Graves Eye Disease and Hyperthyroid

Treating Grave's Eye Disease Inflammation/Swelling with Rituximab

2009-11-19T23:03:33-05:00

Many patients with Grave's Eye Disease will experience eye problems that are so severe that serious intervention is required, either in the form of steroids, radiation, and/or surgery. Tonight I wanted to share with you some very exciting news from the University of Michigan Kellogg Eye Center. In a recent news release, the Kellogg Eye Center reports that a small group of patients experienced promising results, including improved vision, after being treated with Rituximab, a drug often used for other autoimmune diseases.

Dr. Raymond S. Douglas, M.D., PhD., treated the patients while at UCLA. According to Dr. Douglas, "treatment with rituximab calmed inflammation, stopped progression of the disease, and saved the patients from having to undergo surgery." You can check out the entire Kellogg Eye Center news release by clicking here.

He is working in collaboration with Dr. Terry J. Smith, M.D., also new to the Kellogg Eye Center, to better understand why it is the immune system attacks the orbital area in the first place. I can't tell you how excited I am to see what the future holds based on their work. If, like me, you've experienced even mild eye complications from Grave's Disease you know first hand how devastating the effects can be.

It's been awhile now but I remember quite well having to tape my right eyelid shut at night just to keep it closed. And wearing an eye mask to protect my eyes during sleep. I used eye drops almost constantly throughout the day to keep my eyes moist, and a heavier gel at night. Then there was the eye twitching, not to mention the gritty eye feeling as if someone had thrown a fist full of sand in my eyes, and of course the dull eye pain behind the eyes in the eye socket. Over a period of about 18 months. And those are just the physical symptoms. No one prepares you for the emotional pain you have to deal with.

Despite all of those symptoms, mine were not in the "severe" category and I didn't require steroids, radiation or surgery. Others are less fortunate. For those who do fall in the severe category, Rituximab may wind up being a suitable treatment option for many on a broad medical scale. I'll keep you posted as I track the teams' progress.

One final note. The eye specialist who has been treating me all along, Dr. Victor Elner, M.D., PhD., also works at the Kellogg Eye Center. I'm extremely fortunate to have such great care so close to where I live. You can learn more about the Kellogg Eye Center here.

How Autoimmune Diseases Are Connected

2009-11-16T11:56:47-05:00

Here's a quick :30 video from the American Autoimmune Related Diseases Association, (AARDA), that I thought you'd find interesting. What do lupus, vitiligo, celiac, rheumatoid arthritis, MS, Grave's Disease, type 1 diabetes and Crohn's disease all have in common? They're all part of a category of illnesses know as autoimmune diseases.

Over 50 million people in the United States alone suffer from an autoimmune disease. And many may not even know it. Shockingly, autoimmune diseases as a whole make the "top 10 killer list" of women under the age of 65.

Learn how you can help by visiting AARDA.org

Would You Be Willing to Participate in a Brief Survey About This Blog?

2009-07-24T13:08:34-04:00

I would like to survey readers of this blog but before I do I'd like to know if readers would participate. The survey would center on topics related to how you found the site, information that was helpful to you, information you'd like discussed in the future, and more.

Please comment yes or no below. Thank you!! -------------------------- Sent from my BlackBerry Wireless Handheld!!

Mary Shomon's New York Open Thyroid Event

2009-06-21T20:30:26-04:00

I am relaxing in my hotel in New York City this evening having attended Mary Shomon's all-day speaking event at the New York Open Center. It was a real pleasure to meet Mary in person; as many of you know I have learned so much from her and think very highly of her as a knowledgable patient advocate. Even more so today. Not only did she bring to life the things I have read about in her books, but she also brought a new perspective to them. I will be writing more tomorrow night when I get home. But for now let me leave you with this thought--if you ever have the chance to see Mary speak in person you should jump at the chance to do so. I will explain more tomorrow!!!

Besides yourself, how many others do you know with Grave's Disease?

2009-06-17T22:39:30-04:00

For some reason, I am learning of more and more people who have Grave's Disease.

Most recently, I saw a former colleague of mine over the weekend who mentioned she had Grave's Disease. Today, I learned one of my dad's friends' wife has Grave's Disease and has had it for years. And a couple of weeks ago another business colleague of mine told me his mother has Grave's Disease.

Coincidental? The more I think about it, maybe not. It got me thinking, "I wonder how many visitors to my blog actually know of others who also have Grave's Disease?"

Know someone else? Drop a comment below and let me know.

