whole depression side... friends are determined to tell me I can fix it either exercise 😂 but I only feel low when I haven't had my b12 injection.... just difficult ares it's not very well known about .

Thanks for you reply ☺

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I described these exact symptoms to my GP last time I went in; his response - steroid nasal spray and an unwillingness to budge on once every 3 mo B12... By the way i also get the feeling of very cold feet (and hands) these days too

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Hi there I've never has cold feet tingling yes but not cold. As for the tinnitus it should calm down, mine was really bad but has calmed down a lot over the past 6 months I only get it just before my next injection is due and I was diagnosed just over 2 years hope this helps x

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yes, my tinnitus comes back just before an injection - although the neurologist went blue in the face when I said this was a symptom!

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I have it without fail every time my injection is due. It just goes to show how little they really know x

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Hi,

For me, high pitched tinnitus seems to come back when I need more B12. I have pulsing tinnitus but sadly that appears to be permanent.

"I am waiting on a few more tests to come back regarding thyroid and hollow tc"

The fact that you are SI B12 may affect the results of hollow TC test (Holotranscobalamin/Active B12).

active-b12.com/frequently-a...

Which thyroid tests are you having? GPs sometimes only order TSH test which won't give a full picture of thyroid function.

thyroiduk.org/tuk/testing/t...

Might be worth posting your thyroid results on Thyroid UK forum on HU.

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HI thanks for you reply, I actually got the hollow tc done around 5 weeks ago...maybe longer but before I starting SI so that's not a problem. I have a feeling they have lost my test as it was sent from Ireland to London and my gp doesn't seem to know anything about it. So an annoying....and yep the gp would only do TSH so yesterday I drove to dublin to a private clinic where they are testing thyroid antibodies and a different one I just can't Rember the name of this minute in time....but it should give me a better picture of thyroid issues. I am going to post the results on thyroid forum as soon as I get them ☺ hopefully in 3 days.

Hmmmm Im injecting every other day so didnt think id need more 😂 or else I could do every day, I did this for a while a week or so ago....maybe I do....i don't know but the ringing is awful at the moment. 😦

Thanks anyway for you reply ☺

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How are your iron levels? I get tinnitus when my iron levels get too low so it may be worth looking into other things like this too. There are a bunch of things that can lead to tinnitus... :-(

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Hmm yeah maybe....I think my iron dropped a few weeks back coz all my old symptoms came back..... my mum recons that perhaps as I was SI everywhere day that I needed a stronger iron supplement as ithe was depleting that :/ so I started taking ferro sulphate 3 times a day....every thing haso improved except the tinnitus 😐😐

Thanks for your reply

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What were your ferritin and or iron results? Is this GP prescribed iron tablets or are you self medicating with them? It is best for a GP to monitor your iron levels while on iron tablets as high iron can be dangerous.

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I'm self medicating. ... my gp thinks all my results are within "normal range " and after getting loading doses says I don't need iron etc to be rechecked. So I have no choice but to medicate myself 😐.. luckily my mum is a nurse and knows a but about it all so she is keeping an eye. But obviously it would be better if my gp would monitor me but she won't :/

My ferritin was low that's for sure...I don't remember the exact result in have it here somewhere. But it was definitely low that's when I started on gentle iron... ☺

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Hi Mdoh1918- I also have tinnitus associated with ENT problems, but

on fine days it is better than damp wet days- think air pressure affects ears. I have never had B12 tested but have a goitre which is usually returned as just under the normal, but think thyroid as well as pa might affect tinnitus. I know that for absorption of iron, a combined vitamin c and iron preparation is recommended. If you can ask your GP for a slow release iron with vitamin c tablet, it may help

your absorption. If you over dose yourself, it can affect you, as you already know, so may be you should stop taking the iron and boost your vitamin c to 1000mg a day. I read there is a vitamin B12 cream which if rubbed behind the ears can really help tinnitus.

I think it's called Maxasorb cream but it comes from US so you may have to pay customs duty as well as international postage.

I do head exercises from side to side very slowly and up and down the same - I usually hear granules in my neck crunching. I looked this up on u tube, and found that many people have the same, granules

sensation - but was unrecognised by leading ENT surgeon specialist.

The head exercises improve balance which I have with inner ear

inflammation with colds and infections.

Think it helps a bit with the tinnitus too but am sure you are right about the vitamin B12 in your case.

