APS & Hearing Loss?

[Tofino5]

Hi all, just wondering if anyone else (or how common it is?) has experienced hearing loss as a result of their APS? I’m also wondering how far this may go. Thanks! Anita in CO

[Raw57]

I have significant hearing loss.I have worn hearing aids for 25 years.

Mine started when I was 25 in 1982. I had bouts of sudden hearing loss. My ENT would put me on prednisone and Lovenox 2x daily for 1 month. He said he knew what I had but there was no test for it.

Moving forward this would happen a few times a year then it included vertigo so in my late 30s we moved and I saw a new ENT. He said it was Meinere’s. He prescribed a low dose blood pressure medication. It helped greatly with vertigo spells.

I had livedo reticularis frequently, my arms and lower legs would suddenly be covered in tiny red dots and then I developed DVTs in my upper arms in 2012.

I gave blood frequently because I had a friend who had sickle cell anemia who needed credits. Sometimes my blood was so thick it was impossible to fill a small tube let alone a pint.

With all of these symptoms still no one mentioned APS until 2014 when a hematologist tested me for APS. I was positive with what I know now with medium high amounts of 3 of 4 test but the hematologist told me my levels were too low for treatment.

In 2018 I saw a new hematologist who restested and found all test except LA to be high positive He put me in Xarelto I still experienced the sudden hearing loss episodes so in 2021 I started warfarin I recently had a hearing test I improved slightly from my last test which was done during a sudden lass episode I’ll never hear normally but the warfarin seems to have helped me not lose more hearing ability after my last sudden lost episode

Is it Meinere’s or is it APS? No one knows I’m not sure it matters The new ENT thinks it’s both since I do not have vertigo while taking the BP medication and have improved hearing on the warfarin

I hope for you to receive good medical care that results in minimal hearing loss There are studies about APS and hearing loss I think you can do a google search to find them

[lenore77]

I have APS diagnosed 20 or so years ago after dvt. Been on warfarin since. I have very annoying tinnitus and hearing loss but no idea if it's related to APS! Hope you get helped with your hearing.

[Lure2]

I had microembolies in my innerear constatated by a Specialist professor of a hearing/balance-clinic. I had TIAs when it started and severe dizziness and Amaurosis fugax as well. I have now 20 years later hearingaids and Tinnitus.

Yes it is caused by small clots f rom APS. After Anticoagulation I still have bad hearing and Tinnitus but the dizziness and balanceproblems are gone. Warfarin has been my help. We have too thick blood and our blood has to be thinned enough to help us get rid of our symptoms. For some of us we need a rather high INR. I live in Sweden and I only talk of APS not together with other autoimmun illnesses that may change the outcome or treament. There are several sorts of APS as there are several sorts of antibodies and titres. Often other autoimmun illnesses like Lupus/SLE, Sjögrens, RA and Thyroidea go hand in hand with our illness APS. Therefor it is so important that we get a Specialist who works with people like us to give us the correct anticoagulation and drugs and also the correct diagnose if there are other autoimmun illnesses involved.

[Tofino5]

Thank you for your experiences and insight! It is helpful!

[MaryF Administrator]

Hi, obviously there could be a number of reasons for hearing loss, including Thyroid dysfunction and B12 deficiency. I have included three papers below, and it is not unusual for Hughes Syndrome/APS patients to have a hidden Thyroid problem and some of us also problems with B12, I am one of those!

ncbi.nlm.nih.gov/pmc/articl....

ncbi.nlm.nih.gov/pmc/articl....

academic.oup.com/rheumatolo...

MaryF

[Tofino5]

I am ‘one of those’ too but those issues are under control for me, but I will read the articles with interest. Thanks MaryF.

My specialist told me the hearing loss was likely from the APS, so I wondered about the experiences of others on the forum. I was quite surprised to hear that.

[TwoH]

I have sudden hearing loss 4 years ago due to blood clot in my ear. It coincided with other symptoms with APS and helped in my diagnosis. My hearing aid has been such a blessing!

[Tofino5]

I am glad to hear you’re doing well!