Tinnitus after RAI

[Shaf3938]

I am just curious and throwing this out there! Did anyone else have onset of tinnitus after RAI treatment for their thyroid or after they started taking Levothyroxine? I swear I never had issues until after I had the above two done!

[bantam12]

Well I had RAI many years ago and have taken Levo since, tinnitus only started about a year ago so I don't think there is a connection for me, Im waiting for an ENT appt.

[Shaf3938 in reply to bantam12]

Do you have the tinnitus constantly or does it come and go?

[bantam12 in reply to Shaf3938]

It's constant but sometimes not as bad as others and if I'm busy doing something I don't notice. I bought some special ear plugs which someone recommended but they don't work.

[Lalatoot]

For me it was one of my first hyper symptoms and came before any treatment.

[Shaf3938 in reply to Lalatoot]

Has it gone away now that you have levels optimal or under control??

[Lalatoot in reply to Shaf3938]

No it has been there for 14 years . Worse in left ear.

[Shaf3938 in reply to Lalatoot]

Gotcha! It’s something that I am getting used to! Some days it’s worse than others 🤓

[Lalatoot in reply to Shaf3938]

Yes I have spells where it is worse. Sometimes the right ear is nearly quiet too.

[tromashka in reply to Lalatoot]

It was my symptom of hyper thyroid before any treatment. Only with it for 3 months. Have doctors ever comment on it, tried to do something? Thanks

[Shaf3938 in reply to tromashka]

My endocrinologist believes it’s not related but I’ve never had it before so 🤣

[Lalatoot in reply to tromashka]

Never mentioned it really. Had lots of symptoms which were much worse. I have found that doctors and endocrinologists are not very good at knowing the symptoms of thyroid troubles and tend to dismiss things as not linked.

[Sagold in reply to Lalatoot]

So true. They don't understand all the symptoms

[Jazzw]

Haven’t had RAI, but tinnitus was the very first symptom my other half had when developing hypothyroidism. There’s definitely a link to thyroid issues.

[Shaf3938 in reply to Jazzw]

Has it improved with treatment or still there?

[Jazzw in reply to Shaf3938]

It did improve with treatment, yes.

[helbell in reply to Jazzw]

My tinnitus started with hypothyroidism too.

[Eyes-wide-shut]

Hi Shaf3938, YES I did get tinnitus and at its worst, a hiddious dizzy/drunkness that began the moment I got up to the moment I went to bed - completely debilitating. Can I ask if you have any eye symptoms - dry eyes, itchy, like you have hey fever, but not when you'd expect to have it, bunged up nose, tight head, like you have a too high fitting hat on that you can't take off?

My tinnitus & dizziness are definately related to my Graves' antibody levels, which incidentally sky rocketed after RAI - I wasn't warned of this, nor did they properly assess whether I had thyroid eye dieae (TED) before insistng I took RAI. I did have TED which wasn't that visible from external symptoms, but had I had an MRI or CT scan, they would have seen the swallen muscles that control eye movements.

Though the effects of RAI can't be reversed, I have now been seen by an excellent opthalmology team and I had a 12 week course of IV steriod to reduce swelling and waterlogging in my eye sockets and this was followed by an immunosuppressant (MMF). I take that now but when they 1st started to reduce the dose, my tinnitus and dizziness came back to they've put me back on a higher dose and all is well - thankfully.

I hope this is helpful and wish you all the best in getting to the bottom of your tinnitus X

[Hookie01]

I get it in my left ear but only when I take vitamin d and it started again when I started taking morningside T3. Currently trying to change my T3 brand to see if it makes a difference. Mines only really a problem when I've been laying down for a while, so worse when I wake in the night and morning. I've had RAI but haven't had it any other time.

[UKGirl1966]

I have constant tinnitus which gets worse when I am stressed. I have swapped medication though as suggested by SlowDragon as mine contained Mannitol. All of my symptoms have lessened with the change to a Mannitol free levothyroxine brand.Thank you so much SlowDragon.

[fiftyone]

I started getting pulsatile tinnitus when I reduced my thyroxine by 25mcg daily

[helbell in reply to fiftyone]

What does that sound like? Think I might have it.

[fiftyone in reply to helbell]

I constantly heard my heart beat in my ears. It was very annoying.. Sometimes stopped me from going to sleep. Sometimes it was continual, sometimes it came and went. Since I put my levo up again to its normal high level, it's gone but it hung around for a while. Can't put it down to anything else.

[helbell in reply to fiftyone]

Thanks. I think I have it. I complained to my doc about palpitations but it's more in my head. Thinking back to when I was hypo before treatment I think I had pulsatile as well as ringing. Ringing continues but always less when my levels are good.

[Wired123]

I think there’s a link with Vitamin D, a lot of people have commented about Vitamin D being the cause. I think it’s certain brands of vit D that are problematic.

