28 years old, just been told I have 'cookie bite' hearing loss. No family history :(

#1

Hi everyone, I am very new here and very new to being someone labelled as hard of hearing so please ignore my ignorance on this topic. I have had a good nosey around this board and it seems a lot of you are very informed so thought I would give this a try.

This is the short story: can something else other than congenital factors cause this pattern of hearing loss?


Here is the background if you have a spare 10 minutes to read: 3 years ago I got Glandular Fever, I was quite unwell but not as bad as some people seem to be with it, I took 9 days out of study. Anyway since then I have never been “right” and the main symptoms initially (ie. within 1 year) were fatigue, achy collar bones & ribs, IBS like bowel problems and just feeing like rubbish which my GP out down to Post Viral fatigue.

Since then I have a few other symptoms (some of which may be in my head, when you feel very poorly all of the time it’s easy to start thinking everything is a symptom, you almost start to look for things!), the main things that have been actually identified are that I have developed urticaria which is mainly triggered by heat/cold, sweat and feeling flustered. Last week I also found out that I have “cookie bite” hearing loss.

The specialist told me it was a heridary condition which I would have had since a young age. I’m 28, a straight A student with 2 first class hons degree. I have never had a problem hearing a lecturer or anyone else for that mater until 1.5 years ago when I stopped hearing my door bell. I also have no history of any type of hearing loss in my family. The specialist wrote in my notes that the hearing loss followed the same pattern as a hereditary pattern.

I went back to my GP thinking the hearing loss might be linked to the urticaria and the other general symptoms that I have (I think I have an auto immune problem). But because my notes say it’s hereditary the GP seems pretty fixated on that and wont accept that there is no family history what so ever, even going back 3 generations!:confused:

My question to you guys is; do you know of anything else that would cause this type of hearing loss pattern?

Sorry this is so long I just wanted to give all of the facts to avoid confusion. If it matters my Audiology results were (there is a curve type described as AC and BC if that means anything to anyone?? these scores are for the AC curve type).

Right Ear:…Left Ear:
Freq in HZ: 250 Hearing Level (dB) 45 Freq in HZ: 250 … Hearing Level (dB) 40
Freq in HZ: 500 Hearing Level (dB) 55 Freq in HZ: 500 … Hearing Level (dB) 55
Freq in HZ: 1k Hearing Level (dB) 60 Freq in HZ: 1k … Hearing Level (dB) 60
Freq in HZ: 2k Hearing Level (dB) 55 Freq in HZ: 2k … Hearing Level (dB) 55
Freq in HZ: 4k Hearing Level (dB) 45 Freq in HZ: 4k … Hearing Level (dB) 45
Freq in HZ: 6k Hearing Level (dB) 20 Freq in HZ: 6k … Hearing Level (dB) 15
Freq in HZ: 8k Hearing Level (dB) 10 Freq in HZ: 8k … Hearing Level (dB) 15

Thank you to anyone who can shed some light on this. If it turns out to be that I am hard of hearing because of genetics then so be it; I just want to ensure that there isn’t an underlying cause behind this.:slight_smile:

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#2

Apparently hearing loss after glandular fever(mononucleosis) is not that uncommon. Follow this link. http://pediatrics.aappublications.org/content/75/6/1020.abstract

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#3

The question I have is how did he base his diagnosis as hereditary. The fact that neither of your parents suffer from a hearing loss is not indicative that your loss is not hereditary. Neither of my parents had a hearing loss, and none of my three syblings have hearing losses, as a matter of fact I can’t think of anyone in my family tree that has a loss, but here I am with a profound loss. An indication that the loss is hereditary is the fact that my loss is progressive, gradually getting worse as time goes on. Usually, but not always, a loss from a illness is set, in other words you have the loss but it doesn’t get worse. The fact that you say you used to be able to hear certain things but now can’t would indicate a progressive loss, which could indicate that your problem may be hereditary. You can be tested to see if you have a known gene that causes hearing loss but I would check with my insurance company first to see if you are covered. I would seriously consider having your hearing tested annually again assuming your insurance covers it. An annual test would over a certain period of time tell whether your loss is progressive or stable.

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#4

Thank you both for your replies.

SMC thanks for the link, I had already read that paper, but I am wondering if the pattern of my loss (ie. cookie loss, loss in the mid frequencies) rules out illness being a cause? The paper doesn’t make it clear but from other papers I have read there tends to be a ski slope loss.

Hask12 the specialist said that the pattern of the hearing loss is fairly rare and is congenital. In his notes to my GP he didn’t say it was caused by genetics, but he did say it forms the same pattern as hereditary hearing loss, which my GP seems to have taken to mean it is hereditary. I live in England, so it’s a funny system here, I can’t just ask to have test, the GP (my family doctor) has to refer me :confused:

I am really looking for some evidence to take to me GP so I can get that referral.

Thanks again both.

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#5

Hi was really interested to read your post as I too wonder whether my hearing loss was made worse after bout of glandular fever 2 years on the run which lasted for 2-3 months. I was told had significant hearing loss abou t 8 years ago but vanity prevented me from using aids. I’ve recently been again for a check and I too have cookie hearing pattern but told that I’ve prob had loss from birth but I noticed a huge change after having glandualr fever. The secon time I totally lost my voice and was totally deaf for a few weeks and after the infection went my hearing didn’t go back like it was before. I was a kid of 15 then and didn’t take too much notice and just accepted but with hindsight maybe I should have complained a bit more cos did wonder at times if my hearing was not right. :cat2:

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#6

This was 7 years ago and what with a change of host, none of the users in this old thread appear to be still active.

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#7

Hi there and thanks for your reply. I couldn’t see the year of your post and also I only kinda joined the forum a few months ago cos as said have recently and very reluctantly starting using aids. My audiograph too show typical cookie bite pattern tho my left ear has fared less well than 8 yer go when had first hering test done. For my life I can’t understand how have coped as both ears dip to 70/75db in mid frequency. I do agree that I was more than likely born with hearing impairment as tinnitus has been my friend (halal) for always. However I believe 100% that having 2 severe bouts of glandular fever made it worse as the secon time I lost my voice and was almost completely deaf for a few weeks and when I recovered from the virus my hearing and tinnitus never got back to how it was. I was a kid of 15 and by then had my own coping strategies as felt kinda thick so managed to cover the fact I couldn’t understand half of a conversation n had loads of notes to copy each night from school. Since replying to your original post I’ve looked up viral infections and it does seem they can affect hearing which of many I was aware but not my bouts of GV. The cookie bite patter however is quite rare and from the little research I’ve done it is usually been that way to some degree from birth. I’m at a loss to understand all this as have been in denial really but I’m as interested s yourself to try and make sense as none of my family has had hearing issues. Hope things are going ok and I’m always grateful for some info or Marion about this pain in butt thing now have finally surrendourd to using these monstrosities.

Thanks again reply :cat2::heart_eyes_cat::paw_prints::paw_prints::paw_prints:

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