Hello all. I am hoping that someone on here has some experience that is similar to my own, but successfully got to the bottom of it.
I have been on MercuryPharma Thyroxine alternate 25mcg/50mcg for a couple of years and developed strange hearing problems. I work in a normal office, with sound levels sitting around 60 dBA most of the time, so it is not a noisy environment, but when I get home in the evening and move to the quietness of my house, I get a temporary hearing shift that sounds like I have just walked out of a night club. This lasts anywhere from 15 minutes to an hour, before my hearing settles down again. Oddly though, if I stop the Thyroxine for 2 days, it does not occur, start it again and 1-3 days later it is back. It is totally repeatable and makes no difference what the dosage is. If I just take half a 25mcg for those 2 days (12.5mcg), it doesn't go, but make it 0 and guaranteed it will disappear... and I do mean guaranteed, I have tried this 5 times now.
The level of testing includes the last couple of weeks of completing stopping Thyroxine (Iknow, I shouldn't do it, but I needed to prove to myself that I'm not mistaken), during which, there was absolutely no issue with the shift in hearing at all, now, back on it, starting at 25mcg, it has returned within 2 days. My GP and every other specialist I have seen looks at me as though I am mad. At first it didn't really bother me, but I am starting to feel that recovery is taking longer and longer and I am starting to develop a ringing in one of my ears and I am convinced that damage is being done.
Any help from someone with a similar experience would be greatly appreciated. I am 34 and hearing tests show that I still have very good hearing from my age, with good balance between the ears.
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Owen1
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Owen this is very strange.. I have exactly the same problem only
The buzzing and ringing is there permanently. I also use mercury pharma 25mcg and 50mcg. I also don't notice it when I'm moving about. I was going to make appt to get checked out as I'm having other problems with thyroid aswell.
Not that I am suggesting it, but have you ever tried stopping for a couple of days to see if it goes/quitens? As I said, for me, this is a repeatable experiment - I actually run a department where I work that does test and measurement, so I have carefully removed all other possible influences. In fact, I am presently in a very quiet office away from the normal office thrum and I have heard the noise come back and slowly, over the past 30 minutes, it is starting to quieten down again - hopefully, as per normal it will go again soon.
The worst part is that over the past few months, there are sounds that seem to be permanently present, I have never had hearing problems in my life and I am convinced that whatever mechanism is causing this is going to cause significant damage to my hearing over time. I'm not sure if the answer is to try and stop Thyroxine completely, change brands, or see if I can get Armour, none of which gets any support from my GP.
No I haven't tried to stop ad I never thought of thyroxine being the problem. I would be scared in case some more symptoms appeared as I am really not doing good atm. I thought it might be a b12 problem but my levels are at 2000 so don't think it could be that. I hope someone else can shred some more light on this...it's driving me bonkers.!!!
Me too. Sadly the next step from the ENT seems to be more drugs to deal with the ringing, rather than try and work out why thyroxine causes it in the first place.
Hi Annette. I notice you have had low B12 in the past and although your serum B12 levels may be high, it does not necessarily rule out a B12 deficiency, as you may not be absorbing sufficient into your tissues.
Extreme fatigue, tinnitus, tingling and numbness are a few of the neurological symptoms of B12 deficiency/PA, often interlinked with other autoimmune and absorption issues, and should be treated without delay :
Hi polaris I know and I really don't know what to do. Ihad Itintrinsic factor test come back negative but I know it isn't a reliable test. My b12 was 250 to start with but doc wouldn't give injections. I supplemented with jarrows methyl 5000mcg and felt brilliant for about 4mths. Since then I have felt dreadful again. I have every symptom of pa. I have appt again with doc on mon and don't know how to convince him I need injections. He told me I have health anxiety.
It is so depressing that GPs are still ignoring the latest BCSH, UKNEQAS and NICE guidelines and research. The link above gives advice on writing or emailing your doctor before appointment with useful templates.
You could also include this link of the latest BMJ research document, and take summary (in case GP doesn't read the full document):
The most important thing to remember is that there is a short window of opportunity before neuro damage becomes irreversible so it may be that self injections might be the way to go if GP still won't treat (lots of advice from HU PA site).
Thanks Polaris. Yes I'm very depressed atm. I will print these out and I'm taking hubby with me for support. Wil let u know how I get on. Thanks again.
