Thyroid Eye Disease Awareness & Education Seminars – October 2018
- Posted on: Feb 26 2019
In October 2018, Dr. Raymond Douglas held the first Thyroid Eye Disease Awareness and Education Seminar in Los Angeles, CA. The goal of these seminars is to provide patients with comprehensive information about thyroid eye disease from a variety of leading experts, as well as provide an opportunity for those with thyroid eye disease to meet in a support group setting.
At our first seminar, attendees saw lectures from three physicians:
- Dr. Raymond Douglas, Oculoplastic surgeon
- Dr. Babak Larian, Thyroid surgeon
- Dr. Pejman Cohan, Endocrinologist
For those who were not able to attend, we recorded each lecture so that everyone has access to the information that was shared!
History of Graves’ Disease
Graves’ disease was first written about by Irish physician Dr. Robert Graves. He found a series of four women who had a combination of an enlarged thyroid gland, elevated heart rate, and eye changes. He had no real clue what exactly was going on, but had a hunch that these three symptoms could be tied into one condition. Initially, he assumed that this was a cardiac problem since the most noteworthy symptom was the extremely strong heartbeat and rapid heart rate. Of course, over time we would come to learn that this is indeed an immunological disease.
Symptoms of Graves’ Disease
Graves’ disease presents a large number of symptoms. Dr. Cohan has extensive knowledge in the field, and through his expertise, a discussion about one’s symptoms and testing he can identify if a patient is suffering from Graves’ disease. In addition to the symptoms initially found by Dr. Graves, many patients experience the following:
- Mood disorders
- Weight loss
- Heat sensitivity
- Skin on the lower extremities becomes firm and rubbery (rare)
- Swelling of the fingertips (rare)
A relatively common secondary complication is Thyroid Eye Disease, which causes both a great deal of functional and aesthetic complications to the eyes and face.
Pathogenesis of Graves’ Disease
While Dr. Cohan and his colleagues continually conduct research and are making great progress in understanding Graves’ disease, there are still many unknowns. There is said to be a familial predisposition, meaning that autoimmune thyroid disease does tend to run in families. However, there are also contributing environmental risk factors that play a role. Environmental risk factors include:
- Tobacco and smoke exposure
- Too much iodine in one’s diet
- Infections (ex: Epstein-Barr virus seems to unmask those who are predisposed to Graves’ disease)
The strange thing about Graves’ disease is that, although rare, you can have perfectly normal thyroid levels, but still have the disease. As far as Thyroid Eye Disease, you could have your thyroid under control for years, but then this eye condition could develop at a later time.
Unfortunately, Thyroid Eye Disease is an immune system problem, rather than a thyroid problem, so treating your thyroid will generally have no effect on your eye.
Graves’ Disease Treatment Options
Dr. Cohan recommends three potential treatment options for patients, depending on a number of factors – medications, radioactive iodine, and surgery.
Anti-thyroid medications are popular in Europe and rising in popularity in the USA.
- Blocks the formation of new hormones
- Can take between 4 to 6 weeks to beginning working
- Treatment duration ranges from 18 to 24 months
- It is successful in about 50% of patients
2. Radioactive Iodine
- Swaps one condition for another
- Exchanges hyperthyroidism for hypothyroidism
- It can worsen the symptoms of Thyroid Eye Disease
- May be used in conjunction with anti-thyroid medications
- Pregnant women should avoid this option
- This is simply a surgery to remove the thyroid
- Very effective, but like all surgeries carries a risk
- Thyroid levels must be controlled by medication before the surgery
When To Have A Thyroidectomy
Although he is a thyroid surgeon, Dr. Larian believes that surgery is a last resort. While he has completed hundreds, if not thousands, of successful surgeries, there is always a risk and it is best to approach even the most routine surgery with a bit of caution.
The end result of thyroidectomy is to fully remove the thyroid. Graves’ disease is tricky because not only do you get an enlargement of the thyroid, but you also get an inflammatory and immune reaction. That inflammation is what affects the nerves in someone who has an active Graves’ disease.
When to have surgery:
- If non-invasive treatments do not work
- Finding of cancerous nodules
Dr. Larian works in close conjunction with endocrinologists, such as Dr. Cohan, to assess if a patient does indeed need surgery and their level of urgency and risk. It is generally an outpatient procedure, and Dr. Larian’s patients report experiencing minimal pain after surgery.
Thyroid Eye Disease
About 80% of patients with Graves’ disease end up having Thyroid Eye Disease, often within the first 12 to 18 months, but often the two diseases appear together. A good analogy for this is, think of a hurricane. Everyone thinks that the immune system stabilizes or goes into remission, and that’s it. But, like a hurricane, it comes through, then leaves, appearing to be resolved. However, it leaves a mess in its wake. That mess in this analogy is Thyroid Eye Disease.
Symptoms of Thyroid Eye Disease include:
- Red eyes
- Dry eyes
- Blurred or double vision
- Swollen blood vessels that cause upper eyelid inflammation
- Change of facial appearance (“eye bulging”)
If left untreated, this disease can cause:
- Extensive scarring
- Permanent facial disfigurement
- Disturbed quality of life
Leaving Thyroid Eye Disease untreated can significantly damage one’s quality of life. Beyond the physical issues associated with the disease, patients site a major change in personality as they notice their appearance changing. Patients often end up avoiding social situations, and even going out in public, as their self-esteem crumbles due to the appearance of their eyes bulging. Many patients also find their dating and personal lives suffer, and feel uncomfortable being out in public, having their photo taken, and even just being around others in general.
Teprotumumab for Thyroid Eye Disease
As a lead investigator on a new cure for thyroid eye disease, Dr. Douglas discusses how Teprotumumab works and who will be a candidate for this non-surgical therapy. For those who suffer from Thyroid Eye Disease, Teprotumumab is the first medicine of its kind to reduce eye bulging, swelling and pain to improve quality of life.
Dr. Douglas’ Approach to Orbital Decompression Surgery
Dr. Douglas offers a customized approach to orbital decompression. Orbital decompression seems scary, but it is actually done through an incredible small incision, often with no skin incision, or with a very small skin incision in the upper eyelid crease.
- Dr. Douglas works with each patient to come up with a customized plan
- The surgery usually takes about an hour to an hour and a half
- Many patients can go home the same day
- Patients generally recover within a week or two
This surgery is considered a functional aesthetic surgery, rather than cosmetic, since the effects of Thyroid Eye Disease, if left untreated, can drastically reduce one’s quality of life. Through the surgery, the aim of Dr. Douglas is to have you be you again, so you can have the fantastic quality of life that you deserve.
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Posted in: Awareness Seminars