Graves Eye Disease and Hyperthyroid

Reducing Dosage of PTU (Propylthiouricil) Again

I saw my endocrinologist 10 days ago (routine 8 week checkup).  Last week I received a copy of my lab report from his office along with his note:  reduce PTU to 5 days per week.  That makes it twice in a row now I get to reduce my PTU dosage.  Last time was early January to 6 days per week, now I'll drop to 5.  Good news and I'll take it!      

 

Changing PTU Dosage/Frequency

A real quick post this evening.

I saw my endocrinologist this morning and explained that when he had me adjust my PTU dosage in early January from 7 days per week to 6 days per week, that a few days later after my first scheduled "skipped" dose I had Grave's symptoms reappear.  Not too severe, but I didn't feel 100% right.  I was fine in a day or so and then on week #2 of my second scheduled "skipped" dose the same thing happened but slightly less severe.  He said this was the first time he had heard of anyone having symptoms reappear when eliminating a dose by one day per week.  He went on to tell me it is much more common when reducing the dosage (lowering the milligrams that is) or going off the medicine altogether. 

Since the lowest dose of PTU available is 50mg, he suggested that the next time my lab results call for a dosage change we should consider splitting the pill in half vs. eliminating another day altogether.  One person posted a comment here some time ago advising that her doctor had her do this very thing so she could g--r--a--d--u--a--l--l--y reduce the dosage over time.  It has been suggested that the more gradual the decline/reduction in medicine and over a longer period of time the higher the likelihood you have of attaining remission, and the higher the likelihood it will last.  I should have my lab results back within 5 days so we'll see what the future holds.  More then!

Reducing Dosage of Propylthiouricil (PTU)

On January 9, 2009 my PTU dosage was adjusted to 6 days per week instead of 7 days per week.  

FIRST WEEK:  A few days after my first "skipped" dosage, I felt a couple of irregular heartbeats and my heartbeat rate increased for one full day (about 80 bpm) before it started to fall back to a more normal range.

SECOND WEEK:  A few days after my second "skipped" dosage I felt a similar response as above but not quite as noticeable.

WEEKS SINCE THEN:  No problem. 

For those of you experiencing ongoing Grave's Disease symptoms, you know how discomforting they can be.  The symptoms can appear as you adjust to your dosage changes (as I've written about here on eyesee.typepad).  That this slight recurrence of symptoms occurred for only a couple of weeks once I made the change is very good news indeed!

3 Years Since Grave's Disease/Hyperthyroid Diagnosis

Hi everyone!

It's so hard to believe that it has been three years now since I was first diagnosed with Grave's Disease.  Little did I know then just how much I'd learn about this little gland in your throat called the thyroid gland and the important role it plays in your overall health and well being.  And does it ever!

Like so many of you, I found myself riding the ups and downs that came my way through the twists and turns of treatment and recovery--including a remission that lasted a brief 7-months.

Through the past three years I've discovered quie a lot about the field of medicine, medical treatment, what it means to have a good team of doctors, to have family and friends who support you, and more.  But perhaps more than anything, I rediscovered what it means to be resilient, to move on even when you simply don't feel like it, to handle an uncertain future bravely, and to not be embarassed or ashamed of something that's happened to you that is completely out of your control. 

We all face these challenges throughout our lifetimes and in many different combinations.  For some reason however, I became acutely aware of my own coping skills and how I grew stronger with the passing of time, not weaker.  What else surprised me was how I went from trying to hide what was happening to me to not just being more willing to discuss it, but wanting to really see if I could help others going through the same thing.  Which of course brought me here. 

Today I'm doing well--feeling the best I have felt over the entire past three years.  Dare I say just like my old self?  You bet.  Last week's lab results were right on the edge of borderline normal, holding steadily there for quite some time now.  My eyes are normal.  When tomorrow morning arrives, I'll do what I have done every day for months now:  wake up and take my daily dose of 50mg of PTU and look forward to what the day has in store for me.  Life is good.  Thanks for dropping by.

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.

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.

It's always nice to get this kind of news: reduce 50mg dose of PTU to 5 x per week

That's it.  I get to skip two days a week on my dose of PTU.  That's Propylthiouricil.  Say that fast five times :) 

In all seriousness that's what I expected when I got the lab report from my doctor in the mail today.  I actually thought I'd be able to cut back more, but not this time.  So I'll do just as the doctor ordered and wait till I see him again in April. 

At least the news was good!  I'll take it.

One week later . . .

Well it's been exactly a week since I stopped the Propranalol.  And just when I thought I wouldn't feel any side effects, given I was on such a low dose, I was wrong.  I can feel it in my heartbeat again, that old familiar beating intermittently interrupted by a hard 'pound' and a little light headedness.  Remember, the Propranalol levels out the heartbeat and helps maintain a nice and steady beat.  I don't have that right now. 

I see my doctor first thing tomorrow morning.  Am I anxious?  Yep.

Well what d'ya know, my heartbeat is once again too slow.

Just saw my endocrinologist this AM.  I found it odd that he listened to my heartbeat for an unusually long time, then prompty blurted out "your heartbeat is too slow." 

OK then.  If you've been reading my blog you know that I went back on Propranalol to control the body tremors, hand tremors, etc. that came back after being off the medicine for months.  You might also recall that I went off of it because it slowed my heartbeat down too much, made me lightheaded and dizzy.  So now it's time to cut the daily dose in half, to a very low 10mg dose just once a day.

