Stupid Thyroid...or...WTF??

First...Happy New Year, Everyone.  May this year bring happiness, prosperity, and good health to all.  That last bit, I'd really like that for me, too.

I know not many really read this blog.  I mostly have it just as a place to do a bit of "Doogie Howser" journaling.  If it touches a chord with anyone, great.  If not, that's fine, too.

That being said, I'll update with news of my thyroid issues.  I haven't really written a lot about it of late mostly because nothing hugely notable has been going on.  Well, there was a bump.  About a little over a year ago, Levoxyl (my thyroid replacement drug) was pulled from the shelf to be reformulated.  I was pretty horrified at that since that was the only brand that didn't send me into a weird tailspin of odd symptoms because my body didn't care for the other formulations.  When it finally was re-released, I was pretty happy, and was able to go back on to my regular dosage. 

Unfortunately for me, because of the new formulation, it was a bit too strong for me.  I had the craziest symptoms, anywhere from weight gain (oh joy!), to odd reactions with my eyes.  My muscle control was all off to where one of my eyes wanted to try and shut on me.  I couldn't stay focused straight on without one eye wanting to do this weird thing and look upwards.  It was kind of scary.  Opthamalogists couldn't figure it out, even my doctor and her PA were puzzled. One opthamalogist ventured a guess that I might have MS.  Scared the crap out of me.  I  tried to explain to them that this has happened before and to please check back in my file.  Finally, the PA reworked my dosage to 100mcg Levoxyl 6 days a week and a 1/2 tablet once a week.  That did the trick and I started feeling and looking normal again.  

Near the end of last year (weird saying that already), my endocrinologist ordered a routine ultrasound for my neck.  I thought nothing of it.  So on Dec. 7, I went in. I was just lying there on the table while the tech was scanning my neck and doing her notes on the images taken.  I noticed she seemed to be taking more scans and making more notes than usual, but I thought that was all in my head.  We finished up, and I left.

About a week later, my primary care doctor called and left a strange message for me on my voicemail. I thought it strange because it has been years since I saw her personally.  Usually when I go in for phycsicals, it always seems to be her PA's.  She left a message saying that she had a copy of my ultrasound results (routine because we've always sent copies from my endocrinologist to her so everyone has the same info on me).  However, this time, she said she needed me to make an appointment with her if I hadn't already made one with my endo.  This made me nervous, but I figured my endo was a great doctor and would call me if she noticed anything abnormal.  

That Thursday, I got that dreaded call.  It was 8:30pm.  The caller ID said it was my endo doctor's office.  I knew this couldn't be good because she only calls me that late if something is up.  She tried to break the news to me as gently as she could, but there it was.  The ultrasound results showed that there was an anomaly in the left thryoid bed.  It appeared that there were thyroid cells growing back!!  This doesn't happen very often, but leave it to me, as par for the course of my wacky 'out of the norm' thyroid history...i was that unusual patient who's thyroid is trying to grow back.  Just great.  I THOUGHT she said it was 1-2 mm big.  Unfortunately for me, I was wrong.  When I went in for my follow-up appointment, I discovered that the actual size is 2cm x 1.1 cm x 1.1cm.  CENTIMETERS!  That's 10 times the size I originally thought it was.  

My doctor tried to reassure me that we were going to do whatever tests we could to find out what is really going on with me.  I have a biopsy scheduled for Jan. 15.  We're starting there, and will figure out what to do depending on the results.  Either way, I know the drill.  Somewhere along the line, there may be surgery to removed whatever thyroid cells are in there.  The other thing is that there may be another RAI scan test, possibly RAI 131 where they kill off the thyroid cells.  It could be even both the surgery, PLUS RAI 131.  I'm not happy.  The gamut of emotions are so up and down, mostly down.  I know we can take care of this, and I know what to expect.  However, that still makes me mad that I have to go through things like "low iodine diet" plus being off my Levoxyl for a month.  Surgery, and all that crap.  Anyone who's done that knows that is about the most uncomfortable thing to deal with.  This is an understatement.  I wouldn't wish this on my worst enemy.  I find myself tearing up a lot, but then being sarcastic about what's happening.  Like I said, rollercoaster.

I'm dealing with this the best way I can.  This isn't to say I don't have my moments (see above).  I'm trying to keep busy.  I may try to do something creative to get these emotions out.  I'm just having such a hard time focusing on anything.  I keep talking myself into trying to be positive, but it's just so damned hard.  I thought after 2 surgeries and treatments, I wouldn't have to deal with fucking thyroid cancer again, and here I am wondering what the hell that stupid anomaly is in my throat.  

That's it for now.  Hopefully my next posting will be better.

It's Been Awhile...

To my Thyroid Sisters and Brothers...

For the most part, I was pretty stable with Levoxyl 112 mcg.  I'm not sure how many patients out there experience side effects when not using a certain brand of thyroid replacement meds, but I for sure do.  The brand name Levoxyl go pulled from the shelves May 2013.  This threw me into a bit of a panic because thus far, I've discovered through a series of experiences, that all other brands/generics OTHER THAN Levoxyl really mess me up.  

