[KimberlyOnline Facilitator December 21, 2016 at 10:01 am Post count: 4288]

#1060809

Hi all – the GDATF will be hosting a live Q&A session on thyroid eye disease on Monday, January 9th from 10-11:00 PST with TED expert Dr. Raymond Douglas!

To participate, all you have to do is post your questions in this thread, and Dr. Douglas will join us on Jan. 9th to answer them!

You can also visit Dr. Douglas’ web page and Facebook Page here:

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

Facebook Page: https://www.facebook.com/thyroideyediseaseawareness/

Home Page: http://raymonddouglasmd.com/

We’d like to extend a huge thank you to Dr. Douglas for his commitment to patient education. Looking forward to lots of participation from this community!

[KimberlyOnline Facilitator January 6, 2017 at 9:25 am Post count: 4288]

#1184902

Bump – don’t forget that Dr. Douglas will be here on the forum this Monday, January 9th at 10:00 Pacific time to answer your questions about thyroid eye disease!

If you have questions, please post them on this thread!

[KimberlyOnline Facilitator January 9, 2017 at 9:50 am Post count: 4288]

#1184903

Welcome, everyone, to our online thyroid eye disease (TED) chat with Dr. Douglas! Please feel free to post your questions on this thread, and Dr. Douglas will be joining us at 10:00 PST.

I’ll kick us off with a few questions that have come up in the past on this forum…

[KimberlyOnline Facilitator January 9, 2017 at 9:50 am Post count: 4288]

#1184904

1. Are there supplements known to help TED?

2. Are there specific foods that I should eat or avoid if I have TED?

3. Once I’ve been through all the surgeries for TED, what are the chances it will come back?

4. Why do I have only one eye affected by TED?

5. What are the chances of a Graves’ patient having severe enough TED to require surgical intervention? What can I do in terms of prevention?

[KimberlyOnline Facilitator January 9, 2017 at 9:54 am Post count: 4288]

#1184905

6. What is the role of steroid and radiotherapy in TED?

7. Are there any recommended books, websites for patients?

8. Does the choice of treatment affect my chances of getting TED? Specifically, does RAI increase the odds of worsening or new development of TED?

[KimberlyOnline Facilitator January 9, 2017 at 9:59 am Post count: 4288]

#1184907

From D.M.B. via Facebook:

Is there anything to help ease the pain from TED? I’m one month post op and still have the horrible pain as before surgery.

[DrDouglas January 9, 2017 at 10:03 am Post count: 10]

#1184908

Welcome !! I am happy to take your questions– please excuse any typos !

Pain from TED is usually two types– one from dryness which is sharp and stabbing and the other from orbital pressure

The pressure pain takes either an injection to relieve the a senroy nerve compression or surgery tasrgeting this nerve…

[DrDouglas January 9, 2017 at 10:04 am Post count: 10]

#1184909

if still having pain and pressure then it depends on the surgery done.. When we do surgery and there is pain pressure it is relieved 90% of the time

The injection also works about 90% of the time….

[DrDouglas January 9, 2017 at 10:06 am Post count: 10]

#1184910

Thanks so much !!

It has always been a pleasure working woth the GDATF. I began working with the group when in Los Angeles and now back in practice in Los Angeles it is a sincere pleasure

[DrDouglas January 9, 2017 at 10:10 am Post count: 10]

#1184911

Kimberly wrote:

1. Are there supplements known to help TED?

Selenium has been examined the most. It is a natural supplement and has very little toxicity when taken modestly (200mcg). IT has been show to help the eye symptoms in certain populations in Europe. It may also reduce antibody levels. I often suggest it to my patients when they are diagnosed to try for about 6 months.

It can be purchased at any health food store.

[DrDouglas January 9, 2017 at 10:15 am Post count: 10]

#1184912

2. Are there specific foods that I should eat or avoid if I have TED?

This is an area under intensive investigation. There are many foods including gluten, meat etc that are pro inflammatory and linked to worsening autoimmune disease. But be careful of fads and many companies just trying to sell a product.

