Does anyone else suffer with tinnitus and is there anything that can be done?

[UKGirl1966]

I have had low level tinnitus for a while but recently the volume has intensified. It’s a high pitch whine. I wondered if anyone has any experience of what causes it and if there is anything I can do to relieve it?

[humanbean]

Although I have no proven suggestions for helping tinnitus, I have read anecdotal posts suggesting that vitamin B12 supplements can help some people, but definitely not all.

I wouldn't suggest or recommend that people supplement vitamin B12 or folate unless they have had testing for pernicious anaemia if B12 levels are low.

The body needs sufficient folate in order to make use of B12 in the body.

[Lora7again]

Are you still only taking 50mcg of Levothyroxine? That is just a starter dose and you might need a increase. I had tinnitus when my levels were too low.

[UKGirl1966 in reply to Lora7again]

I had them tested recently and they were still in range but had moved to the lower end of normal. I was wondering if I should ask my doctor to up my dose slightly to see if that helps. I have had some joint pain and my sleep is terrible although I am not sure if that is down to extreme stress or the menopause. It’s complicated. Thank you for the advice.

[Lora7again in reply to UKGirl1966]

Just being in range doesn't mean it is right for you. A lot of people need their TSH to be 1 or lower and their T4 and T3 in the upper third of the range. Just to add everyone is different and you are experiencing symptoms so you might need an increase.

[MY04zzz]

I had this when under medicated - once T4/T3 was in top quarter of range - the tinnitus disappeared with most of the other remaining symptoms

[Kalicocat]

I have had tinnitus for years. It gets worse when my numbers are too low or too high. If your numbers are low and you have bad tinnitus you likely need an increase

[SlowDragon Administrator]

Results from previous post 2 months ago

Hi SlowDragon, I eventually have some results from my tests and would appreciate any advice you might have.

TSH 2.20

FT4 1.2

FT3 2.5

Ferritin 94.4

Vit D 46.3

B12 539.3

I asked you back at the time to add the ranges (figures in brackets after each result)

But never had reply

These thyroid results strongly suggest you are under medicated

TSH over 2 is too high for someone on levothyroxine

Cannot comment on Ft3 and Ft4 results without ranges added

Are you in the U.K.?

Vitamin D - can you confirm this result measured in nmol

If yes it’s nmol then 46nmol is far too low

Low vitamin D needs improving and GP should prescribe 1600iu everyday for 6 months

But likely best to self supplement

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

Obviously you need to know if cause of your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

With Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

2 good videos on magnesium

healthunlocked.com/thyroidu...

[UKGirl1966 in reply to SlowDragon]

Dear SlowDragon,

Thank you for your follow up. It's very kind of you to help. I have added the ranges

TSH 2.20

ulU/ml (0.3 - 4.2)

FT4 1.2

ng/dl (0.9 -1.79)

FT3 2.5

pg/ml (1.8 - 4.6)

Ferritin 94.4

ng/ml (13 -150)

Vit D3 46.3

ng/mL

B12 539.3 pg/ml

I'm not in the UK at present although I am returning next month.

I have private medical insurance at the moment so if you think any other tests would help I could get them done.

I take magnesium citrate, Vit D (better you) and I take sublingual B12.

I think you are right, my levothyroxine needs to be a higher dose and I will go to see my endocrinologist as soon as possible to suggest this.

Its such a muddle as different labs/different countries seem to use different units of measurement and sometimes different ranges.

I had my cortisol levels and inflammatory markers checked as I wondered if I had adrenal fatigue. I have had a huge amount of stress over the last 5 years and that has made a difference.

Your help and advice is invaluable.

Thank you again

[SlowDragon Administrator in reply to UKGirl1966]

So Ft4 is only 34% through range

Ft3 only 25% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Dose should be slowly increased upwards in 25mcg steps until Ft3 is at least 60% through range. Often Ft4 will need to be 70-90% through range to get Ft3 that high

Likely to need several further increases

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

[SlowDragon Administrator in reply to UKGirl1966]

So vitamin D is fine at 46ng/ml

46ng/ml = 116nmol

endmemo.com/medical/unitcon...

Important to always add unit of measurement.

We tend to assume U.K. units as it’s a U.K. forum

[jade9390]

I have it but cannot help you. My silly Gp believes having tinnitus is normal for most people and nothing can be done

[UKGirl1966 in reply to jade9390]

That's outrageous. The problem is that GP's are exactly that, General Practitioners. I actually go to pharmacists more and more now as they actually understand the drugs they are giving you and so the conditions also.

[jade9390 in reply to UKGirl1966]

It has sadly become water of a duck's back to me. I no longer bother with the nhs and expect gas lighting, abusive gps so self medicate. Yes, people should use them more. My friend is a pharmacist and has criticised the painkillers and most prescriptions which I have been given. Her knowledge is more up to date.

[UKGirl1966 in reply to jade9390]

I wish I new a pharmacist!

