I have just been diagnosed with this hearing loss by a private ENT consultant which is probably permanent because it is now too late for steroid treatment to work. NHS ENT doctors should have given me steroids immediately. Instead they treated it as a simple ear infection and failed to provide follow up appointments. One of them did say that there was a connection to hypothyroidism and I have since read that patients with congenital hypothyroidism have an increased risk of losing hearing in this way (about 20%)
The private ENT doctor did arrange my thyroid tests. I don't yet have the results but he doesn't think that this is the cause.
I'd really like to hear from anyone who developed this condition (together with having congenital hypothyroidism).
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Katejo1963
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I'd really like to hear from anyone who developed this condition (together with having congenital hypothyroidism).
It is my understanding that congenital hypothyroidism means the patient was born with no thyroid or has an under-developed thyroid.
This type of hypothyroidism is not terribly common, and to ask for only people with this condition plus hearing loss is restricting the pool of people answering to a very small number.
Having said that... I have a thyroid, but have no idea what condition it is in or what size it is. I've never had a goitre. I had my first symptoms of hypothyroidism before I even reached school age, but was just assumed to be a lazy child and was never tested or treated for being hypo. I got my first prescription for Levo in my early/mid 50s.
Aged 5 or 6 I had measles, extremely severely. Afterwards my mother suspected that my hearing was not as good as it had been. This was, at the time, blamed on the measles. I was tested and a hearing loss was detected, and I got tested a few times while I was still at school, showing that things were slowly deteriorating.
But why my hearing has been slowly deteriorating ever since has never been explained. I don't think it has anything to do with the measles at all. I'm now completely deaf in one ear, and the hearing in the other ear is very poor. I give myself perhaps 3 - 5 more years before I'll be completely deaf. Nobody knows why I'm getting deafer, and nobody seems to care. Being in my 60s now the problem is just blamed on me getting older. I hadn't really taken on board until I was in my 50s that the diagnosis and treatment of hearing loss is still extremely primitive.
sorry to hear of your hearing deteriorating Humanbean. Over the last few years since I discovered this forum & the criticality of the thyroid gland to virtually every part of the body I have come across relationship to hearing and hypothyroidism several times.
Knowing you (from your excellent posts on this forum) I’m doubtful you are sub optimally treated but is it possible ?
Hi Humanbean I. only specified congenital to make a distinction between myself (having been diagnosed many years ago and stable in all other respects) and someone newly diagnosed who has various symptoms. My hearing was fine until the end of June when I suddenly lost part of it on the left side only, not the right. Now all babies as tested routinely at birth but that didn't start until years after I was born. My sister and 1 brother have the same condition but not my youngest brother.
The second link definitely applies to me. I'm convinced that it is at least partially responsible for my deafness but treatment options from the NHS have been totally useless from my point of view.
Whenever I mention that my hearing deteriorated in line with becoming more and more hypo it gets poo-pooed. I’ve recently bought myself hearing aids and as fantastic and discreet as they are I feel resentful that it’s come to this
No doubt this feeling will pass but apparently not so the hearing loss 🙁
I can only say that I developed tinnitus and hearing loss in connection with my dose of Synthroid being brutally lowered from 125 mcg to 75 mcg. And even though I was placed on 100 mcg after a couple of years, the tinnitus and hearing loss has not gone away. I have to assume that it is now permanent no matter what dose I'm on. I have read up on it and come to the conclusion that hypothyroidism as well as the inflammatory effects of thyroiditis can cause hearing loss. healthyhearing.com/report/5... and ncbi.nlm.nih.gov/pmc/articl...
The private ENT who saw me doesn't think that there is a thyroid connection but the hospital ENT suggested that there was. I am awaiting my thyroid test results with interest. it is much more comprehensive than the usual tests done via the GP. When you say treatment options via the NHS are useless, are you referring to hearing aids or something else? I have booked a hearing test with Scrivens opticians. I was very surprised to hear that, if I got a hearing test via the local hospital, I would then not be allowed any help from Scrivens.
I think you are referring to what humanbean said. But I can attest to different doctors having different, sometimes opposite, opinions on the same subject. In your case that would be one saying there is a connection and the other saying there is not. Both of them are most likely saying this with the utmost confidence and if you were to pick one of the positions and present it to the other doctor the reaction would most likely not be pleasant. This is why it is so important to collect your own information from reliable sources, come to your own conclusion and base your actions on that (as much as you can).
I’m 63 and have pendreds which is congenital hypothyroidism and bilateral deafness. Bit sudden deafness. Only diagnosed at age 4.5 yrs despite a huge goitre. It is possible that hearing loss develops later in life but usually by adolescence mid 20s. It gets worse because age related decline exacerbates it as may a viral infection.
Your hypothyroidism wasn't detected until you were 4? Mine was diagnosed late at 3 months and my parents were warned of me being a slow learner but fortunately it didn't happen and i did well at school and university.
Yes it was in early 60's and a happy coincidence that I was ever detected in days before neonatal Guthrie test. This test doesn't actually pick up all cases of Pendreds as some develop late childhood/teens. My mum was told she was a hysterical social worker until GP went to a lecture and realised i fitted the case study being described. I still do think that there will be a number of people who became institutionalised with avoidable 'learning disabilities' (hearing /hypothyroidism). I also went on to gain a Masters and proudly wore a badge saying 'I may have been a cretin but I ain't thick ' for a few years.
My Mum told me the story of how i had a check up with a paediatrician when i was about 2 or 3. The doctor asked me to count but i said nothing so Mum tried to prompt me with 1, 2, 3. I promptly recited '1. 2, 3 mothet caught a flea, put it in the teapot and made a cup of tea. The flea jumped out..... etc'. The doctor told Mum that there was nothing wrong with me. When my brother was born. Mum was convinced that he had the same but the medics didn't believe her. When my sister was born, she said the same and they accepted it @
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Big shock regarding my congenital hypothyroidism!
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