Graves Eye Disease and Hyperthyroid

How soon does eye disease develop in concert with Graves' Disease, on average?

If you read my last post, you know that I attended the patient & family Graves' Disease forum at the Kellogg Eye Center, University of Michigan, last Saturday morning.  So many people ask me here on my blog, or through direct emails, "how long did you have Graves' Disease before you noticed eye problems."  I learned something Saturday that is relevant to that question, and that I'd like to share with you here.

According to Dr. Cesar Briceno, MD, in 70-85% of Graves' patients, the eye disease will develop within 18months.  For me it was early.  

He went on to say that surgical treatment is generally not done (unless necessary) early on, but rather is considered later, when the "active phase" of Graves' Eye Disease has ended.  Meaning your eyes are stable, no longer moving, over a period of time.

I thought that was interesting and informative.  And I thought I would post the information here because I get asked that question so very often.

 

Graves' Disease & Thyroid Foundation Wants Your Input!

Have you ever wanted to tell someone what it was you'd like to learn about Graves' Disease or thyroid issues?  Well, now's your chance.

The Graves' Disease & Thyroid Foundation would like your input in the following areas as they shape their 2012 education offerings:

Format

Timing

Presentation Topics

I took the survey myself, and provided input on topics I'd like to learn more about, locations I'd travel to to attend the seminar, ratio of presentations of doctors vs. patient breakouts, meal choices throughout the day, etc.  

Here's your chance to provide your input as the plans are being put together.

For more information, and to provide input, click here.

 

Why the eye stiffness, after all this time? I asked the question, read the answer here (from the Graves' Disease Forum~Kellogg Eye Center~last weekend)

Hi everyone.

Last Saturday I attended the second patient and family Graves' Disease conference held at the Kellogg Eye Center, University of Michigan.  As some of you may know, this is where my eye specialist is and where I have been a patient for six years now.  It was a wonderful morning full of detailed information about Graves' Disease.  And best of all, I saw familiar faces from the last time I was there (about 90 days ago) when they  held their very first conference for patients and family members on Graves' Disease.

The question came up, why is it the eyes remain stiff even after some/most/all of the eye issues are gone?  Even in my case, my right eye still feels some measure of stiffness, especially in the morning.  Some days are worse than others.  Some days it's not so bad.

The reason?  According to Dr. Cesar Briceno, M.D., the eye muscles get fibrosis and scar tissue that can result in stiffness that we feel, and that stiffness can at times even prevent movement.  

I also learned more about the autoimmune process in Graves' Eye Disease, specific to the eye issues/swelling.  According to Dr. Shivani Gupta, MD, MPH, (she spoke at the event), there can be either muscle involvement (usually in older people), or fat expansion (more prominent in younger people).  I didn't realize the swelling can present itself in two entirely different ways.  

For anyone residing near Ann Arbor, Michigan, I encourage you to attend the next patient / family forum in about three months or so.  Check back for the date, which I'll post here, when it is published.  A lot of people come from out of state as well.  Let me know if you're coming next time and I'll look forward to meeting you there.

 

 

 

Thyroid health awareness

Hear Dr. Yehuda Handelsman talk about thyroid disease in this short, educational segment

http://www.aztv.com/category/217859/video-landing-page?autoStart=true&topVideoCatNo=default&clipId=6673748#.TyFngrtJVog.email

My interview with Dr. Yehuda Handelsman

January is thyroid awareness month and the  American Associan of Clinical Endocrinologists (AACE) is raising awareness of thyroid diseases by promoting a new blue paisley "awareness ribbon" that  you can find at the above link.  You can get your ribbon at the above link.  I've even changed my profile picture on social networking sites to show my support of increasing awareness during Thyroid Awareness Month.  I encourage you to do the same!

As part of this awareness campaign, I was asked by the AACE to participate in a one-on-one interview with Dr. Yehuda Handelsman, endocrinologist and leading expert in the field of Diabetes, Lipid Disorders, Hypertension and Metabolic Disorders.  It was an privelege to be able to ask him specific questions about thyroid disease. 

You can listen to the interview right here.  Topics include TSH testing, early/better diagnostics, thyroid and pregnancy, inherited thyroid disease, predicting thyroid disease through genetics, antibodies (and thyroid function) and more.