Advice I often give is to be balanced — I encourage a trial eliminating various pro inflammatory foods from the diet and transition to a largely gluten free (if possible ) and red meat free diet to determine how one feels and functions. There is a list of foods that seem to aggravate inflammatory conditions available online.

Be careful not to achieve balance in life.. Many patients can become almost obsessed with diet but always remember to cultivate relaxation and mental health — I often recommend massage therapy and meditation to help ease the strain of this disease. The immune system is controlled in many ways by the nervous system

[DrDouglas January 9, 2017 at 10:21 am Post count: 10]

#1184913

Once I’ve been through all the surgeries for TED, what are the chances it will come back?

This answer largely depends on one factor– SMOKING…

For non smokers, typically the chances are very rare the eye disease will ever return — about 1 in 50. Even if it does it is very mild and often responds well to steroids and rarely requires more surgery etc.. IT is VERY rare you would need more surgery.

For SMOKERS– the story is totally different. Disease in these patients lasts longer, is harder to treat and returns more often. n fact sometimes it never really goes away.

There are always exceptions to every rule but reactivations are not preventable..

[DrDouglas January 9, 2017 at 10:27 am Post count: 10]

#1184914

4. Why do I have only one eye affected by TED?

The answer is not known… Graves disease is the most common cause of one eye bulging and two eyes bulging.. We don’t know why one eye or orbit is affected more than the other side, but it is very common

When there is large asymmetry I wait for a few months to determine if the other eye will “catch up ” and get the disease. But if both are stable for 3 months and you are a non smoker then unlikely to change.

Surgery can be customized to achieve and return the appearance back to normal in the vast majorty of patients. Be careful in choosing a surgeon as few physicians do these cases often and the require precision to achieve great results. Even then, problems can happen and its important to get good opinions

[DrDouglas January 9, 2017 at 10:39 am Post count: 10]

#1184915

5. What are the chance[size 32][/size]s of a Graves’ patient having severe enough TED to require surgical intervention? What can I do in terms of prevention?

Surgical intervention is indicated or suggested as an option when the vision is being affected by compression of the optic nerve or dryness exposing the eye. OR there is so much bulging the eye is not being protected.

However– more and more people are understanding the psychological impact of the disease due to disfigurement . Many patients come to me and have pulled away from life activities due to this disease. It is not a cosmetic problem …

A cosmetic problem is trying to improve normal appearance.. This is a reconstructive problem where we are trying to restore the appearance.. Many patient feel guilty about wanting to return to their normal appearance– but they should not. I help patients restore their appearance in the same fashion we would after a car accident. No one would question why someone would get a cut on their face closed with stiches and done in a way to reduce scarring but many patients worry about restoring their appearance after his disease.

So for many the indications include disfigurement due to the disease process. Fortunately we and others have pioneered many techniques to do this in a very minimally invasive outpatient way. IT is not right for everyone but I give patients the options and let them decide. Many opt for no surgery or small things but it is their decision to hear all the possible options and risks involved.

In general about 10-20% of people with Graves disease get surgery…

[DrDouglas January 9, 2017 at 10:45 am Post count: 10]

#1184916

7. Are there any recommended books, websites for patients?

It is very easy to generate tons of advice on the web that is invalid or opinion.

I start by recommending “mainstream” organizations such as the American Thyroid Association for general knowledge.

We also try to put a education material on our website raymonddouglasmd.com in addition to videos etc. We will also generate educational material at my new institution at Cedars Sinai medical center in Los Angeles.

Then patients can consider alternate therapies and discuss their own circumstances with a physician open to these treatments. For example much on the internet does not apply to every patients so I help patients move toward information that is important to them.. For example, I can point them to links about meditation or diet.

But it is important to have a physician (endocrine, orbit surgeon etc) that helps guide the choices because misinformation is plentiful.

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