Tinnitus: I was diagnosed with B1... - Pernicious Anaemi...

Pernicious Anaemia Society

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Tinnitus

soos profile image
soos
6 Replies

I was diagnosed with B12 deficiency 2 and a half years ago. I had been ill for a long time prior to diagnosis. Just before diagnosis I had tinnitus and was referred to audiology. I had an MRI but the structure of the ear was found to be ok. The tinnitus eventually went away. Unfortunately, it has returned and has been constant for over a week now. Will increasing my B12 injections be of any help?

Thanks for reading.

Soos

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soos
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6 Replies
Sleepybunny profile image
Sleepybunny

Hi,

I found that my high pitched tinnitus disappeared when I started B12 treatment but it does return periodically. I think when it returns is linked to when my body needs more B12.

I have other types of tinnitus and B12 has made no difference to these.

tinnitus.org.uk/

How often are you getting B12 injections from NHS?

Tinnitus is usually considered to be a neurological symptom. Do you have other neurological symptoms?

In UK, people with B12 deficiency where there are neurological symptoms, are supposed to get more intensive B12 treatment than those without neuro symptoms.

UK B12 treatment

1) BNF (British National formulary) Chapter 9 Section 1.2

evidence.nhs.uk/formulary/b...

2) BSH Cobalamin and Folate Guidelines

UK B12 treatment info is about a quarter through document.

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Who gets PA and B12 deficiency?

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

B12 books

Both mention tinnitus

1)"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

2) "Could it Be B12" by Sally Pacholok and JJ.Stuart

"I was diagnosed with B12 deficiency 2 and a half years ago"

Did you have an IFA Intrinsic Factor Antibody test? This can help to diagnose PA (Pernicious Anaemia) but the test is not always reliable and it is possible to have PA even if IFA test result is negative (called Antibody Negative PA).

I am not medically trained, just someone who has struggled to get a diagnosis.

JGBH profile image
JGBH in reply toSleepybunny

Hi Sleepybunny,

So how does one know if one has Antibody Negative PA? Tricky...

Sleepybunny profile image
Sleepybunny in reply toJGBH

In UK, my understanding (I'm not a medic) of the "BSH Cobalamin and Folate Guidelines" is that if a patient is symptomatic for B12 deficiency, IFA test is negative, all other causes of B12 deficiency have been excluded, and patient responds to B12 injections, they should be diagnosed with Antibody Negative Pernicious Anaemia.

See BSH Cobalamin and Folate Guidelines flowchart below

stichtingb12tekort.nl/weten...

Gambit62 profile image
Gambit62Administrator

its possible that more B12 could help but there are lots of things that can cause tinnitus - including raised blood pressure.

ljmulledy profile image
ljmulledy

I inject weekly....i am three plus years into treatment. Incrementally better all the time. Symptoms have all but disappeared. Thought and mood swings are the only residual, but through meditation i have been able to guide thought and moods. Meditation has become a daily part of my life. Weekly b12 Injections, and daily diet, exercise and mindfulness.

topazrat profile image
topazrat

I developed tinnitus about a year before diagnosis. Although it's quieter now, it is still there. I've had an M.R.I and E.N.T consultation too and nothing was found. Oh, how I long for silence.

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