Graves Eye Disease and Hyperthyroid

Thanks to everyone who's dropped by over the past year

Somehow I've managed to lose track of time!  My little blog just turned one year old. I forgot all about it and then all of a sudden it occurred to me while logging in this evening that it was about this time last year when I got started.

So thanks to each and everyone of you who has taken the time to check in, ask a question, post a comment, answer a question or send a private e mail.  I'm grateful to have met so many wonderful and thoughtful people along the way.  From book authors, fellow Graves patients, fellow bloggers, medical experts and more.  From all over the world (a total of 105 countries to date). 

It's because of all of you that I look forward to each new day of checking in myself as I pull the collection of thoughts in my head together and type away.  I'm truly humbled.

Many thanks.

"eyesee" Linda

Those 2 days a week really do make a difference

Ten days ago I learned from my doctor that I needed to go back to a full 7-days-a-week regimen of taking my Propylthiouricil instead of 5-days-a-week.  I knew it before I saw my doctor actually.  I could just tell.  You know what I mean . . . the heart beat isn't quite right, the fine tremor in the hands returns, etc.

So what's it like 10 days later?  I can tell the medicine is working.  The 2 extra days a week really have made a difference.  The heart beat is still off, but not all the time.  And the hand shakes are a tad better.  Already.  In ten days. 

See saw, see saw.  Let's give this a go for a couple months until I await the familiar stamped envelope in the mail with the unmistakable lab results in it.  My file folder continues to grow.

TSH? What to make of your labs results . . .

I highly recommend you subscribe to Mary Shomon's e newsletter from About.com.  This morning in my e newsletter was a terrific article clearing up the confusion when it comes to understanding your TSH levels.  Why a below normal TSH level means hyperthyroid, and why an above normal TSH levels means hypothyroid.  Very straightforward, easy to understand.  I highly recommend you read it.  It'll take you 5 minutes.  Well worth it from Mary Shomon. 

Here's the link:  Clearing up confusion on TSH

In addition, you can sign up for her e newsletter at the bottom of the article.  Please do!

Lab results: demystifying what they mean

In a recent comment I just entered, I asked patients to be sure they receive a copy of their lab results for their personal medical file at home.  I'd find another doctor if mine wouldn't give me a copy.

As I looked over my recent lab report, it occurred to me that there are 25 tests on the list including 3 that are thyroid related:  TSH, T3 and T4.

In addition, there are a bunch of other tests that look like alphabet soup:  WBC, RBC, HCT, and more.  They fall into 3 categories:  1) chemistry, 2) hematology and 3) hormoneanalysis.  What to make of them?

Here's a link that might help you  -- Blood tests explained, in alphabetical order, you can click for definition.  Click here and you'll find an alphabetical listing of many blood tests.  That way, you will be able to know that those I just listed mean white blood cell count (WBC), red blood cell count (RBC), hematocrit (HCT).  Here's another list I found to be helpful as well -- reference ranges for blood tests. 

Give one or both a try.  And if you find others you like, let us all know right here!

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Edit July 3, 2008--the above two links no longer work--Here are three I found useful in learning more about thyroid blood tests:

http://www.medicinenet.com/thyroid_blood_tests/article.htm (discussion of thyroid blood tests)

and two really good ones from Mary Shomon--

http://thyroid.about.com/library/howto/htthyroid-test.htm (how to interpret your thyroid test results)

http://thyroid.about.com/cs/newsinfo/l/bltest_values.htm (specific thyroid function tests and interpretation)

Whoa nelly! 5 x a week no more, let's go back to 7

That familiar doctor's envelop with my lab results was slow to arrive in the mail.  I phoned my doctor instead of waiting.

"I've reviewed your labs, your TSH has reversed trend, going in the wrong direction.  Let's go back to taking 50mg PTU every day of the week."

So simple.  Or so it seams.

But for those of you reading who are Grave's patients yourself, you know the real answer is:  Not!

Giddy 'up.

The waiting game . . .

Ah, it has been awhile since I've written a post.  All is well, or as well as can be.  Just saw my endocrinologist last week and I'm anxiously awaiting the results of the lab work.  You'd think I'd get used to waiting, but I simply don't.  I rush out to the mailbox to look for that familiar envelop with my doctor's stamp on it.  Very anxious to see if my TSH, T3 and T4 levels have changed and if so, in which direction.  Stay tuned . . . I'll be back in a day or two.

The Effects of Atrial Fibrillation and Tachycardia

Here are two links you'll definitely want to check out.  They are from About.com.  The first is a short, two minute video that explains atrial fibrillation, which many Grave's Disease patients will experience.  I did.

http://video.about.com/heartdisease/Atrial-Fibrillation.htm

The second is a short video that describes the effects of tachycardia (rapid heart beat), another symptom you might experience as a result of Grave's Disease or Hyperthyroid.

http://video.about.com/heartdisease/Tachycardia.htm

While you are on the site you might want to sign up for the e mail's from Dr. Richard Fogoros M.D.  You'll find many useful articles throughout the week.

Questions to ask when diagnosed with Graves' Disease (#6): What are the potential side effects associated with various treatment options?