Let's give it a go.  Otherwise, I feel fine.  Just watching my eyes to see how far they're going to travel this holiday season.  Ha Ha!!  That is move outward, as in proptosis since they went on the move recently.  Let's just say I hope they stay close to home and don't venture out too far.  More chuckles.  Sometimes you just gotta laugh when you're coping with any illness.  And right now I'm in a festive mood, the sun is shining brightly, it's a gorgeous day out, not too cold, snow piled up everywhere!

Steady she goes . . .

A quick post tonight--having just returned from out of town on vacation.

I've been taking PTU since mid-September (since my Grave's remission lasted only 7 months).  How's it going?  No improvement.  Nothing.  My TSH is very low at the same level it was when I first went on the medicine about 45 days ago.  At my doctor's request, I'm doubling up the dosage once a week. 

So far, so good when it comes to the Propranalol reducing the tremors I recently wrote about.  It hasn't slowed my heartbeat down, at least not yet (as it did last time), so no dizzy spells.

Back in transition-mode I am, taking it one day at a time.  Funny thing, I seem to be quite used to it.

I'm also enjoying having some needed time off on vacation.  I feel completely stress-free at the moment and am looking forward to another short trip out of town to visit friends out-of-state, where I once used to live.  More when I return . . .

Interesting times . . .

Well hello there!  Yes, it has been awhile, a few weeks since my last blog post.  Why you ask?  Well, for one I've been incredibly busy.  No excuse mind you.  Mostly I've been emailing those of you who opted to e mail instead of post a comment on my blog, which is just fine.  I've written a note about the collection of people I've had the pleasure of encountering online over on my "about" page -- to say I've been touched would be an understatement . . . .

So why interesting times?  For one, I have an appointment with my endocrinologist first thing in the morning and the appointment can't come soon enough.  The fine hand tremors have spread to my entire body--legs, arms, even my head.  If you sit next to me in a meeting and look closely enough you can tell.  Now that's weird! Let alone distracting. I've actually got the shakes.  And I haven't told anyone . . . at work that is . . . so only you know.  The propranalol I used to take, and no longer do, quieted all that but I stopped taking it since it slowed my heart beat down too much.  We don't want that.  Maybe there's another solution.  We shall see.

So it will be interesting to hear what my doctor has to say.  I'm also interested in getting updated labs--very interested.  PTU has been much more tolerable for me than Methimazole this time around.  That is if I ignore the fact my hair is once again falling out.  But at least it's not as bad as before.  I'm hopeful the medicine is working and I'm not subclinical hyperthyroid anymore.  More to come . . .

As an aside, tonight sort of reminds me of the flight back from China I blogged about a month ago, when I sat on the plane in the glow of my iPod.  The power has been out in my neighborhood for a couple of hours now.  It's pitch black out.  That is, except for the lone few lights I have on inside my home, and my computer, thanks to one of those fancy gas powered (LP gas, not gasoline) backup generators I had installed a couple of years ago--Briggs & Stratton.  I didn't mess around :)  The power goes out around here enough I figured it'd be worth my while.   And on a night like this it surely is . . .

6 months off of Methimazole (Tapazole)--still feeling great

Today, being August 1st, marks another bookmark in this chapter of living with Graves Disease.  I've officially been off Methimazole for six months now.  Like hitting the one-year mark sans Aspartame I just blogged about, I can hardly believe it.  I wondered then how I'd feel--would the symptoms come back?  In my case, no.  So far, so good. 

A business colleague I've known for years today asked me how I was doing, how I was feeling.  He knows enough of what the past two years have been like and yet doesn't know great detail.  I laughed when he said, "you're like a new person, I can't keep up with you any more."  I must have had a funny look on my face because after a long pause, he continued, "I can't!" 

I'm still chuckling inside about that one....and feeling quite good.

From exhaustion . . . and back. What a difference!

Someone said to me last week, "I can't believe the energy you have, what happened?"  I laughed actually.  The question was posed by one of the very few people I confided in after the first month or so of being diagnosed.  At the time my heart palpitations and rapid heartbeat were at their worst, I was also the most exhausted I'd ever felt.  And I stayed at rock bottom for awhile until my medicine kicked in and started to affect my thyroid hormone levels.  I was so tired at times I wouldn't even speak up in a conversation, with family, friends or even at work--I was just too tired to get the words out.  It's just so hard to explain how you can feel so bad, all from thyroid hormone levels.

Today, that seems like such a long time ago and in a sense it really was.  I can't believe how "normal" I feel, like my old self before I got sick.  I'd forgotton what it felt like, but today there is no doubt.  And it feels great.

So how is upper eyelid retraction related to eye protrusion?

I asked my endocrinologist how it is that the upper eyelid retraction is related to the eye protrusion.  He explained that the protrusion causes the upper eyelid muscles to stretch, which pulls the eyelid up.  So when the eye recedes, the muscle relaxes and the lid appears more normal.

The books I link to do a great job of explaining the various eye muscles, (including pictures) what they do, how they work, and how they're affected by Graves Disease.  I encourage people with Graves Disease to do their homework by reading as much as you can from reliable sources.  It makes you a more informed patient, more knowledgeable in your treatment plan, and importantly, better prepared to cope with all that you'll go through.

One of the very best books that shows in great detail how the eye works, with diagrams clearly explaining how everything is connected, is Thyroid Eye Disease by Elaine Moore.