Guest Author Kathleen Baker Discusses Soy and the Thyroid

2009-06-11T22:34:27-04:00

Soy and the Thyroid: A Look at the Controversy

Over the past decade there has been a growing dispute over whether or not soy can have an adverse affect on or cause thyroid problems. One group claims that soy is a healthy food that should be part of a balanced diet while the other claims that its potential side effects far outweigh the benefits. So who’s actually right? Is there any way to really know? After all, for those who are vegetarian or vegan, not being able to eat soy could be a pretty big deal.

Soy is a food that has been booming in recent years, appearing in every kind of health food and supplement imaginable. Proponents believe that it can improve health during menopause, prevent cancer and heart disease and assist in weight loss just to name a few. Of course, soy doesn’t just show up in health foods but in virtually every other processed food we eat today from bread to ice cream, making it incredibly difficult to avoid. For soy supporters, however, this isn’t a problem as they tout the food as harmless and even beneficial, believing that it’s a much healthier alternative to red meat.

But is soy really the health wonder food it’s advertised to be? Studies by the American Heart Association and the American Medical Association suggest that the benefits of soy may not be all they’re cracked up to be. No direct link was found between soy and the prevention of illness, lowering of cholesterol, or reduction in bone marrow density. Of course, just because soy isn’t a panacea for better health doesn’t mean it’s harmful, and many doctors believe that it’s fine when consumed in moderation.

It wouldn’t be fair to ignore those who believe otherwise, however. Some medical professionals, going back almost 60 years, think that soy promotes the formation of goiters, slowing thyroid function and ultimately causing thyroid disease. Studies have been conflicting as to the veracity of this, some showing a connection between soy and thyroid disease and others attributing it to a myriad of factors including iodine deficiency and the presence of other goiter-inducing substances in the body.

The bottom line is that there's still no definitive resolution to this controversy and likely won't be for some time. For your personal health, you may want to talk to your doctor. Some may suggest erring on the side of caution while others will promote moderation, there is no one right answer and at the end of the day it's up to you to decide whether or not you want to make soy a part of your diet.

This post was contributed by Kathleen Baker, who writes about online health care administration degrees. You can learn about an array of health tips from her blog's web site Healthy Tips from Masters of Health Care.

She welcomes your feedback at KathleenBaker3212 at gmail.com

25 Surprising Ways You're Hurting Your Heart

2009-06-02T21:15:26-04:00

Patients with Grave's Disease know that one of the most common symptoms is a rapid heartbeat and / or an irregular heartbeat, caused by your thyroid kicking into high gear as a result of being hyperthyroid. At one time soon after being diagnosed, my resting heart rate was over 100 beats per minute which is highly abnormal. Fortunately, my heart rate began to drop as I began taking my anti-thyroid medicine and the abnormal heart beats were helped by a beta-blocker.

I've written in past blog posts about the importance of taking care of yourself. Of course it's all the more important if you have a medical illness, such as Grave's Disease. Since heart issues can arise from Grave's Disease, I thought I'd share an article with you that I discovered this evening that speaks to being heart-healthy. Written by Kathleen Baker, it's called 25 Surprising Ways You're Hurting Your Heart. You'll recognize some of the reasons, no doubt. But others may surprise you. Like taking care of your teeth. Please take a moment to check it out. It's a quick and worthy read.

"Maintaining a Strong Immune System" by Pamela Stuppy

2009-05-19T00:53:10-04:00

This evening I went in search of information that outlines what you can do to maintain a strong immune system. I found a story called "Maintaining a Strong Immune System"written just three months ago by Pamela Stuppy that I thought you'd enjoy reading. Here's the short list of 10 excellent recommendations:

1) Get adequate, high-quality sleep

2) Move your body by staying active

3) Eat nutrient-rich, less processed foods

4) Establish a regular eating pattern throughout the day, and don't skip breakfast

5) Lose weight if you're overweight

6) Drink plenty of fluids to maintain proper hydration

7) Maintain a diet that includes regular intake of "active" cultures

8) Make sure you get enough Vitamin D

9) Reduce stress which can drain your immune system

10) Build relaxation time into each day

Pamela concludes her article with a simple statement: "Reducing your risk of illness really just means taking better care of yourself." It's so true.

I thought her list of 10 suggestions for staying healthy made great sense so I thought I'd pass the information along to all of you. Pamela is a registered, licensed dietician in nutrition counseling. If you have specific questions, you may reach Pamela at features@seacoastonline.com

Evening Thoughts: The Mystery Of It All

2009-05-12T22:53:35-04:00

Tonight I drove about a mile from my house to a huge open country field and pulled off the shoulder of the road. It was so close to being completely dark that the night sky had that familiar bluish purple cast that dissipates as it fades to complete darkness. I went there for a specific purpose. At 9:12PM sharp, a bright white light came up from the southwest heading toward the northeast. As I watched the space shuttle Atlantis fly overhead high in the sky, I couldn't help but wonder in amazement. I watched for several minutes until the light grew dim and then completely dark and no longer visible. Amazing.

