[impish]

#1019892

I joined the foundation several years ago and received great literature which helped me through the 3 eye surgeries that I had. (orbital decompression, muscle surgery, reconstructive eyelid surgery)

I was diagnosed in 2001, had the ablation, I have a great endocrinologist and an excellent occular plastic surgeon at Emory who specializes in Graves.

I live in Atlanta, and am grateful for the excellent doctors. However, I find it very frustrating that there doesn’t seem to be a support group in Atlanta.

Two years ago I went to an ENT regarding loss of hearing. He mentioned Graves, sent me to an audiologist and told me to come back in 2 years.

Recently I went to an audiologist to have my hearing checked again. She explained that the RAI probably damaged a nerve in my ear and that hearing aides would not help. She told me to get an amplified phone and a special headset, which she is helping me research.

I moved to San Francisco for about months, and had the most stressful experience in my life. I had 2 retinal tears in my left eye, the pressure in my left eye shot way up and I have been on Cosopt for about months. The left eye is the one that that was operated on 3 times for graves. I also underwent a mastectomy in the same 6 month period. I am sure that all of this stress re-activated my graves.

My Graves disease had been stable, and after moving back to Atlanta, my home, my endo told me I was now hypo, and my occular plastic surgeon says that my eye disease is active again.

My endo raised my synthroid, and now I am sure I am hyperthyroid again, my heart is racing. One minute I feel hyper, the next hypo. I am having my thyroid levels checked again Jan 14th. I have been doing yoga to relax and destress. Some days I can’t stay awake to go to yoga class. I have always been fairly slender, but the weight is falling off again, and I am not trying to lose weight.

I want to rejoin, the foundation, the phone numbers are incorrect, I can’t figure out how to apply and obtain new literature.

I am grateful to be home, to have a wonderful job, to have health insurance and good friends.

To those who have been through this disease for years, I ask the following questions:

1. Do you believe that we can control some of this disease process through relaxation?

2. Has anyone heard of graves RAI affecting your hearing?

3. Are the numbers and thyroid levels totally separate from the eye disease? Some of my doctors say yes, some say no.

4. How do I join the foundation?

5. How do I purchase the literature?

6. Is there a support group in Atlanta or other members who would like to come together for a support group?

I am sure that I am hyper again, because I just went over the top in venting.
Needing some support and some answers.
Thanks,
Rena

[cathycnm]

#1074850

Impish – Wow it sounds like you have been through a lot.

I joined the Foundation through a link on this site and downloaded a form to send in – that had a place to order literature on the same form. One of the official facilitators may have better info.

I have not heard of hearing loss before – I deal with eustation tube dysfunction and hearing loss that comes and goes with that (not Graves related) and I can only imagine that is frustrating.

I think anything we do to relax is helpful. It stimulates the parasympathetic nervious system (that slows us down) which helps to balance the sympathetic system (that speeds us up and increases heart rate, etc). I am a huge believer in holistic strategies (not just medication) to healing most illnesses. I am impressed with the yoga. Good for you doing what you can to empower yourself to heal. Many current research studies are starting to show a link between outcomes and the use of strategies such as yoga. Is there a guarentee that it will make a difference – no. I read a book not long ago about a psychologist who was diagnosed with prostrate cancer and given less than a year to live. The book was written by him 19 years later!!! Part of his success was doing small things to get healthier – one thing he did was yoga. He worked closely with doctors, read up on treatment options, changed his diet and exercise patterns to name a few things. He never got too helpless to stop trying – your story reminds me of that. Happy New Year!!! ” title=”Very Happy” />

[Bobbi]

#1074851

Hi, Impish:

I have never heard of RAI affecting the nerve in the ear. Nerve damage to the ear can come from other sources, so citing RAI and letting it go at that is too flippant for me. I would want directions to the studies that show it, in peer-reviewed scientific journals. Barring evidence, it is simply an opinion from someone who may or may not have true knowledge.

It used to be thought that the eye disease was a part of the hyperthyroid autoimmune disease. When I was first diagnosed in 1996 the eye disease was named "Graves" Eye Disease (GED). Somewhere in the middle of my treatment however, the name of the eye disease changed to Thyroid Eye Disease (TED). I asked my oculoplastic surgeon why this was, and he told me that doctors were turning up more and more cases of the eye disease in people who had never been hyperthyroid or who had other, completely separate, thyroid issues. So they changed the name of the disease. This all has happened, though, in the past twelve years or so. So some doctors may still be skeptical, and think that treating your thyroid levels will help with the eye disease, while others have decided that thyroid levels have no impact on the eye disease. I think the distinction that needs to be made is whether you are talking about a disease process or a temporary amplification of existing disease symptoms due to thyroid hormone levels. Think of the person who has had a major broken bone who gets aches there whenever the weather becomes dank and chilly. The dank chilly weather is not making the break worse: it is, however, making the results of the break more evident. I think it is entirely possible (based on my own anecdotal experiences) that whacky thyroid hormone levels make the results of the eye disease more evident, and getting back to normal levels minimizes the symptoms (because the body and its muscles are functioning more normally). But the thyroid hormone levels themselves are not causing any new "hot" phase of the eye disease necessarily. If this is true, it makes sense why some doctors would believe that treating the thyroid levels affect the eye disease, too. In one sense, anyway. But obviously treating thyroid levels does not prevent the eye disease from occurring in the first place.

I will write to Dr. Patterson about your question on how to join NGDF. Either she, or I, will get back to you.

[elf]

#1074852

I have a familial hearing loss (that runs in my family). I was wondering if that was connected to Graves. Nobody in my family had Graves or other thyroid problems, but thinking back I think my family might have had pre-disposition (carrying Graves antibodies). My grandma had what you’d call Graves behavior – easily irritated, suspicious, rage-prone. She had her hearing going down in her 50s. My dad (not her son), I think, kept Graves at bay by having a sunny cheerful attitude all his life. He started losing hearing at around 45.

My hearing went slightly down in my 30s (just when my eyes started behaving funky, but no clinical Graves yet). I was diagnosed Graves at 41, had RAI at 41, and now at 45 I hear about 60%. When it’s extremely important that I hear, I wear a sound amplifier (much cheaper than hearing aid). My right ear is almost completely gone, and the left one is functioning at about 80%. I have nothing against using hearing aids when time comes.

[Author]

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