[jade9390 in reply to UKGirl1966]

She is an old school mate but I suggest asking any of them about any medication you are given and ask them if they know about something better. They are limited with Levo for thyroid thanks to NHS policy but ones I do not know have picked up on GPs giving me the wrong things and tablets which should not be mixed. Drs are useless, they not only gave me a mind bending anti depressants for pain but 10 times the usual amount. I had no pain but was tripping and given no help to come off them so was very ill for months.

[Hidden]

Hi, I have had tinnitus for several years and it has got worse over time, including a high pitched whine as you describe. I have been on 200 mcg of Levo for 17 years;I had low vit D and now supplement with BetterYou spray . I also take others - B12 spray, and Spatone iron . My experience is that the tinnitus has never gone away or changed.However, 18 months ago I was fitted with NHS hearings aids as I have age related deafness (I’m 67 in a couple of weeks) - and the tinnitus is less noticeable when I wear them.

I also find that, with or without the aids, my tinnitus is at its worst I in the morning when I wake.

I have never mentioned tinnitus to my GP .

I did mention it to the person who fitted my hearing aids but as I can’t remember what was said it couldn’t have been significant.

I really wish I could help : I know how annoying it is .

Best wishes x

[fiftyone]

I occasionally hear my heart beating in my ears and, if I reduce my T4 by even a small amount, it gets far worse and more regular. I call this tinnitus as it is noise in my ears but not sure what anyone else would call it.

[Thenightowl in reply to fiftyone]

Pulsatile tinnitus perhaps, that's what I get sometimes, along with various other sounds

[fiftyone in reply to Thenightowl]

yes,that's it....pulsatile tinnitus

[Thenightowl in reply to fiftyone]

Mine happened when ferritin, folate and b12 were low. On b12 injections for my deficiency now and haven't had it for a while.

[Hookie01]

Is it in both ears or just the one? I get a whirring noise in my left ear when I take vitamin D and recently started T3 medication and its started again. I stopped taking it and it stopped so I'm going to try another brand to see if it makes a difference as didn't get it last time I took T3 and its was a different brand.

[UKGirl1966 in reply to Hookie01]

It is in both ears. I wonder if it is my brand.

[Hookie01 in reply to UKGirl1966]

I have done a lot of research on this and its very common when people start taking levo and liothyronine. For some it goes away with med level adjustments for some it doesn't. Might be worth trying another brand or just adjust your meds first if you are out of range slightly as changing brands can be a nightmare also! Oh the joys!!

[UKGirl1966 in reply to Hookie01]

Thank you Hookie01, Its a nightmare to try and unravel.

[Hidden]

There is a company called flare audio, who sell 'calmer' ear buds.

I have some; they helped with my hyperacusis, and ETD. They didn't help with my tinnitus BUT they have lots of reviews from people saying they helped with theirs.

They're £30 so perhaps worth looking at and seeing whether you think they're worth a try.

[Etch43]

I have very bad tinnitus which sometimes is excruciatingly high pitched . No one seems to take me seriously - after I had my first dose of the pfizer vaccine it was incredibly loud for several days. I can’t get my blood tests done due to the pandemic and have had my appointment with the Endocrinologist cancelled. Due to moving house three years ago I am not know by doctor - in fact she with drew all my medication recently until I wrote her a letter to explain I had no thyroid due to cancer !

[UKGirl1966 in reply to Etch43]

It's frightening!

[Etch43 in reply to UKGirl1966]

I am thinking of trying to find an appointment with a private Endocrinologist but don’t know where to start

[UKGirl1966 in reply to Etch43]

I live abroad and wish that this was as simple to arrange in the UK as it is abroad.My endocrinologist charges around 20 GBP per visit, no question of going to a GP. It might be worth researching going abroad for some investigation as its quick and efficient. Combine it with a holiday somewhere. I have done this in Thailand (my first choice), Bulgaria and Cairo. Just a thought!

[Bearo in reply to UKGirl1966]

I suppose if you find an endo abroad it also needs to be a country that will post your prescribed meds to UK, or is that not a problem? How do you get your meds?

[UKGirl1966 in reply to Bearo]

I had no problem when I came back to the UK. I just showed the meds I had been given abroad. You can also ask for a prescription from your Endo and show that to your GP.

[SlowDragon Administrator in reply to Etch43]

Email Thyroid UK for list of recommend thyroid specialist endocrinologists

...NHS and Private

[e-mail]

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is under 2

When adequately treated, TSH will often be well under one. Most important results are ALWAYS Ft3 followed by Ft4.

When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

Essential to get full thyroid and vitamin testing, usually privately BEFORE consultation.

[jade9390 in reply to Etch43]

Wow

[humanbean in reply to Etch43]

That is absolutely shocking and terrifying! I hope you made a complaint, or at least got an apology.

[Raven55]

Mine started a couple of years ago. It’s intensified. I waited and waited for an appointment with a consultant only to find my appointment request from the doctor was lost . Then the pandemic arrived and of course shielding.

I find if I’m distracted it becomes less. I often put my headphones in an listen to music. Walking our dog takes my mind off it but stress increases the intensity and lack of sleep. Sometimes it’s almost gone but one bad night or anxiety and it’s back with a vengeance .