[Dave99999]

Hi, I have had tinnitus for about a year which was either triggered by a change in blood pressure medication, or a when my almus levothyroxine tablets changed from actavis to accord. It may have been there prior to the change, but certainly became noticeable at this point. I also have ear / nose congestion and loss of smell. It also started with a high temp which turned out to be a sinus infection. Reading the white papers on ACE and ARB BP meds I think the likelihood is they are responsible however I'm not ruling anything out yet, but reading fiftyone's comment maybe my tsh level is responsible.

I am waiting for an MRI scan to be done for ENT diagnosis. The hearing test showed no issues. My tinnitus is definitely louder on 50mg losartan vs 25mg which seems to be common. I'm still trying to work out if medication is the cause. I don't think it was the RAI treatment for overactive thyroid as that was back in 2001 and this is recent. Pulsatile tinnitus can be due to high blood pressure and possibly when the blood flow increases after the arteries / veins, in / near the ears relax post taking bp meds from what I've read.

Has anyone else noticed a change in tinnitus since the change from actavis to accord?

I like to keep my tsh around the 1.0 mark where I feel better. This has been a battle as Losartan taken with levothyroxine definitely affects the uptake of the thyroxine. My tsh dropped and I needed an extra 50ucg to achieve the same tsh level. I came off the Losartan and went massively overactive from the case. Doctors only care about the 0.3-4.0 range which is massive when it's your level and not just what they are told is normal. What do others do?

Best regards,

Dave

[wimpyshrog in reply to Dave99999]

Hi Dave, have definitely noticed a difference. Didn't have tinnitis at all on Actavis or any other symptoms but started with it when brand changed to Accord also numbness on the toe end of my feet. Don't notice it when I'm outside as I'm occupied but what with bad weather and lockdown, not getting out very much at the moment so the tinnitis has been increasing in volume. I do wish they wouldn't muck about with rebranding, it does cause havoc for me!

[jacobite33 in reply to wimpyshrog]

Hope your well wimpyshrog!? (Just love peoples names on here!)

I have had different makes of levothyroxine since around 2015/16 with working around and having different chemists.Had a host of other issues and I’m now starting to think this could be the causes.First was tinnitus in my left ear in early 2016.Anyhow I thought accord was ok? Back on it again there for the last 6 days and ooooft! Racing heart beat and anxiety and nervousness.Everyone seems to point to Teva being a problem and your the first person I have came across with issues with Accord

Stay safe!

[wimpyshrog in reply to jacobite33]

Hi Jacobite, this is my first post. I don't usually get involved as what you guys talk about goes straight over my head T3 T4, ferritin etc etc, phew! I've never even been given a reading after my yearly blood tests, just told yes you're within the range. I must have been hypo now for about 10 - 12 years. Seemed to coincide with me going into menopause & this happened before I was 50. Again on brand change, I had a very good and patient GP when I started with underactive thyroid. I had to try a lot of brands before I found one that is suitable. My GP started me off on Eltroxin. Was absolutely fine with it when it was by Goldshield and then a few years down the line whoops! You guessed it, another brand change, rebranded as Mercury Pharma then, the problems started, one of which always seems to be numb feet for me. Had the pharmacist then tell me, 'no that shouldn't happen, I'd get a blood test for diabetes'. Had to try all different brands again to find one that suited which was Actavis. I was sick of being told 'oh they're all the same'. Well actually no they're not! Even my husband was beginning to think it was me just being 'flaky'. Am sending you a link (if you haven't read it already). It's a Prescriber piece written by 2 London hospital endocrinologists. The piece is not printed out as it was when I first read it but if you click on the PDF symbol it comes up. That shut my husband up when he read that! I rest my case.

wchh.onlinelibrary.wiley.co...

[jacobite33 in reply to wimpyshrog]

Hey wimpyshrog (sweet name )

I’m the same shooooom! Right over my empty cranium!

I’m more a wise cracker that talks in riddles and Leanne Rimes than wise owl.Honest!

Just a boy from the Scheme (yup the tv programme the Scheme) that has to take things in slowly and then try to put it down properly so folks can understand me and not think I’m being rude or cheeky.

I only got my first thyroid test 8 years after first being diagnosed and that was from a doctor where I was working in a different area.That doctor sent a note to keep an eye on my thyroid that they never bothered getting back to me (same as they never mentioned I was to be checked yearly)as they said all was ok.Tee Tum Tee Tum,hmmmmm?

I have numb feet (smelly feet too at times) pins and needles in my arms fingers and toes

This site has honestly been a god send with the people and advice.Brilliant!

There you go “flaky”? Along with that sexist and derogatory saying “neurotic woman”? “ITS A LOAD OF”? Mary Mary white contrary how does your garden grow.With a lot of “DUNG!”

Will have a read of the link later (supposed to be working ssssssh)

Take care!

