Graves Eye Disease and Hyperthyroid

Questions to ask when diagnosed with Grave's Eye Disease (#6): What about eye surgery?

For many patients with Grave's Disease at some point your doctor may discuss with you treatment options in the event you have severe eye proptosis, impaired vision (double vision), eye swelling, etc.  For many patients one of those options may be surgery.  This blog post includes the types of questions I'd suggest you ask your doctor when contemplating any kind of eye surgery related to Grave's Opthalmopathy (GO).  The surgery often performed on patients is referred to commonly as orbital decompression.  Although my eye issues resolved on their own and I did not require surgery myself, I have learned quite a bit.  I hope these questions help make you an informed patient.

1) Under what circumstances should I consider eye surgery?

2)  What are the risks associated with eye surgery?

3) If surgery is necessary, when should it be performed?  This one is very important.  For patients who have Graves Opthalmopathy (eye bulging) the "active" phase can last for quite some time.  Many resources suggest 30 months on average.  In my case, my eye bulging (proptosis) and eyelid retraction lasted upwards of two years.  When surgery is performed too soon (unless medically necessary due to loss of vision and based on your doctor's recommendation) there is a possibility you may overcorrect the eye problem which may later resolve on its own.  Therefore, it's important to discuss with your doctor when surgery may be appropriate for you.  Remember, everyone's circumstances are unique.  Just make sure you discuss what is best for you.

4) How successful is eye surgery of this nature?

5)  How much experience do you have in performing this type of surgery?  And specifically on patients with Grave's Opthalmopathy?

6) Is there such a thing as typical results? 

7)  How close to "normal" can I expect to look?

8) What is post-operative recovery like, what should I expect? 

9) Are there any precautions I should take following surgery?

10) What other non-surgical options do I have to consider?

11) Is surgery ever performed in combination with non-surgical procedures?

These are just a few questions that come to mind.  There are many resources available that discuss surgery as a treatment option.  One book that I highly recommend is by Elaine Moore and it is dedicated to Thyroid Eye Disease, hence the name of the book.

Frequently asked questions regarding Grave's Disease & Hyperthyroidism

  I'm excited to share with you 31 frequently asked questions patients often have, as written by Mary Shomon on her thyroid-info site!  This is a very comprehensive list which includes everything from a broad definition of hyperthyroid, treatment for Grave's Disease, side effects of anti-thyroid drugs, side effects of RAI, and much more.  This is not just an excellent place to start for those of you who've recently been diagnosed with Grave's Disease, but Mary Shomon is a foremost author on the topic.  I recommend her books (along with several other authors) which you can find in the right-hand column of my blog for reference. 

Don't wait!  Click here for Mary Shomon's list of 31 Frequently Asked Questions patients often have about Grave's Disease and Hyperthyroidism.

 

Grave's-Eye-Disease: Importance-of-medical-care-surrounding-you

They say timing is everything, and that was certainly the case today. While driving into work I thought about how lucky I am to have really great medical care--my family physician, my endocrinologist and my eye specialist are are excellent health care providers.  Then tonight when I got home I saw I had received a personal e mail from someone who later posted a comment  on one of my posts.  In it she describes her recent diagnosis and the fact that her medical professionals are immediately likely to recommend RAI treatment.  Which is so common....without any alternative discussion. 

So tonight I decided to drop a quick note here highlighting the importance of not only surrounding yourself with quality medical care professionals, but also making absolutely sure that you are an informed, knowledgeable patient.  It takes doing some homework, some reading, a bit of investigative research.  It will take up some of your time, especially in the beginning.  But I can sum up the result of doing just that--it is SO worth it!  I have great discussions with my doctors.  I have right from the beginning.  They always let me ask questions based on what I researched.  They take time to explain the pros and cons of various treatment options.  In plain terms they explain how I'm progressing, what it is in tests they perform that demonstrate whether I am or not.  I feel like I'm a participant in my own health care and I feel great about that.  Based on readers commenting here or personal e mails I receive, I've found that isn't always the case.

So please, do yourself a favor and take a little time up front when you've been recently diagnosed to read a couple of books, check out others' stories, and prepare yourself for the journey ahead. After all, when it comes to Grave's Disease, it's something you'll be living with for the rest of your life.

Can Grave's Disease Affect Kidney Functioning?

Recently, a reader of this blog posed a couple of questions that I didn't have experience with, one of them related to kidney functioning and potassium levels and whether or not Grave's Disease could affect them.  Since they were new questions here, and I didn't have any experience with them, I thought I'd post the questions to one of my favorite authors on the subject of Grave's Disease--Elaine Moore.  She has an excellent forum on About.com:  Thyroid Disease called Ask Elaine Moore . 

Here is part of her response regarding kidney functioning.

"Rarely, Graves' disease can affect kidney function. This occurs when complexes of antigens and antibodies lodge in kidney tissue. Changes in kidney function can cause increased levels of blood creatinine and blood urea nitrogen or urinalysis tests can show the presence of protein or red blood cells. This isn't very common although it can occur." ~ Elaine Moore, from About.com:  Thyroid Disease, posted 12/31/08 at 9:34pm

You can click HERE to read the rest of her post that addresses the other questions regarding potassium and increased heart rate. 

Questions to ask when diagnosed with Graves' Disease (#5): What about my eyes? What should I be on the look out for?

A common occurrence in Grave's Disease is eye bulging (proptosis), also called exophthalmos.  This is caused by swelling behind the eye itself.  Because your eye socket is not flexible, your eye has no choice but to be pushed outward.  Hence the eye bulging.  It can be mild (as it was in my case).  It can also be severe.  Still others will have no symptoms whatsoever. 