Being that I'd tried the generic version of it, Levothyroxine,  and Synthroid, but both made me feel terrible, we resorted to Tirosint.  I felt fine for about 8 months, but as the end of the 8th month approached, I began to exprience symptoms of fatigue, but always felt antsy when I did try to get sleep...leg cramps from time to time.  However, the worst part for me is that I've got this weird thing where my left eyelid wants to droop.  My vision is fine, but at times my left eye wants to only stay open 1/2 way.  It sucks.  

All of the above symptoms all happened around the same length of time of usage of both Levothyroxine and Synthroid.  This is the only reason I'm not freaking about about there being a neurological issue or optical issue.  I really want my Levoxyl back.  This blows.  I noticed a definite pattern this time around.  Certain lighting, such as overcast or flourescent lights, seems to trigger the eye droopage.  This causes me to overcompensate by trying to open my eye more by lifting that eyebrow.  I feel lame when this happens. Oh and also, stress.  Stress definitely triggers this, too.  Ugh.

I was at 112 mcg of Tirosint, but the PA at my endocrinolgoist dropped me to 100 mcg.  It's helping a little bit, but I've still got the symptoms.  My last visit, he found out that the Levoxyl reformulation was completed on March 3rd,  the day before my birthday.  This is a good sign.  Unfortunately, it hasn't been released to the wholesaler that my pharmacy uses.  Hopefully this happens soon because I'd really like to look normal again.  (well, normal for me...haha)

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My henna business...

Well, that is finally starting to pick up again.  We're coming out of the winter months, so people are starting to book again.  YAY!!!  I've got a few fun bookings coming up, so I'm excited about that.  :)

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Artwork...

For the time being, I'm putting my painting on the backburner.  I'm really enjoying working in clay again.    Last year, I did my first live demos and sales of my work at the OC Fair.  I had such a great time, I'm definitely signing up to do this again for 2014.  

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As of 2012...

I've been volunteer teaching Painting and Pottery classes at the Braille Institute in Anaheim.  I am by no means a teacher, but it's been an interesting process as I learn my way through teaching visually impaired students.  You might say, we're learning together.  I teach them techniques that I know how to do that might help them complete an idea they might have.  I've encouraged a few of them to enter their artwork into the Shared Visions Art Show :)

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So that's it for now.  Since I've discovered the Blogger app for my iPad/iPhone, it'll be easier for me to update here more often.  Stay tuned also for a few posts about my upcoming trip to Spain with my mother-in-law.  

Some recent henna:

Some of my students' work at Braille:

Some of my pottery:

Be AMAZED!!!!

First and foremost, before I even get anywhere into a mad novel of sorts, I have to post about my upcoming solo artshow at Hair West. That's the postcard to the left. <------

For more info on that, check out my Events page @ http://www.lernie.com/events.html.

I'm working on a few small pieces to put in the show, and a couple of new newer pieces will be there, too.

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Ok, now on to other current stuff. For those of you Thyroid Sisters/Bros out there, latest update: So far the Doc is keeping me on my same dosage of Levoxyl. It's still a huge pain because I have to keep track of what dose is on what day since she's got me alternating my dosages. One day is 112 mcg and the next is 125 mcg. I'm not looking forward to the end of the year, however, as she is planning on taking me off my meds, YET AGAIN, so I can have ANOTHER RAI-123 Scan test. YUCK!!!

Anyone who's been off their thyroid meds, esp. those of you who have NO thyroid left will commiserate on this with me. It's like you go into this incredibly deep depression and feel like you literally have a 200 lb. weight laying on top of you. It totally bites. At any rate, the scan test is to make sure that there are no active Thyroid Cancer cells running amuck inside my body. I don't think there are, but best not mess with anything and take the stupid test.

I saw the weirdest thing this weekend. Chalk it up to people are freakin' CRAZY!!! My kids and I had gone down to Temecula with my sister and her kids to watch a musical that one of her students was in. On the way back to her place, driving down the I-15 to Elsinore, there was an unusual amount of traffic. We're saying unusual because there's NEVER any traffic in this particular area. We both gathered there might've been some sort of accident.

As we neared the area where everything was at a stand still because traffic is trying to maneuver around these stopped cars, we begin to slowly drive past partly because of looky-loos. As we do so, we see this car stopped in the emergency lane beside the FAST LANE. This isn't the strange part. The strange part is that there is this woman who appeared to be in her 30's standing in the FAST LANE totally bitching out the dude in the driver's seat. She's also waving her hands at traffic who are stopped in front of her as if to say "GO ON! GO AHEAD AND HIT ME! KILL ME NOW!" then her waving back at the driver in what must've been her car "THAT'S WHAT YOU WANT ISN'T IT???"

Bear in mind, it was one of those strange things that makes you want to rub your eyes and ask, "Did you just see what I saw?" Everything was completely slow-motion. I think all of us drivers were worried this crazed woman was going to start darting across the other lanes of traffic. Truly, it makes you wonder what got into that person that she felt the need to do such an insane thing. I've been perusing the news wondering what happened to that couple. Hopefully the driver was able to coax the woman back into the car without her getting hurt.