 

For more information, please visit thyroidawareness.com

 

A word from Mary Shomon, $25 TSH test direct from MyMedLab.com

Hi everyone.  For those of you who have read about my story, you know how much I have learned from the books written by author and patient advocate Mary Shomon.  In this video, she talks about the importance of the TSH test and your opportunity to receive a direct-to-home test result for $25.  

 

 

Read more from Mary Shomon about the Basic Screening Test during Thyroid Awareness Month (Jan 2012) here.

For many people, it's hard to find affordable care, and while this won't be the only test you'll need for comprehensive care, it's an important and affordable start.  Many patients are misdiagnosed, or not diagnosed at all, and the TSH test can be part of your first step in determining if you have a thyroid condition.  

Please remember to consult your doctor regarding all health matters so that you can receive proper care and treatment.  

Actress Faith Ford Struggles with Graves' Disease

Did you know that actress Faith Ford has struggled with Graves' Disease?  She was diagnosed in 1988 when she was playing a leading role on the comedy "Murphy Brown" with actress Candice Bergen.  Read how Candice got her to see a doctor and how she was diagnosed.  

 

Better yet, listen first-hand to her story right here.  

 

 

The latest update: eye movement, lid retraction, dry eyes, Blepharitis, neck pain, Vitamin D, and TSH level

Greetings everyone!  It's been awhile.  I have some new news.  

Eye Movement:  Apparently my eyes are still on the move, as they have continued to move in and out but after a period of stability they're changing again.  One eye receeded 1mm, the other eye moved outward 1mm.  And the right eyelid is beginning to retract again, and this time, you can visibly tell.   

For the longest time my right eye looked virtually normal, and only my eye specialist could tell there was the slightest hint of an issue with the lid retraction.  But this past Tuesday when I met with him at the Kellogg Eye Center he informed me that my right eye had changed, noticeably this time.  The fissure measurement, which measures total eye opening, has increased in my right eye.  That's caused by the lid retraction.  

In addition, the oil glands that surround my upper and lower eyelashes are plugged, which is causing Blepharitis which is a swelling/inflamation of the eyelid.  My right eyelid is a bit swollen and you can visibly tell.  He has me doing a warm compress in the morning and again at night, then pushing down on the upper lid with my fingers, and pushing upward on the lower eyelashes, to help secrete the oil from the now-warmed glands.  And he also gave me a prescription eye ointment (Erythromycin, for use not as an antibiotic, but as an aid to open up the oil glands.  (He explained it has this purpose beyond the antibiotic nature of the medicine.)  Because of the lid retraction and the blocked glands, of course it's expected my eyes would become drier and they are.  So I'm using my eye drops throughout the day to keep the eye surface comfortable.

Meanwhile, I saw my endocrinologist on Friday morning and had the usual tests for the TSH, T3 and T4.  In addition, I'm having neck pain in the area of my thyroid gland.  My doctor has asked me to have another ultrasound of my neck, which I'm going to have this Friday.  I'll report back then.  He also ordered a C Reactive protein test with the standard battery of blood tests to determine if there was any inflamation in my body (this test can't tell you where the inflamation is located, but it can be useful when done with other tests such as ultrasound where you're looking for something suspicious, or possibly inflamed.)  Like the thyroid.  I already know I have thyroid nodules, one is 3mm and the other is 5mm.  So we'll be trying to determine if I have more, of if their size changed.  Again, I will post more when I know.

I spoke to my endocrinologist this afternoon, and he explained that my T3 and T4 levels are in the normal range, but my TSH went from .21 last time (and .24 before that) to .024 this time.  So the TSH level is suppressed to say the least.  So beginning this weekend, my PTU dose will change from once daily, to once daily M-F and twice daily Saturday and Sunday.  We'll see if that makes a difference.

I've been on a prescription dose of Vitamin D (50,000 IU) once per week, and that improved my levels to 44.5, when 30-74 nanograms per milliliter (ng/mL) is normal.  So that's good!

So there is quite a bit going on.  But that's the latest.  I'll let you know how the thyroid scan goes this Friday.  I'm hopeful there is nothing new but we do need to get the neck pain checked out.

 

Thanks everyone and good night.

 

 

Your input matters, take part in AARDA's strategic planning survey

Hi everyone.  As a board member of American Autoimmune Related Diseases Association* (AARDA), a national non-profit based in southeast Michigan, I'm helping to create awareness of a public survey that is in place to gather feedback in guiding AARDA's priorities in programs, services and research for the next five years.  