This question is closely related to Q4 that I previously posted.  It's very important that you discuss and weigh very carefully the side effects associated with each treatment option as you and your doctor consider which is best for you.

ATD PATH

First, let's start with the Anti-Thyroid Drug (ATD) path.  Here are some very basic questions you'll want to ask your doctor as you consider this treatment option.

1) What are the potential side effects associated with taking the ATD _________________.  (Fill in the blank with the name of the specific anti thyroid drug your doctor suggests.)  For example, some people experience abnornal hair loss with some (I did).  Others experience sluggishness (I did, I switched medicines).  Others experience no problems whatsoever.  What's important is you know what the potential side effects are so you know what to look for.

2) What are the possible side effects associated with taking a beta blocker, such as Propranalol?  (For those of you taking a beta blocker).

3) What if anything should I be worried about if I'm thinking about becoming pregnant?  Are there any side effects associated with various medicines I should be worried about?  (Yes)

4) What is the liklihood the ATD treatment plan will lead to permanent remission?

RAI PATH

Next, let's look at key questions you'll want to ask as you explore whether or not Radioactive Iodine (RAI) Therapy is right for you.

1) What is RAI therapy?  How does it work?  What are the long-term consequences of RAI?

2) What is the liklihood I will become hypothyroid?

3) Will I need to take a synthetic thyroid drug for the rest of my life?  What side effects are associated with those drugs?

4) Should I avoid close contact with people after the RAI procedure?  Why is this important?

5) What is the liklihood of my Grave's Disease symptoms intensifying following RAI therapy? 

6) Is there a chance the RAI procedure could worsen eye symptoms (proptosis) that I've experienced?

7) How successful is RAI?  Is there any chance I may have to repeat the procedure?

These are basic questions.  You'll want to explore them thoroughly with your doctor.  And ask many more of your own.  My goal here is not necessarily to answer each individual question, although I do write about some of them throughout my blog.  Rather, my intent is to get you thinking about the kinds of questions you will want to ask as you prepare to discuss your treatment options with your doctor. 

Grave's Disease is serious business.  Finding the right treatment option that is best for you is too. 

Remember, there is no one-size-fits-all approach.  We're all unique even though many of us will experience similar symptoms over time.  How each of us responds to treatment will vary from person to person. 

Let me leave you with a few final thoughts:

DO ask questions.  Don't hesitate for one minute.

Ground yourself in KNOWLEDGE.  Self-discovery is a beautiful thing.

Find an INFORMED endocrinologist who is willing to take the time to discuss all treatment options with you. 

Explore ALL potential side effects associated with each treatment option.

Be a PARTICIPANT in your personal treatment plan.  It's YOUR body after all.

Remember to be PATIENT.  And be a good patient.

Hope the above helps.  Meanwhile, if anyone has any other suggested questions to ask, by all means post a comment below!

Thanks!

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.

And the cardiologist says?

The cardiologist walked in the room I was waiting in, sat down and said, "this will be easy" and he continued, ". . .your EKG indicated your abnormal heart beats occur from the upper and lower chambers of your heart (see also previous blog entry on PVC's).  What you have is rare, but not life threatening.  Your stress test was fine otherwise."

He also suggested my heart beat troubles stem in part from the fact I don't get enough sleep (I know I don't) and I'm under stress nearly continually with my job.  Even stress in a job I enjoy can be a problem.  Apparently it is.  Couple both with lack of fitness and voila, you have a 3 ingredient recipe for problems.

It's not life threatening.  I know more today than I did yesterday.  I will do something about it.

Hair loss & Propranalol? (Inderal)

Are you subject to hair loss when taking Propranalol?  You betcha. 

Back in June of 2007, I blogged about the side effects (hair loss) I experienced while taking Methimazole.  You can click Hair Loss & Methimazole to learn more.  If that weren't enough, I felt terrible the entire time I took it.  It was after I stopped taking it that I realized how much hair I'd lost--you could see it growing back in in a large volume of short stubby growth all around my head.

You may also have read on my blog that I made the switch to PTU when I had to go back on anti-thyroid drugs.  I also went back on Propranalol (Inderal).  Now I've noticed that months after stopping the Propranalol that the same stubby growth is back!  How about that! 

Seems as though the hair loss wasn't just limited to the anti-thyroid drug.  It was also a side effect of the beta block I took.  Talk about a double whammy! 

Remember, everyone reacts differently to medicine.  This is what happened in my case.  You do need to be prepared for the possibility because, if like me your hair is thin to begin with you'll notice.  Maybe no one else will.  But you will.  That's another tough one to handle.  Two medicines causing your hair to fall out.  Top that off with bulging eyes, retracted eyelids, and, well, you get the picture.

It was much worse while it all happened to me than I realized at the time.  That's a good thing.  I just plowed on with life trying not to think about it. 

Luckily, your hair grows back when you stop taking the medicine.  Even if it comes back in in the form of short stubby growth that sticks out everywhere, especially on those balmy days when you're having one of your very best 'hair days.'

My advice--I can almost guarantee no one else will notice but you.  It could be much much worse. 

Focus your attention on your overall well being, tackling the heart issues you may be facing, and doing everything you can to be healthy outside of the medicine you're taking.  It's not just about the medicine.