Hi Owen, this is strange, I also have tinnitus,and had assumed like Annette that it was due to my B12 problems rather than the thyroxine. I've been on thyroxine for over eight years, but thinking back, the tinnitus began several years ago. I used to wander round the house trying to find the source of a noise, which was actually in my head. It took a while before I realised this, as it was only noticeable at night, once everything else was quiet. I've never tried stopping the thyroxine, and wonder if by now, any damage will be permanent. MariLiz
Thanks for responding. I wonder how many people this might affect, but the connection has never been made sufficiently to be published on the list of known side effects - I have spoken to my GP and 2 specialists and it is instantly dismissed as being unrelated (despite the fact that I am certain and producing experimental data is my job).
The only reason I really made the connection myself is because I have generally been in good health for most of my adult life, until severe lethargy resulted in me being diagnosed with thyroid issues. It took 2 years from this date to be started on Thyroxine and despite the tiredness, I was still in otherwise good health. Shortly after starting Thyroxine, I started to suffer with lots of strange problems that I had never had before, ranging from dry mouth and ulcers under my tongue, through to itching and the ringing in my ears. In the end I got sick of being given drug after drug to try and manage these new problems, so I decided to see what would happen if I did briefly stop taking Thyroxine and sure enough, these other symptoms also disappear.
I did once find what appeared to be a reasonably reputable website that did include soreness in the mouth and elsewhere on the body as rare side-effects of Thyroxine though, so it isn't totally unknown.
I have had a hearing test recently by an ENT consultant and although only conducted at a few, limited frequencies, at those frequencies, it still shows good balance between the ears and I still sit in the "normal" range of hearing, so there does not appear to be "damage", but as I mentioned in my first post, I still do have noise in one ear that turns to a ringing sometimes - but it is a totally different level of noise to the ringing I get when taking Thyroxine. When I stopped for 2 weeks, I did notice that on a couple of occasions it did disappear, so I feel that if someone would take this seriously, maybe I could be tried on something else, perhaps "natural" thyroid and maybe I would get the benefits, without the side-effects.
Incidentally, would you mind telling me what brand of Thyroxine and dosage you are on?
Hi again Owen, I am on 100 micrograms, and currently the brand is Mercury Pharma. My pharmacy do tend to give me different brands, and I have read on this forum that some people have problems with the fillers used in some brands. It sounds as though you are going to investigate this a bit more, it will be interesting to see if anyone else responds. The added complication with me is that I take several other pills as well as thyroxine. MariLiz
Owen1, I had problems with what I could only describe as tinnitus whilst taking levothyroxine also. I stopped and started like you to see if it was that that was causing the problem. I am in no doubt that it was the thyroxine. I mentioned it to the endocrinologists, but they were not interested. I have recently begun a trial of naturethroid (which I purchased myself) and my hearing is a lot better; in fact I could 'feel' it going away.
Hi Rebekah, Thanks for your response. I was really pleased to read that someone else has encountered the same problem as me and that the natural thyroid alternatives might give me the hormones I need without being left with ringing in my ears. I wonder if you could give me any information as to how you went about getting it and where it was bought from.
My own GP thinks that thyroxine is thyroxine, so I doubt this is going to be easy...
Hi fellow sufferers - My tinnitus also started after a few years on MercuryPharma thyroxine. Would love to check it out by stopping - just temporarily - but having enough problems introducing T3 to my T4
You have my deepest sympathies - the latest plan from the ENT was a low dose of amitriptyline to try and get me to sleep - it hasn't worked and it is ototoxic, so after a failed week, I am going to stop taking it - I really don't want to compound the problem.
Not that I would ever recommend it, as I know nothing of your personal circumstances, but for me, it is scary just how quickly my hearing improves if I stop taking it - fewer than 3 days after stopping it, the loud ringing I hear during the day reduces to a "Morse code like" sound that I can manage to ignore, but oddly, the ringing noise I hear when I lie down does not change as significantly - this also does not immediately appear, but takes around 10 minutes to develop.
The ENT insists that it is simply because it is quieter when I am lying down, but why on earth would my living room be quieter if I am lying flat on my back compared with sitting upright on the same sofa?!?!
Ever since being diagnosed with an underactive thyroid, I, for one have really lost faith in doctors in the UK - and this is not just the NHS, the private doctor I have seen has been no better.
I know exactly what you mean. It has taken me many years to find an endocrinologist that will even look further than levothyroxine. I'm trying T3/T4 combo but its really hard to get the dose right - and so far its made no difference to the tinnitus which is one of the most distressing symptoms. I'm wondering if I could work towards T3 only and ditch the levo that way. Might be worth a try. Dont give up.....
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