Autoimmune diseases affect people all across the world, with over 50 million Ammericans alone living with an autoimmune disease.  There are over 100 autoimmune diseases, including Graves' Disease which I have, plus others that are more common like Celiac, Rheumatoid arthritis, Lupus, MS, Scleroderma, Psoriasis, Alopecia, Vitiligo and more.

Please take this opportunity to provide your input.  Every voice counts.

Take the AARDA survey now by clicking here.

 

*

 

 

And to learn more about AARDA and to go directly to this site, click here.

 

Reminder: This Saturday, January 21, 2012. Graves' Disease Support Group meets in Ann Arbor, MI

Hi everyone!

 

Just a friendly reminder that the Graves' Disease Support Group is meeting this Saturday at the Kellogg Eye Center, in Ann Arbor, MI.  If you live in the area please plan on attending.  This is the 2nd event (I went to the first which was excellent!) and I'm sure it'll be every bit as good as the first event that was held last year.  I hope to see you there!

 

Click here for details: Kellogg Eye Center Graves' Disease Support Group

Twitter chat coming up on January 10, 2012, 12:00pm noon, Eastern Standard Time (presented by the American Association of Clinical Endocrinologists

Hi everyone.  I'm pleased to help get the word out about the American Association of Clinical Endocrinologists' live Twitter chat that is planned for Tuesday, January 10, 2012 at 12:00pm noon, E.S.T.  You can learn more by clicking here to go to the American Association of Clinical Endocrinologists Facebook page.  Questions will be taken about thyroid dysfunctions and/or their signs and symptoms.  

Live near Belleville, IL? Graves' Disease and Thyroid Support Group announces upcoming meeting

Helping to get the word out on an upcoming patient and family support group meeting coming up in Belleville, IL.  It's organized by the Graves' Disease Foundation.  

 

For more information, click here to go to the Graves' Disease Foundation Facebook page. 

 

Or, click here to learn about ALL of the Graves' Disease Foundation support groups.  The second link takes you directly to the national Graves' Disease foundation web site.

 

Kellogg Eye Center to host Thyroid Eye Disease forum in Ann Arbor, MI, January 21, 2012

 

For those of you who live in the area, or who can make arrangements to attend, I highly recommend you consider attending the above event.  I went to the first one and it was outstanding!  I'm excited to catch up on the latest information related to Graves' Disease.  I hope to see you there.  Remember, this is a free event and doors open at 8am.  

 

To register for this event, email Jodi Douglas at annarborGDF@yahoo.com, or phone 310.709.8383.  

 

Click here for registration, location and parking details

Day 3: Graves' Disease & Thyroid Foundation annual patient and family conference, Boston, MA

The conference came to a close this morning with the final session being an open question and answer session with the panel of expert doctors in the field of Graves' Eye Disease.  As I sat at my table I reflected back over the last few days and realized what an exceptional experience this had truly been.  And everyone in attendance felt the same way.

To experience the life-altering autoimmune disease called Graves' Disease is one thing, but to be in a room packed with patients (and some of their family members) who've all gone through this journey was quite humbling.  And to have the privelege of hearing from the world's foremost doctors was equally humbling.

Here's a short summary of what the doctors are working on in the study of Graves' Disease:

Dr. Anca Avram:  assessing impact of tissues after RAI and the affect of radiation on organs

Dr. Barbra Miller:  investingating ways to provide adquate care to patients who would not otherwise have access to it; addressing the lack of surgical volume (as she stated even true general surgeons are disappearing).

Dr. Larry Wood:  Teaching people to look for premature gray hair in younger people, because even one premature gray hair may be a sign of a malfunctioning thyroid gland; educating parents on what to look for in their children

Dr. Cesar Brinceno:  Standardization of clinical trials; investigations of pathogenesis of thyroid disease

Dr. Ray Douglas:  preventative clinical trials with regard to Graves' Eye Disease (where you could take a medication to prevent the eye sumptoms/involvement), with results being available in about 2 years; testing of more drugs in those with severe eye complications; additional Rituximab testing (18 months long) with Dr. Terry Smith

 

And here is a photo of the panel of doctors as we were assembling this morning, plus Graves' Disease Foundation founder Nancy  Patterson (at left)

 

For more information, please go to the Graves' Disease and Thyroid Foundation website.

