Anybody here with ET and hearing impairment?

[clubdino]

I was diagnosed with ET in my 20s but like many people here I often wonder how long I actually had the disease before I was diagnosed. I recently read an article that said ET can cause hearing loss which caught my attention because around the age of 15 I started having problems with my hearing. I often assumed that my hearing loss was due to my many ear infections as a child but now I'm wondering if maybe I actually had ET as a teenager. Anybody else here who also struggles with hearing impairment?

[ALynnJohnston]

I have hearing problems and have a hearing aid.

This ET causes sticky blood and blood rushes through the ears so heavy or sticky blood seems like your onto something here. It’s interesting is what I’m saying. I’d be interested in seeing if others have been affected too. I know we can’t say everything is ET related but surely in my head that makes sense. Thank you for your topic

[clubdino in reply to ALynnJohnston]

Interesting. Do you mind if I ask your age? I know I'm at the point where I probably need a hearing aid but I have been putting it off because it's expensive. It's not covered by insurance in America and can easily cost $3,000. But it is affecting my life so much.

[ALynnJohnston in reply to clubdino]

I turned 45 yesterday.

[clubdino in reply to ALynnJohnston]

Happy Birthday! I turned 42 a couple weks ago. How long have you had ET and how long have you had your hearing problem?

[Cindy12]

I had ear wax removed this week and the audiologist said I needed to go to the GP for a prescription for ear drops as I have an ear infection. I also bought hearing aids three years ago, but at 86 years of age some hearing loss is to be expected! I was diagnosed with ET CALR in 2014 and hadn't connected the ear problems with ET, but it does make you wonder.

Best wishes to you all.

[hunter5582]

I had ET since 30 years ago and it progressed to PV about 6 years ago. Do also have hearing loss. To my female audiiologist's amusement, it is in the tone band of a typical women's voice. I really can say "Honey I did not hear you." Same tone band as a turn signal clicker. The resulting DWO drives my son nuts. Regardless, my hearing loss is likely genetic. Hx of this on Mom's side of the family. Would think if you have had lots of ear infections that would be the more likely culprit. Sometimes things happen that are not related to our MPNs. It is really hard to sort it all out and the related issues are not always clear. Hope you get it all sorted out soon.

[clubdino in reply to hunter5582]

Haha! I also have hearing loss at the same tone of people speaking. I'm not sure if it's men, woman or both. But let me tell ya, my neighbors haven't changed the batteries in their smoke detectors for 2 years and I've been hearing them beep every 20 seconds for 2 years. 😭

[hunter5582]

Yup. It is all about tone band. Hearing loss is often in specific tone groups. The hard part is distinguishing foregraound from background sound. Trying to have a conversation in a loud restauraunt is impossible! I know hearing aids are in ky future.

[Lifam]

I haven't had any ear loss yet, but I've been on HU only 3 months and it's worsen my vision, I have blur vision, although I do have cataract but it got worse badly in the matter of few months, i am sure HU contribute to it, blurr vision is one of the listed side effects. I am also in another support group(ET) where quite a few members already has blur vision from HU.

[clubdino in reply to Lifam]

I also get bouts of blurry vision although I'm not on HU. It was happening quite regularly for awhile but then tapered off.

[Peak-Moves]

Hi clubdino, I’m 45, diagnosed with ET jak2 just in June after a CVST clot. I already (?) had hearing loss and finally diagnosed and started wearing bilateral hearing aids in 2016. It has been put down to infections as a child and some family history of “young” hearing loss - my uncle. I’m new to all the MPN info so interested to hear what other people think too!

[clubdino in reply to Peak-Moves]

Hi. Thanks for telling your story. It sure makes you wonder.

[Lab-Rat]

Interesting. I too was diagnosed with hearing damage in my early 40s, also in the specific range/register where people speak. The audiologist considered it very unusual. I’ve never had ear infections. ENT specialist said a likely cause in my case was exposure to ototoxic solvents due to my profession. I have preMF with high platelets Jak2+. I traced my historical records and my platelets were already above normal at that time...

[clubdino in reply to Lab-Rat]

I'm sensing a pattern now. I mean I know personally how much ET has affected my eyes over the years so it makes sense that it can affect your ears.

[Anag]

Hi Clubdino,

I traced the beginning of my ET to 9 years ago. I had blood tests 2x yearly to keep a check on my thyroid. It was unbelievable that none of my doctors saw the problem. They thought I had an infection even at 758!

So. I don’t have hearing problems, but glaucoma started about 7 years ago. Apparently a “low pressure” glaucoma. After constant questioning (it was like pulling teeth!) I finally got some info: “Your blood is not getting to your capillaries. You’re not drinking enough water, sleep without a pillow.” Well, I did all that anyways. When I went back to the eye doctor and said I had ET (she didn’t know what that was) her eyes opened up. That is most probably, she said. Since therapy my glaucoma is stable. At the same time, a histamine problem was plaguing me. Since my auto immune Paleo diet, as you know from other discussion here, that and other malaise are gone.

This may really be the case with your ears. This should then be the case that when bad blood flow a factor in your hearing problems was/is, things should stay stable under treatment.

Hope to have helped. Anag

[clubdino in reply to Anag]

Yes, I had the same experience at the eye doctor when I went there for vision problems related to ET. I had to spell the words for them. And also my doctor wasn't telling me about my elevated platelet counts for many years. We definitely have to be our own advocates.

[Anag]

I have lost almost all respect and trust in conventional medicine. It seems the only thing they are good for is absolute emergencies. I’m completely emerged in alternative therapies, food and better lifestyle to help turn my life around. I’m sick and tired of being a blind Guinea pig for Pharma and big business and anyone who can advertise. Only well Informed patients and consumers can turn around the horrendous trends that are destroying our lives and families.

I am one of 8 close friends from high school and college and 4 of us (50%!) have had one form or another of cancer by the time we were 46! One of us died last year. We were pretty healthy eaters from healthy parents. This is unfortunately becoming the norm!

I’m so glad that many of us in this forum are active in their care and are questioning and searching for answers! Congratulations for being inquisitive! Anag

[Indigo42916]

I have had change in hearing, haven't had it tested. I noticed it after I started Hydrea, which I only took for a few months.