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My tinnitus seems to never go away regardless of if I'm ready for my next load of b12 shots,I've previously asked my audiologist if being b12 deficient and having p.a could have contributed to my tinnitus but b12 deficiency,p.a,and having tinnitus is so complex it's hard to say if they're all connected,I can say personally though that when I'm having bad days it sounds as though someone has turned up the volume and my tinnitus is so loud,yet on the odd days it doesn't seem as though the noise is there at all,I've habituated now so most of the time I can sort of ignore it,especially if I'm having a good few days,but getting bad days makes it extremely noticeable,all my b12,p.a,tinnitus and pancreatic problems seemed to come on at around the same time,I'd never had any of these things before,so unless it's all coincidence,I'd have to say that in my own opinion,having b12 def,p.a,pancreatic disease and other gastrointestinal problems are all connected to b12 deficiency and pernicious anaemia then on top of that we get neurological effects,I have a g.p and hospital consultants that are really understanding,I think if we could all get that,then suffering with b12 deficiency and pernicious anaemia could be a lot easier to live with,we all need that because unless you suffer with b12 deficiency and pernicious anaemia,nobody knows what kind of he'll it puts us through.

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It's great you have a good doctor 😊 that's so important. ..mine literally doesn't know what's wrong with me and won't entertain the idea of b12 deficiency...pernicious anemia because after my loading doses my levels shot up (obvioisly) and now doesn't think I need it. So going down the specialist root but it's expensive is all

Wish you well and thanks for your reply

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That's what I had a problem with I had to explain as you stated,obviously my levels would shoot up and balance once I had my injections,it took me a while to convince him to do my blood tests before just to show him how low my levels were,I had a word with my nurse who convinced him that bloods needed doing before,not after,when he finally relented it became obvious that what I'd been telling him was fact,I got apologies all round and he now listens to me as in his words "you suffer with this,you know more about it than I do,so I need you to tell me how it affects your life on a day to day basis" this is the problem in getting our g.ps to actually listen to us and then take it serious,I'm now under the integrated care team and I have a nurse who comes once a month to to keep a check that everythings ok,by doing this it saves keep going backwards and forwards to my g.p surgery,I do have other underlying illnesses as well so these visits keep a check on those as well,it's a system I'm happy with and my g.p and consultants are happy with,it should be a system that everybody should or could be entitled to,but I think it depends on each individual's circumstances regarding their illnesses,but the problem is in getting everyone to listen and take you seriously,that in itself does nothing to make you feel as anything is improving and can lead to such despair that I became convinced life just wasn't worth it anymore,fortunately people did listen to me but not everyone is as fortunate as me but I remember how hard it was to keep trying to tell them how it was affecting me instead of them thinking they knew how it was impacting on my day to day life,it's a lot easier now thankfully,but I know there are people out there that are struggling to be heard and that rattles me that they're not being taken seriously.

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You have a lot of health problems - the B12 should be taken with folates from food as first choice or with folic acid(b9) to help absorption. I too have diabetes a form of pancreatic disease, but like you am plodding along, but do find vitamin c in 1000grams stops my gums bleeding on occasion, and helps circulation and inflammation.

Latest research from the USA, suggests large doses of vitamin c are helpful with the

mucous linings of your ears nose throat and chest, stopping heavy mucous clogs.

If you go on global healing website you may find interesting articles about B12 and folates. Wikipaedia is also useful for symptoms such as tinnitus related to vitamins.

Hope you find the answer to the tinnitus Fenty, but as mentioned to Mdoh there is a cream with B12 if rubbed behind the ears is advertised for relief of tinnitus. I have not read any reviews of the product Maxasorb - US product but Iogged on about at least five months ago so there may be more info on it.

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Hi I have injections every 4 wks, have done for 2yrs after my loading doses.

My injection is due tomorrow and my tinnitus has been quite loud this week.

My feet tend to tingle and burn so sometimes I wish they were cold! We always want the opposite don’t we! 😂

I know I’m lucky to get monthly injections but I was undiagnosed for over 10 yrs so ended up with damage mainly to my feet.

I’ve not really mentioned the tinnitus as I wasn’t sure if there’s anything my Doctor can do to help with it?

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Hi sleepy from wales - my feet are always cold at night - read wearing socks helps you sleep - I find an electric blanket to heat the bed is invaluable, and wearing loose cotton socks can help too to aid sleep There was a recent article on how wearing socks can help people sleep, on MSN news recently.

I had burning and tingly feet before having an op, which cured it over night.

Think the circulation was affected. I also had when taking some b vitamin for chilblains

not sure if it was nicotine based or niacin. Another cause might be some additive

to the B12 taken. There are certain substances used in B12 injections which may include methyl which may have a bad effect on your nerves and nervous system.

Gambit62 P.A. S administrator might be able to enlighten you.

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I didn’t know about the additives I’ll see what I can find out. Thanks. 👍xx

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