Day 2: Graves' Disease & Thyroid Foundation

Hi again!  We had a great second day in Boston at the annual patient and family conference, "A Bridge to Wellness."  Here are a few highlights from the day:

 

Dr. Lawrence Wood, Associate Physician at Massachusetts General Hospital (retired) and Board Member, Graves' Disease and Thyroid Foundation

1) Thyroid surgery is a tricky surgery.  Two important questions to ask your surgeon are how many surgeries they do in a year and how many of those caused vocal nerve damage if any.

 

Dr. Scott Rivkees, M.D. Chair, Department of Pediatrics at the University of Florida College of Medicine

1) Graves' Disease affects 1 in 1000 individuals, or about 1 in 100 women; it affects 1 in 10,000 children, and more girls than boys; 2) children have lower remission rates; 3) 15-30% remission rate for young children; 4) the younger the child, the less likely it will ever go completely away; 5) there are risks with PTU in children (be sure to discuss with your child's doctor); 6) we have had no new anti-thyroid drugs in the past 60 years; 7) increased anti-thyroid drug treatment lengths do not equate to increased remission rates; 8) thyroid surgery is more challenging in children than adults.

 

Dr. Barbra Miller, Assistant Professor, Division of Endocrine Surgery, University of Michigan

1) complications after total thyroidectomy in children are not significantly higher than in adults; 2) thyroidectomy should be performed by high-volume thyroid surgeon; 3) click this link for information on University of Michigan's Division of Endocrine Surgery; 4) click this link for the American Association of Endocrine Surgeons Patient Education Site; 5) thyroid nodules > 1 centimeter should be biopsied; 6) an uptake scan of the thyroid can determine which thyroid nodules are "hot" and "cold" which helps to determine which ones should be biopsied; 6) It's important to follow thyroid nodules over time; 7) questions to ask you thyroid sugeron should includ how many thyroid operations have you performed, what is your recurrant laryngeal nerve injury rate and if zero, ask for volume of surgeries performed; what is your rate of permanent hypoparathyroidism/hypocalcemia; do you routinely use intraoperative nerve monitoring; 8) Recurrant laryngeal nerve injury is very important to understand, therefore need to find an experienced surgeon.

 

Dr.Alon Kahana, MD, PhD. Helmut F Stern Professor, Ophthalmology and Visual Sciences, Kellogg Eye Center, University of Michigan

1) 80-90% of Graves' Eye Disease occur within 18 months of Graves' Disease diagnosis; 2) 20% of Graves' Eye Disease patients have normal thyroid levels; 3) there is no magic bullet, each person's case of Graves' Disease is unique; 4) common symptoms of eye pain include pressure around the eyes, pain with eye movement, eye scratchiness with irritation or itching, and eye pressure; 5) there are natural lubricants that can help with eye pain issues including a warm compress to improve oil gland function; a cold compress to reduce eye swelling; lubricating ointment to reduce evaporation.

 

Dr. Scott Rivkees:  Chair, Department of Pediatrics, University of Florida College of Medicine

1) treatment of pediatric Graves' Disease is associated with excessive weight gain 

 

Dr. Ray Douglas M.D., PhD, Assistant Professor, Ophthalmology and Visual Sciences, Kellogg Eye Center, University of Michigan

1) there are two phases to Graves' Eye Disease, the active and stable phase; in the active phase there is active inflamation and passive congestion; 2) every patient should have a customized treatment plan; 3) eye swelling restrics blood flow in the eye area which causes the swelling, which can also cause scarring of tissue; 4) scarring can cause eyelid retraction; 5) there are 2 types of Graves' Eye Disease, fat disease and muscle disease; 6) there are treatment options available to patients with Graves' Eye Disease, including fat decompression, bone decompression and eyelid repositioning (surgery).  

 

It was truly a great day and it ended with a lovely dinner as a group where numerous awards were presented to the medical professionals and volunteers.  

Q&A:

What are foods to avoid with Grave's Disease?  Dr. Jeff Koff:  foods with iodine including kelp, seafood

Is there anything that can help with early Thyroid Eye Disease?  Dr. Ray Douglas:  A European study has shown that selenium may help in the early stages