Graves Eye Disease and Hyperthyroid

From PTU to Methimazole, let's try this again. Plus an update on my eyes.

PTU to Methimazole:

It's late and I just got home from my local CVS drug store where I picked up my new prescription.  After nearly 5 years on Propylthiouricil (PTU) I'm switching back to Methimazole.  Yesterday when I visited with my endocrinologist I told him that I hadn't been feeling well, and I could tell something was amiss.  In addition, I've been having difficulty concentrating, feeling irritable, and in general not well.  My lab results also came in first thing this AM and they're all out of the normal ranges.  In adjusting my medication he wants me back on Methimazole to see if we can get a handle on the TSH, T3 and T4 levels where the PTU has failed.  So that's what I'm going to do.

The importance of thyroid hormone and your brain functioning:

I also learned a lot about the effect of thyroid hormones on your brain during my visit yesterday.  My doctor explained to me that the thyroid hormones (which regulate your body's metabolism) are essential to good brain functioning.  Even though it weighs only ~ 3 pounds, your brain represents 25% of your body's metabolism.  It takes a lot to keep it working properly.  My doctor explained that people with poor thyroid functioning often feel edgy, irritable, even angry, and sometimes depressed.  

My eyes:

On Tuesday I saw my eye specialist at the U of M Kellogg Eye Center who went through my normal 2+ hour screening and examination.  He explained I have corneal abrasions (scratches on my cornea) on both eyes, about 25% on my right eye and a little less on my left eye.  That's from blinking on dry eyes and seem to be getting drier by the minute.  The good news is that my eyes, especially my right eye, has receded slightly.  At least my eyes didn't move outward.  But the bad news is I'm having pain with my optic nerves at least a couple times per day.  It mostly happens when I turn my eyes quickly from one object to another, but not always.  It's like a searing hot pain behind the eyeball.  Oh it's painful.  If you've read other parts of my blog you know that I've been dealing with Graves' for almost 7 years now and my eyes are still moving.  That's more than twice the length of time of eye involvement for me vs. the average time it takes a patient for their eyes to settle down.  Frustrating for sure.  Especially when you never know where they'll wind up.

So that's it.  I'm switching medications, I have issues with my eyes and my brain functioning is impaired due to the ever-fluctuating thyroid hormone levels which at this point in time are all abnormal in measurement.  I'm headed back to my endocrinologist in 4 weeks to see if there is improvement.  

Some days I feel like I can conquer anything including Graves' Disease; other days I feel like it's conquering me.  Anyone else struggling as I am lately?  Feel free to share your story.  I'd love to know.  

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.

Labs improve, reducing daily dosage of PTU

Good news, my labs improved, they are right inside the normal range, and I'm reducing my dosage of PTU to Monday-Wednesday-Friday only.  50mg each day.  That's it, let's see how it goes.....I'm keeping my fingers crossed!