[elizross]

in reply to: So what was your Graves story…. #1179295

I’ve been out of touch for a while with personal issues but sad to see that this chat seemed to have abruptly stopped. I learn so much from reading other people’s stories and find it so supportive to know that I’m not alone and there are people who understand.

When most people hear that I have Graves Disease they admit they’ve never heard of it or say they know someone else who had it but don’t know anything about it.

I am still intrigued by the debate as to whether or not Graves stops after treatment. My daughter is a doctor and insists that since my RIA, my Graves was cured and I am just hypo now. Since my “cure” I have developed pretibial and ocular myxedema and now lymphedema. My levels seem “in range” but why do I have episodes that take me back to some of my initial symptoms?

My Gyn first caught my T4 abnormality but I was originally “diagnosed” by a family medicine physician who said he couldn’t get me an appointment with an endo but was following her advice in my treatment until he could get me an appointment. He arranged for my RAI but I was too naive and trusting to do my own homework. When I finally did she the Endo, she said she never recommended the RAI and would have tried other treatments first. I fired my family doctor and decided to surround myself with physicians who had a history of working together. My Endo referred me to her own personal physician and they spent quite a bit of time together reviewing my medical history before agreeing on a prudent course of action. My Endo actually told me that I was one of her heroes and the second worst case she had in a long career. God bless that woman.

I mention this mostly to those who may be starting their treatment. Physicans’ ability to practice real medicine has been hampered by Washington and the insurance industry. That’s why we have to be our own strongest advocate and fight for proper care. Insist on having your questions answered. Do your research. Don’t be afraid to ask why and insist that your doctor treat YOU not your DISEASE. We’re all different. Don’t just look at the labs, doc – ask us how we FEEL. I know what my normal blood pressure history is. 120/80 is great for most people but way high for me. Is 5 minutes a visit enough to care for a patient? I don’t think so. As I said, my daughter is a physician and I understand both sides. But I won’t ever stop insisting that I’m more than a label on a chart.

God bless you all and thank you for your openness and honesty. I would love to know if anyone is going to the October seminar in Baltimore. It’s nice to put a face with a name.

[elizross]

in reply to: So what was your Graves story…. #1179289

First, thank you all for your honesty, humor and positive attitude. I feel that I have a hundred friends whom I will never meet.

I’m somewhat of a newbie (RAI in 2008) but seem to have had it all. Short-term memory loss is my biggest frustration at this point because I’ve gotten used to the myxedema affecting my eyes and legs. I’ve been told that neither will ever go away because the pretibial myxedema has caused lymphedema in my legs and I have to go on a pump every night. My kids don’t really understand what I have been through, and I have 5 male business partners who think I’m just getting old. I worry because I need to stay very mentally sharp in my field and I’m not. I’ve never heard of anyone being able to go on disability for Graves (although I heard it once qualified).

Every so often I find one to add to the list. Does anyone else have tinnitus? I have had a constant ringing in my ears, like a field of crickets, since I flipped from hyper to hypo. Everything I eat goes straight through me. The problem with memory and focus bother me the most.

You are all in my prayers and thoughts. And I thank you for your support.

[elizross]

in reply to: Eye Symptoms #1172677

You most likely have Ocular Myxedema. I have suffered from that and pretibial myxedema for two years as a result of Graves. You need to see an Opthamologist who is familiar with Graves. in the meantime, use eye drops and gel. Your eyes are watering from dry eye causing over production of tears to compensate. It’s manageable but you may need annual eye checkups to measure the pressure inside your eyes that can cause bulging.

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