[wimpyshrog in reply to jacobite33]

Hi Jacobite, would appreciate you sending me a link to reply to you personally - I need to apologise. Thanks

[helvella Administrator Thyroid UK in reply to wimpyshrog]

You can just click on jacobite33's name or icon - or here: jacobite33 - that will open up his profile. Then click on Message.

[jacobite33 in reply to wimpyshrog]

Pssst wimpyshrog (honestly peoples names make me smile on here!)

Ah so this is the post

No need to apologise or seek my forgiveness!

I totally understand where your fears and frustrations were coming from! Now I’m more concerned that your feeling more upset.I sincerely hope not! Your on here to seek advice to better your health and ease your worries and fears please don’t let that stop you or hold you back from communicating with others

I need to learn to stop making silly wise cracks so it’s me that should apologise.So from the heart I am sorry!

They named a flower after me DAFTodil (see there I go again)

Please smile and stay strong and I genuinely wish you well!

Oh and I’m going to add to follow you if you don’t mind?

Stay safe!

[wimpyshrog in reply to jacobite33]

Hey - keep the wise cracks coming or I will be miserable! Thanks for understanding that old wimpyshrog was just being a prat. All the best.

[jacobite33 in reply to wimpyshrog]

Totally understanding!You too girl!

[Popsta]

Yes I have had it since starting Levo and it’s getting worse however have also found out that you get tinnitus on oestrogen levels dropping so could be perimenopause ?

[TRbo]

Mine started after a new batch of thyroid medication from Thailand three years ago but since I’ve been on Medavive it seems to have gone.

[jacobite33]

Ladies ladies ladies mind if I pop my oar in and ask a few questions?

Just looking in to cervical instability and just general gumf like that as I have hypothyroidism and also lots of neck issues with swimming work cycling (falls with that one sober and drunk sssssh! Fun at the time.Well you do have a relaxed few beers but have to cycle back)

The thyroid is in the neck.I have tinnitus both ears and the global hum (got my own view in that one) Feeling of fullness in the ears and neck pain with limited movement.Do any of you have neck issues?

Stay safe folks!

[contentedmum]

My tinnitus started 5 years ago after improper dental amalgam removal. I'm currently following a protocol to remove heavy metals and my tinnitus has gotten a bit worse. Apparently, according to my FMD, it's mercury related as are many thyroid issues, like mine. I've had ENT appointments and they didn't do anything for me. Apparently my hearing is still in tact, when I'm in a vacuum sealed room. Difficult to hear clearly when there are a million other sounds that I can't block out. Apparently when you are well rested tinnitus is less loud?

[Dizzy938]

Well I have got it now but don't remember having it before I started taking levo so you may have something there.

[Shaf3938 in reply to Dizzy938]

Do you have it constantly in both ears?

[Dizzy938 in reply to Shaf3938]

No just the left one

[Batty1]

I have always suffered my whole life pretty much with tinnitus and found after my thyroidectomy my tinnitus has significantly reduced although not gone. I also take Igennus super B complex which also helps with my ringing.

[Shaf3938 in reply to Batty1]

Yeah it’s crazy I’ve never had it constant until my diagnosis and treatment! But it seems like thyroid issues and tinnitus could be linked

[Batty1 in reply to Shaf3938]

Yeah Im definitely convinced of the connection. I think unfortunately for me I had hearing and tinnitus for many years and the damage is done but at least its not insanely loud now or causing crazy vertigo.

[Sagold]

Tinnitus is now for 2months, comes and goes. RAI was 3 years ago. On daily levothyroxine for 2.5 years.

[rick2525]

Hi. I've just picked up on this blog. I suffered from Tinnitus and sleep disorder prior to been diagnosed underactive last August. Started on 25mcg levo and increased gradually to 100 mcg .I had never suffered tinnitus in my life. After been on med levo for 3 months the Tinnitus stopped and I joined sleepstation to get my sleep pattern restored. Up until 3 months ago I was on Teva. Terrible side effects Switched to Accord. Still on Accord 100mcg tablet. Seems to be a common thread here of Tinnitus and Thyroid disorder. GP's just seem as though they cant comment on it.

My main problem developed since 20th Feb is fatigue and night sweats. Covid jab done 18th Feb. Anyone else experienced this? My CT scan in Feb came back clear. Also had testosterone and PSA all normal.

[Hidden]

Hi Shaf

I had tinnitus for 40 years and finally managed to get rid of it last year just by redefining what it actually is - NOTHING!

If interested, please see my post from a year ago.

Thanks

Alps

[Shaf3938 in reply to Hidden]

Do you have a link to the post by chance? Thanks!

[Hidden in reply to Shaf3938]

Hi Shaf

Click on my user name and my Profile and a list of my posts comes up.

Scroll down this list to a year ago to my post entitled "This New definition I have given T has really helped!"

Thanks

Alps

[Shaf3938 in reply to Hidden]

Found it thanks! That’s good how you were able to get rid of it! I’ve never had it before until the RAI and the Levo so I’m still claiming it’s one of two or the combo of both!!