Standing outside of my car looking skyward, I couldn't help but wonder just how much manpower went into launching the space program. It made me realize, too, how much more work there is to be done when it comes to researching and finding cures for all kinds of medical issues. And that's where your help is needed.

A few days ago I wrote a blog post asking for your support of Bill HR 2084 (for autoimmune research) by writing to your members of Congress (at least for those of you living in the US). I hope you'll take the time to act. The research is important. And a bill of this magnitude, with $43 million in autoimmune research at stake, has never been introduced before. Your voice will make a difference. Remember, the life you save just might be your own.

Shingles and Autoimmune Disease: Could They Be Related?

2009-05-12T22:39:57-04:00

Just over three weeks ago I was diagnosed with shingles. I wouldn't wish this experience on anyone it was so bad. In my case, these huge red welts spread from the center of my back all the way across the right side of my body around to the front under my right arm. The pain was intolerable and since I didn't know what it was I drove myself to the ER. The doctor took one look at my back, asked a few questions and stated in less than 30 seconds: "You have shingles."

Now that the outbreak is finally clearing I got to wondering. Since Grave's Disease is an autoimmune disease thought to be triggered in part from stress, and shingles is thought to be triggered from stress or other immune deficiency (which I now have due to my Grave's Disease), is it possible that they may be related somehow?

To find out I posed the question to well-known author and medical writer Elaine Moore on her site: She replied just five hours later. Here's her reply:

Quote from Elaine Moore: Shingles are more likely to occur in people with autoimmune diseases and allergies than other people. It may be due to therapy that slows down the immune system but some researchers think it's because of our increased reaction (hypervigilance) to foreign organisms.

Studies also show that being around children recently vaccinated for chicken pox can trigger reactivation of latent virus and cause shingles.

The herb lemon balm, which reduces symptoms in Graves' disease, is also reported to be an effective treatment in shingles. See:

http://www.elaine-moore.com/MyArticles/GravesDisease/LemonBalm/tabid/180/Default.aspx

Best, Elaine

So there you have it. It is quite possible. So why do I bring this up here? There's no question we're all feeling stress these days. How can you not? And it affects us in different ways. But how you handle stress is so important, especially if your immune system is compromised. Like mine. And like many of yours. You're at much greater risk for illness to begin with. I know that's easier said than done, and even I need to remind myself of that, every single day. I hope you will too.

"Eyesee" Blog Turns Two Today!

2009-05-10T09:05:06-04:00

I wanted to take a moment this morning to thank everyone who has visited my blog over the past two years. Today, eyesee.typepad.com turns two years old! While I'm glad that I've been able to help many of you in your journey to overall health and well being, I'm most grateful to all of you who have taken the time to talk about your stories so that others may benefit from your personal experiences as well.

Many of you have offered hope and encouragement. Others have talked about the difficulty of finding a good medical team. Still others have talked about how you managed to work through the side effects of both having Grave's Disease as well as being treated for it. No matter the topic, your shared experiences have meant a lot to readers who've dropped by. How do I know? I, for one, am one of them. And so many people post comments and e mail me each week telling me how valuable all of your personal stories are to them. For that, I'm extremely grateful. Thanks for stopping by.

Your Help Is Needed To Obtain Funding For Autoimmune Research: Write To Your Representatives In Support of H.R. 2084

2009-05-03T20:59:17-04:00

Hi everyone! Your urgent help is needed. On April 23, 2009, U.S. Representative Patrick Kennedy re-introduced Bill H.R. 2084, the "Prevention, Awareness, and Research of Autoimmune Diseases Act of 2009" (PARAiD). With this bill's passing, over $43Million of funding would be made available for autoimmune research, education and awareness.

As many as 23.5 million Americans suffer from an autoimmune disease, such as lupus, multiple sclerosis, rheumatoid arthritis, Sjogren's syndrome, celiac, and Grave's Disease to name a few. The passing of bill H.R. 2084 would be a major step forward in researching and better understanding autoimmune diseases.

