Tinnitus

[Diane57]

Hi I have PA, I have 3mnthly injections and have started taking B12 tablets. My main problem is tinnitus , it is driving me mad, it is constant,and am now getting headaches. I went to the doctor but they said there is nothing they can do. Can anyone give me some advice on how to cope. I find it hard to get to sleep, and when I wake up it's just constant noise . HELP xxxxx

[Gambit62 Administrator]

I also have tinnitus but it doesn't generally impact so I can live with it.

Sometimes it is caused by high blood pressure so, if you drink coffee or caffeine filled drinks it might be worth laying off them for a while.

Tinnitus is a big issue for the charities for the hard of hearing so it may be worth looking at a few sites like this

actiononhearingloss.org.uk/

actiononhearingloss.org.uk/...

There are different causes of tinnitus and the second link would seem - only read the title - to give some hints on possible treatments.

Shame there are so many conditions that doctors just seem to write off as 'nothing we can do' rather than doing some homework.

[Diane57 in reply to Gambit62]

Hi thank you for you reply, I will look into the info you sent.

I do not drink a lot of caffeine drinks. I agree that doctors just pass things off as nothing we can do and because I never seem to see the same doctor they don't even bother to look at your notes. The last one said I didn't have PA,and wanted me to go for more blood tests then she read my notes and saw I did have it. I feel what is the point I'm just waisting my time.

[toadie93 in reply to Diane57]

Hi I'm also having a mare with tinnitus and I've also got PA my gp told me to down load white noise to help when I sleep this was after I'd spoken to another and got the say reply as you. I've not tried the white noise for long as I struggle with noise when I turn out the light replacing one noise for another.

[Sleepybunny]

Hi,

I've assumed you're in the UK.

I found that my tinnitus diminished when I started taking B12.

How long have you been on B12? Do you know your current B12 levels. Have you had folate, ferritin and full blood count tests recently?

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

b12deficiency.info/signs-an...

pernicious-anaemia-society....

There is a symptoms list in library section on PAS website.

"I have 3mnthly injections"

This suggests you are on the standard treatment for B12 deficiency without neurological symptoms.

The treatment for B12 deficiency with neurological symptoms is more intensive than you are receiving.

The info can be found in the BNF (British national formulary) Chapter 9 Section 1.2 which all GPs have access to. Its possible to buy a second hand copyof the BNF fairly cheaply. The BNF is copyrighted so I can't reproduce the info but the following link contains similar info. Scroll down to Management section.

patient.info/doctor/pernici...

bnf.org/

Info on treatment of B12 deficiency both with and without neuro symptoms can be found in the "BCSH Cobalamin and Folate Guidelines"

This is a long document that came out in 2014 so is fairly recent. I printed out a copy of the whole document and gave it to my GP. I found page 29 useful, a diagnosis flowchart. I was told that the NHS should be following this document.

Other useful info

tinnitus.org.uk/

This charity can offer support to sufferers of tinnitus.

patient.info/doctor/macrocy...

b12d.org

martynhooper.com/

Books

"Could It Be B12" by Sally Pacholok and JJ. Stuart

"What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

[Diane57 in reply to Sleepybunny]

Thank you for your reply. Yes I do live in the UK. I have been having B12 injections for 3yrs. But over the past couple of weeks my tinnitus seems to be worse, I went to the doctor, she doesn't think PA has anything to do with it. I do have hearing loss and have 2 hearing aids,but I find it hard to get used to the background noise I get with them.

I will look into the info you sent. I don't think doctors know much about PA, and I never seem to be able to see the same doctor. They don't have time to take much interest in what you have. The last one I saw said I didn't have PA and wanted to send me for another blood test, until she read therther on and saw my blood results, then said I did.

[Sleepybunny]

Hi,

I also wondered if you had ever had thyroid tests. Tinnitus can occur as a symptom of thyroid problems. It is not unusual to have both thyroid problems and B12 deficiency together. The Thyroid UK forum on HU is very active.

thyroiduk.org.uk/tuk/about_...

My tinnitus is relatively mild compared to some sufferers and I notice it more when I'm somewhere very quiet or at night. I have a pulsing form which sounds a bit like a pump on a fishtank and occasionally high pitched whistles. On the occasions I find it irritating I try to imagine that it forms part of a piece of music which helps me cope better.

Were you diagnosed because of a positive IFA (Intrinsic Factor Antibody) test?

The symptoms of PA/B12 deficiency can overlap with the symptoms of other conditions eg thyroid problems, lyme disease, coeliac disease. Were other possible reasons for your symptoms excluded? PA is an auto-immune disease and sadly they sometimes occur in clusters.

lymediseaseaction.org.uk/ab...

coeliac.org.uk/home/

hughes-syndrome.org/about-h...

b12deficiency.info/misdiagn...

[2Old in reply to Sleepybunny]

I was thinking Thyroid too, only the meds. I had tinnitus before I started taking B12, Magnesium and D3. It then went away for about 2 years. I recently was diagnosed with hyperactive thyroid, but didn't have any ringing until I started taking Atenolol (a BP drug they give to help with the symptoms of overactive thyroid) and Methimazole (the thyroid med itself). I think it is probably the Methimazole that is doing it, since I took the Atenolol for a week first without side effects, but have had a lot of side effects with the Methimazole.

Diane57,

If you are on any other meds, high concentration of herbs or spices, or even a high concentration of different vitamins, that could also be it besides thyroid problems.

[19191919]

I had constant banging in my ears and vertigo. The banging went after the injections and iron tablets. The vertigo is improved but I do still get it. There is an exercise on the internet that really helped me and still does. I do still get the banging sometimes but it is not nearly as bad. You need the injections and should discuss with the doctor having them more often. Good Luck x

[JudithML]

For your tinnitus, ask your GP for a referral to a consultant audiologist.

He/she will have a number of options. One of these might be cochlear implants. My sister had these with great success after years of tinnitus.

[Diane57]

Thank you I will do that