Anyone take Tepezza?

There is an alternative to your drug.go find a good ear nose and throat surgeon that does alot of trauma facial and sinus surgery..orbital fat can be reduced through surgery and it is not without risk but in the hands of a skilled surgeon with image guidance intra operative is an alternative.good luck on your search.

Thyrotoxicosis is a disease of overactive thyroid hormone secretion which can have a side effect of exophthalmos (bulging eyes) which the drug company making that medicine for it has made up the name TED the better to sell it on TV. None of this has anything to do with cirrhosis, which is a liver disease of real seriousness. This forum is no place to get information on hearing loss from a drug treatment like you’re talking about. For that you need to consult an endocrinologist or an ENT physician who can give you an estimate on the risk factors involved here. There will be studies with percentages for that specific problen (and for cure rates). It may be the likelihood of what you’re concerned about is quite low ( or the opposite).  Chances are good an ophthalmologist would know this as well. I’ve never heard of this surgical approach but removing fat around your eyes sounds tricky to me and likely temporary. Get some good advice and best luck with your health and your audiophilia. 

I’m a recently retired Primary Care Physician.  I don’t have experience with the drug.  I can say that if it really caused a significant-like one in 5000 chance- of causing permanent hearing loss it wouldn’t have been released.

  You have to realize that anything that happens to any patient while they are in a trial, has to be reported.  I suspect one or two people taking it in the trials went deaf because they were going to go deaf anyway.  If it really caused deafness the company would be afraid of some mega legal judgment against them.

Hi folks -

What wasn't said, but possibly implied, with my original comments is that potential medical solutions present you with having to make a choice.  And once you get beyond coming up with all the pluses and minuses, you still have a choice to make.  

Pretty simple actually.

The pluses and minuses might be real barnburners in their implications, but at the end of the day, you still get to choose.

By comparison ... my stuff is ultimately fatal, its behavior is well known, its timeline trajectory is well documented, I will predecease my wife and brothers, and my participation in trials with experimental drugs is to quite frankly help out the next generation of sufferers, as my survival is already spoken for.  Boy, that sounded dark.  Time for Metallica's S&M!

On one hand, I would probably give up my left tit to be considering your choices.  

And I get it, what you are facing ain't exactly biscuits and gravy.  

See how it goes.  I appreciate your sharing what's going on with you, because there are not many outlets available to do that anonymously.  I don't think you are seeking advice from a group that couldn't agree on a power cord if you paid it to.  

Sometimes, you just have to vent to the wind.

Good luck.  

Rich 

I applaud your seeking opinions with your hobby colleagues. But isn’t this a conversation — rather than an email string — also to be conducted with your healthcare team of ophthalmology, endocrinology, and primary care? If their guidance is too vague or still unsettling, ask for a referral to an academic health center starting with opthalmology. All the best.