FOR READERS WHO LIVE IN THE U.S., YOUR HELP IS NEEDED! WHAT YOU CAN DO NOW

Email your congressman/woman asking them to support this important bill (H.R. 2084). Explain why it's important to you, and explain your personal story if you or someone you know is affected by an autoimmune disease. Better still, ask him/her to become a cosponsor of this bill. Be sure to keep it short, and to the point. (Find your house representative here)

Then email your senators and do the same thing: ask for their support, tell them why it's important to you, and explain your personal situation. (Find your state senators here)

SO HOW DOES A BILL GET PASSED IN THE U.S. GOVERNMENT?

First, it has to be introduced. Second, it gets referred to committee(s) that deliberate, investigate and revise the bill. H.R. 2084 is at this stage in the process. The majority of bills never make it past this phase. If a bill does move through committee, then it is voted on in the House, then the Senate, then signed by the President.

There are over 100 autoimmune diseases. And there is no cure for them. Some can be life-threatening. That's why broad-based autoimmune disease research and education is so necessary. Please show your support for this very important legislation.

Also, you can Read Full Text of H.R. 2084 here.

Mary Shomon's New York City Thyroid Workshop: Sunday, June 21, 2009

2009-04-30T21:31:38-04:00

I'm excited to tell you about a workshop that will be held by well-known book author Mary Shomon called "Living With Thyroid Disease: Creating Your Wellness Plan." If you've been following my blog you know that Mary has written numerous books that provide excellent resources to those researching thyroid-related disorders. Matter of fact, you can find several of them right here in the right hand column of my blog's home page.

I've learned so much from her based on her experience and I know many of you have too. That's why I was excited to see that she will be holding a full day workshop in New York City focused on optimal wellness, finding doctors, managing fatigue, lifestyle changes, managing stress, and much more. It will be held at the New York Open Center and the cost is $130 for non members.

I just reserved my spot, and you can too. Find out more about Mary Shomon's New York City Thyroid Workshop: Sunday, June 21, 2009 here.I hope to see you there!

Autoimmune Disease: Coincidence Amongst Friends

2009-04-19T17:57:25-04:00

If you've been following my blog for some time now then you know I've written in the past about my one-time reluctance to tell others about my Grave's Disease. Especially when I was first diagnosed. The name alone was scary enough. Grave's Disease? One of over 100 autoimmune diseases (the family of diseases Type 1 Diabetes, Celiac, Crohns Disease, Lupus, Rheumatoid Arthritis and many others belong to, although each is vastly different).

Reluctant no more, I don't go out of my way to bring it up but if during a conversation it seems appropriate to do so, well then I do. And that's exactly what I did Friday while having lunch with Randall, a long-time friend of mine.

In addition to catching up on family, careers, politics and more, we discovered we share a mutual hobby: blogging! Randall blogs about photography, and I of course blog right here about Grave's Disease. He asked me what I blogged about. "Well it's medical" I responded, pressing on to tell him I have Grave's Disease, an autoimmune disease that affects the thyroid and causes hyperthyroid. "I've heard of it!" he tells me enthusiastically. Well wouldn't you know, it turns out his wife Machelle, whom I've known as long as Randall, has Hashimoto's Disease, an autoimmune disease that also affects the thyroid gland but causes hypothyroidism instead.

Grave's Disease affects less than 1% of the population. Hashimoto's is diagnosed between .3 and 1.5 times per 1000 per year. With those kind of statistics, what is the liklihood that two long-time friends would discover we were both touched by these autoimmune diseases? Quite low indeed.

Despite the odds, you never know just who you will come in contact with that is also affected by an atutoimmne disease. There are, after all, over 100 and counting. I know one thing is for sure. Getting over my own fear of discussing autoimmunity amongst family members and friends was the best thing that could have happened to me. It wasn't long after doing so that I asked myself, "why didn't I do that sooner!!?" Looking back, I wish now that I had. And I wish the same for you! There is absolutely nothing to hide from. Ever.

For those readers wondering if there are any similiarities between Grave's Disease and Hashimoto's, the answer is yes. The answer to the question can you be both hypothyroid and hyperthyroid (by mary shomon) may surprise you. I encourage you to check out Mary's explanation. She provides even more insight between similar symptoms that often get mis-diagnosed as hyperthyroid when in fact it may be just the opposite. She also includes numerous references to Hashimoto's Disease in her very popular must-have thyroid book which you can get right here:

Victorian Tea Autoimmune Fundraiser

2009-04-06T22:45:57-04:00

Planning on being near the metropolitan Detroit area on May the 9th? You can support autoimmune research, patient services and general awareness by attending the American Autoimmune Related Diseases Association (AARDA) 9th Annual Victorian Tea Fundraiser.

Call the AARDA office at 586 776 3900 for more information. I'll be there and I hope you can make it too!