Hello all, first time poster. I am curious if anyone else has had issues with progressive hearing loss and AA. I have read a lot of posts and some doctors state that the type of cells in the hair follicles and the hair in your inner ear (cilia or stereocilia) are completely different so it is not possible. BUT I have also read from some people on here that they experience ringing in the ears (tinnitus). I am just curious if any of those people have also got a hearing check and if they have been diagnosed with a loss of hearing; mainly on the high frequency.  I have come across a few scientific studies published that have showed a correlation but it seems this theory is not widely accepted in the medical fields.

A little background: I have AAP. Been dealing with my condition for over 30yrs. I had a full head of hair until I was 4yo then I lost it all at once, in a period of a couple months. I had AT for the next 3-4yrs then my hair started to come back but I have always had AAP since. I have been shaving my head since I was 20yo to cope. Now at 35yo seems like it is getting worse...lost one of my eyebrows recently. When I was around 17yo I started to notice ringing in my ears. By 22yo I went to an audiologist and found that I had some significant hearing loss for my age, in the high frequencies. They wanted me to see an ENT, I went to one and they did an MRI and couldn't find anything wrong with the auditory nerve. Over the next 12-13yrs my hearing has gotten worse (based on multiple hearing tests throughout that timeframe.)

Thanks in advance for your input!!

Robert

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I have tinnitus started when i was younger around 18! also aA started around 25 . no wi have unvierslais and no eyebrows or lashes!

I too have had this tinnitus occasionally. How fast was transition from AA to AU since 25 till now if you dont mind me asking?

I have suffered from tinnitus since 1991, onset was quite sudden.

Never thought of a connection with alopecia.


Thanks for the information.

Oh my God, this really brought back memories. My 11 year old girl was also born with a full head of hair and started losing it at 4. She is totally bold - AT. Earlier this year she had a slight cold and told me her ear was blocked. Thinking it was just a cold, i waited a few days and my cousin who works in ENT told me to bring her in for a hearing test right away- only to find out she had gone totally deaf in her right ear. The doctors were baffled and said they had never seen that happen to a child so young. I asked several Doctors - including the ones at Hospital for Sick Kids in Toronto if this was related to her having Alopecia and they said they didnt know and that there was any evidence of this.

Took her for an MRI and at the moment her left ear is still ok. I'm terribly worried that she might loose her hearing in the remaining ear. She now wears a hearing aid.

Robert, please keep me informed if you find out any more information.

Hi--I hope this message gets to you. My 11 year old daughter was born with hearing in both ears and a full head of hair. At 4 she suddenly lost all hearing in her right ear. They still don't know the cause but it's sensorineural hearing loss. We tried a cochlear implant and it was unsuccessful. She uses the CROS hearing aid. Her left ear has been hearing well, until this past fall. It's now showing slight loss (still within normal range for an adult), and they don't know why. This past weekend she woke up with hairloss to her eyebrow and a circle where skin was discolored (size of a coin). They diagnosed her with alopecia. If you see this, please respond. The hearing is scary enough and now for her to have to cope with a new diagnosis is just so frightening--I'm sure you know this well. Thanks a lot. Karen

Hi Robert,

I have alopecia totalis and ringing with hearing loss. While I have often suspected a connection, I have never been able to definitively confirm. I'm 66 and lost all my hair about 20 years ago. 

I have had AU for 43 years, it came on with the birth of my oldest daughter.  The tinnitus has been going on for years but since my dad had it I just thought it ran in the family and never bothered with doctors as I don't trust them after the merry go round I went thru when my alopecia started.  Never thought the two were connected tho I do think my allergies might be as I have many to include the last couple of years now being sensitive to gluten.  One note I have read drinking aspartame can cause ringing in the ears.

I am 73 years old.  I have had tinnitus for 10 years, about 5 years ago I temporarily lost all hearing in right ear, The specialist told me it was an autoimmune condition.  After a round of steroids hearing came back.  I had a full had of hair until 14 months ago when I lost all my hair including all body hair; alopecia universalis. All I can say about this experience is Bald is Beautiful.  

i am 62years old, I have  AU since I was 20 years old about 12 yearsago I went deaf in my right  ear, I saw ENT doctor, who said I had viral infection in my ear he gave me a steroid through my ear drum, and my hearing came back, but ever since I have had , constant , irritating  ringing in that ear and it goes deaf for afew seconds and coms back, anyone else haave similar experience, I also suffer from fibromyalgia and osto arthritis.

Wow! I never would've put this together. I've got AU since age 14; 35 years now. I've also got no hearing in my left ear from always. I just thought the hearing loss was genetic on my mother's side.
I have always had ear problems, ear infections, tinnitus, weird ear drainage.
Wow, I never would have connected ear problems with this dreaded disease.
I've always had allergies and my doctor connected my ear problems with those but never my alopecia. I guess that it makes sense. Our bodies are full of small hairlike brooms(cilia). Those brooms are probably affected by the autoimmune response too. I got a bad ear infection this spring and then my hair then came out in handfuls. Thanks for the 411.

I found this really interesting, as my 10 year old son has AA.  He had glue ear when he was younger - lots of ear infections - and had five separate surgeries to insert grommits, which kept falling out, always within a year.  Haven't had his hearing checked and hadn't even thought there might be a connection.

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