Graves Eye Disease and Hyperthyroid

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.  

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.

 

 

A goiter, with nodules?

Greetings everyone!  It's been awhile since I posted an update about myself.  For such a long time I have been on PTU, once daily.  Well, I still am.  But now there's a new development.  Lately I've noticed my voice has gotten hoarse, and I'm constantly having to clear my throat.  So I asked my doctor about it and he sent me to an Ear, Nose and Throat specialist to have my vocal chords examined.  He also ordered a thyroid ultrasound.  

Today I received in the mail the results of the ultrasound--diagnosis?  Benign goiter with tiny nodules.  It's late at night and I've just opened up all of my mail (I'm on vacation, thankfully, so I don't need to be up early) and I can't wait to find out more.  With tomorrow being Good Friday, I'm quite sure my doctor won't be working.  So that leaves me waiting until next week to call him.  

Does anyone have any experience with a goiter and nodules?  I'm going to do some research this weekend about it and I'll let you know what I come up with.

Until then, for everyone celebrating the upcoming holiday, have a wonderful Easter.

Lab results are in . . .

I just pulled into my driveway and walked out to pick up my mail.  There, in my mailbox, was that oh-so-familiar "stamp" on the envelope from my endocrinologist's office.  I have to be honest, when I opened the envelope I thought my lab results would be nearly identical to the last labs from a few months ago.  After all, since March of this year I've been cruising along on the lowest dose possible of Propylthiouricil (PTU) and taking it only 3 days per week.  And feeling great!  But . . . that wasn't the case tonight. 

My TSH level slipped a bit (remember, the Thyroid Stimulating Hormone tells the T3 and T4 hormones what to do, and TSH levels fall with an over-active thyroid), from .46 to .26.  That puts me just below the lower limit of the "normal" range which starts at .35. 

While I'm disappointed a bit, I also realize this is still not bad at all.  For one, I feel really good.  Two, my T3 and T4 levels are ok.  And three, even though I need to increase my PTU dosage from 3 days a week to 5 days a week that in itself isn't so bad either.  That's where I was about 8 months ago.  And I felt fine then.

That all said, after 5 years post-diagnosis, my eyes are still moving (they've receded to their normal position now, but moving nonetheless), I feel fine, and my medication dose is still very low at 50mg PTU 5 days per week. 

The one thing Grave's Disease has taught me is to be more patient, that's for sure.  There is no quuick fix, you never know what tomorrow will bring, and remission is no longer my immediate goal like it once used to be.  Rather, the every day joy of feeling well is much more important to me now, medication aside.  And yes, I do look forward to the day when I no longer have to take it, but for now, I'm staying the course and making the most of each and every day that I wake up feeling well.  And that, is priceless.

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!