It's very important you ask your doctor what to look for.  His/her answers may include things like:  a gritty feeling behind the eye, scratchiness, pain behind the eye, eye twitching, dryness.  In severe cases, you may also experience double vision or blurred vision because of pressure on your optic nerve.  If anything seems unusual with your eyes, go see your doctor immediately! 

In addition, your eyelid(s) may retract more than normal (as mine did).  This will cause more of the white of your eye to be exposed.  You can see it in my eye photos I have posted.  My right eye was so bad I had to tape my eyelid shut at night.  Or squish my face into my pillow which I did most nights. 

Click on the underlined words below for more information:

For a definition of exophthalmos, click exophthalmos defined

Eye proptosis is measured by a device called a Hertel Exophthalmometer

To see my before, during and after proptosis photographs, click Linda's photos

For information on how I relieved the dry, gritty feeling in my eyes, click relieving dry, gritty feeling in my eyes

Remember, the most important thing you should do is be on the lookout for ANYTHING unusual when it comes to your eyes.  See your doctor immediately.  Make sure your doctor explains what you should be looking for.

Questions to ask when diagnosed with Graves' Disease (#4): What are my treatment options?

Probably THE most important question you'll ask.  And the answer(s) will be THE most important options you'll need to consider, and understand.  Thoroughly.

Based on how your doctor answers, this is one of THE areas where you'll know if you have a good doctor or not.   Does he/she go over all the options?  Or, does he/she only recommend agressive Radioactive Iodine (RAI) as the ONLY option and not tell you about others and why they do/do not make sense for you to consider?

Each option should be discussed thoroughly.  You should ask about risks, side effects, long-term considerations, pros and cons of each. 

Remember, each case of Grave's Disease is as individual as the unique patient.  I highly recommend you do your homework BEFORE discussing options with your doctor.  You'll be that much more informed.  I recommend several books on the left-hand side of my blog. 

In short, make sure you understand what ALL of your options are.  Be part of the decision making process--after all, it's your body, and you have to live with it for a long, long time.

Questions to ask when diagnosed with Graves' Disease (#3): What is the difference between Grave's Disease and Hyperthyroid?

Right at the top of the list of questions to ask your doctor (and read about yourself) is:  what is the difference between Grave's Disease and Hyperthyroid?

Maybe you didn't know that Grave's Disease is actually an autoimmune disorder.  That means your immune system, for whatever reason, is the problem--not your thyroid itself.  Your thyroid gets attacked by your immune system.  Grave's Disease happens to be the most common form of hyperthyroid.

You should explore this discussion with your doctor.  Understanding the underlying root cause of your Grave's Disease is important in your treatment.

Questions to ask when diagnosed with Graves' Disease (#2): Exactly how does the thyroid gland work anyway?

Q#2:  Exactly how does the thyroid gland work anyway?

OK.  I picked this as my second question because nearly everything you deal with in your treatment will come right back to the answer of this question. 

The answer will inevitably come around to the topic of thyroid hormones.  There are two.  T3 and T4.  Trust me, you'll be tracking these little gems for the rest of your life as you go for periodic blood workups and await the results.  They're the ones that when their levels get out of whack cause all kinds of problems.  They buzz through your body and control your metabolism.  Too much, and your body revs up.  Too little and it slows down.  Hyper-thyroid.  Hypo-thyroid. 

You should read through medical resources and you need to ask your doctor.  It'll let him/her know you WANT to know.  And you DO need to know.  It's your body.

Here's a simple, straight-forward explanation I encourage you to read.  Won't take but a minute.  It'll be a minute you won't regret. 

Click here to learn : How your thyroid works

You'll also be referred to an endocrinologist, a specially trained doctor that deals with the glands in your body.  Like the thyroid.  You should have a healthy respect for these specialists.  Your glands basically run your body.  They make ALL of your body's hormones.  You'll be amazed.  I certainly was.

Click here to learn what an endocrinologist is.  At a minimum, you should at least glance at it; better still, read through the handful of paragraphs.  You'll begin to see just how complex your body is. 

Questions to ask when diagnosed with Graves' Disease (#1): let's start with the basics

I promised posts on specific questions you should ask when first diagnosed with Grave's Disease.  The very first thing I asked was "what is GRAVES disease?"  I had no clue.  My family doctor explained the basics to me over the phone, then said she'd refer me to a specialist, an endocrinologist. 

First things first:  you really need to inform yourself of exactly what it is you're dealing with.  Homework at this stage will serve you well through your course of treatment.  You absolutely need to be an informed patient so YOU can participate in the decision making process and to know whether or not your doctor(s) is one you're comfortable with.  So many patients who e mail me are not and switch a time or two to find one they trust.  I'm lucky--my endocrinologist is very patient, thorough, professional.

Did you know that Grave's Disease is actually in the autoimmune family?  Yep.  You should know what is happening within your body to cause the thyroid condition.  Check out the books I recommend on the left column of my blog.

Don't be shy.  Ask questions.  Read books.  Jot down notes.  Knowledge really is power--and you don't have to learn it all over night.  Be patient.  By all means, be an informed patient.

Maybe I was lucky, but so many have a difficult time in getting a proper Graves' Disease diagnosis

The timing of Mary Shomon's e newsletter I subscribe to couldn't have been better.  Recently I've responded to several of you, here on my blog and via e mail to those of you who emailed me directly, who expressed frustration at trying to get a proper diagnosis, having to switch doctors, not getting proper tests done, and more.  I was excited to see the article in my in box that speaks to those very issues!!  Not only are you not alone, but you're also about to be equipped with some very practical advice that can help you.  By clicking here, Mary Shomon's Q&A with Dr. Jan Nicholson, you'll find a short article that will help make you a more informed patient when it comes to your proper diagnosis, along with more information on the "mind-body" connection to thyroid disease.  I think you'll really like it.