Hello 
I have noticed over the last year that my hearing has become a bit embaressing. I am 34 and find when socialising with friends I'm constantly saying pardon, or just smiling because I can't hear and hope that my nods are in the right place.
I have seen online that lupus can effect your hearing but does anyone know if a GP would refer me for a hearing test?
And has anyone else experienced this?
Thanks
Xx
Hi Sunshine,
I have exactly the same issue but I haven’t had it investigated, I have so many other investigations going on, I’ve attributed mine to lupus, I blame everything on lupus😅. I’m 42 and already can’t hear half of what people are saying, even at the cinema I can barely follow a movie and only enjoy the ones with subtitles at home, I’m actually inspired by your post that I better get it checked out, I don’t see why the GP won’t make a referral, mine are usually good with referrals considering they know about lupus. Good luck.
I'm sorry to hear 😂 this!
I noticed similar with my hearing recently but I'm 72 so mine is probably age related. However, having been diagnosed with lupus over 35 years ago who knows?!
I did things a bit back to front by having an appointment at Specsavers (£55 I think) to remove earwax as I thought that might solve the problem. It didn't so I asked for a free hearing test and it showed the beginnings of hearing loss more in high range than throughout.
As I couldn't afford to BUY hearing aids I then asked my GP for a hearing clinic referral and explained why. Guess where I ended up - Specsavers! In certain areas this company run the hearing service for the NHS. I had a second hearing test and was supplied with hearing aids on that occasion.
Afterthought -
good thing - hearing aids are very easy to disguise 🎉 unless you have very short hair.
not so good - as I can still get by without the aids that's what I'm mostly doing. Hearing Technician did say I should wear them more as it maintains a better hearing connection within the brain!🤔. Good luck 😉
I’ve been referred after seeing the gp although I think that’s for a combination of tinnitus, vertigo and hearing. There is a long delay in appointments though so I’ve not seen ENT yet. I was thinking of booking a test at specsavers.
Thank you all for your replies I shall have a natter with my GP And good luck to you all too xx
I don’t know if deafness is related to lupus, but I was found to be deaf when I was 36 on a work medical. I wasn’t diagnosed with lupus until 20 years later, although I had had odd symptoms for years. My parents were deaf and so is my younger son so I suspect it’s genetic.
Yes, your GP will refer you, but it’s quite likely you’ll end up at Specsavers anyway. It is a horrible invisible disability. You can get hearing aids that Bluetooth to the TV and link to your phone. If you have problems in shops etc, you can get a rainbow lanyard to indicate that you have a problem. I find the most difficult place to hear is in a crowded restaurant. Good luck
Im 60 and have FM and lupus. I have had difficulty for a while in hearing. Been through ENT because of sinus problems. I went to boots hearing and they checked me and no problems and then did their more advanced test where they do background noise and put hearing aids in. no difference with hearing aids so dont need. Ent did testing and said i have lovely clean ears and the hearing of a 19 year old! nice to know. I also have tinnitus.
Long and short, not a hearing problem so must be cognative?
19year old ears aye that's good going!! Thank you for sharing, I hope they say the same to me I have signed up to a beginners course for BSL just in case 🙈
I have terrible tinnitus, all day and night and it drives me mad at times x
I don't hear the wooshing unless it's quiet, sorry you have it all the time must be so frustrating!
So my GP has very kindly referred me for a hearing test I don't know why I always get the fear when approaching medical professionals maybe because I feel like they probably think not her again 😂🙈 "always something wrong with you" is what I hear a lot, or not depending on if I'm in a crowd or there's background noise haha 😂
So just a little update
I was seen by the rudest GP I've ever met who actually made me cry 🙈 but I was referred to audiology, on assessment I have been offered hearing aids, they will be fitted 6th March!
Apparently my failing is bilateral and around f's s's and th sounds now to embrace the hearing aids
Sorry about your encounter with super rude GP. Glad you got referred on at least and now have hearing aids. Did they say what was causing this for you?
Deafness runs in my family and my husband’s too. I have bilateral hearing loss related to ageing and 24/7 tinnitus. The latter is blamed on Sjogren’s polyneuropathy and dryness and maybe also to my diffuse Systemic Sclerosis, which can and does affect any part including ears. I also have a structural abnormality on my jugular vein which causes loud pulsatile tinnitus sometimes. I was given tinnitus aids which I rarely bother with as they make my dry ears itch! However my son, age almost 30, has bilateral hearing loss and tinnitus too. He has no autoimmune diagnosis and blames having been a drummer, pianist and bass guitarist in bands and orchestras when younger. His ongoing skin anand hypersweat issues led to him prescribed Roacutane medication and this was when it all suddenly started but was later blamed by an ENT on ear wax, which he had removed but made no difference. He’s given up on his skin rashes (Rosacea) and just listens to white noise for his tinnitus and hyperacusis. He suffers from some health anxiety so it’s only me who privately wonders about a possible autoimmune cause, hence reading this post. There was an interesting feature on all of this yesterday on radio 4 - about younger people and impact of noise cancelling headphones on their brain/ sound responses.
The audiologist said that structurally my ears looked OK no sign of any inflammation in my ears, I was mid flare up when I attended so guess safe to say they are clear of that
I didn't push for cause but I'll ask when I go for my fitting to be sure and let you know
Thanks ☺️
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