[Gabe]

#1060158

First, my apologies for abandoning my favorite group of people for this past month….it’s been a blur of activity but thats a poor excuse!

I’m about 3 months post TT and feeling pretty good. My Levo has gone from 50 mcgs to 100 mcgs to 125 mcgs….I suspect I’m a little hyper and will probably drop to 112 at next visit. Starting to feel some of those terrible hyper symptoms creeping up (can’t sleep, hot flashes, heart rate, etc). Not as bad as before TT. Back to Endo early October. If symptoms worsen will insist on getting levels checked and see for sure.

I have noticed that every time my dose has changed the adjustment to the new dose has not been pleasant, especially for people in my life. The physical adjustments have been pretty easy and expected. The mood and behavioral adjustments have been exaggerated…angry, sad, crying jags, depressed…and then it goes away. Only happens for the first week of dosage change. My family wants me to forewarn them the next time and I suspect they may send me on a trip for that week…haha.

Back to work full time, which has been consuming most of my time. It’s been one of our better summers on the east coast so I’ve been enjoying the weather also.

My biggest complaint is my eyes. They continue to get worse. I’ve been to the ophthalmologist every 4 weeks and each time my prisms are adjusted. I’m now in a 6-up left eye prism and thank goodness for the Fresnal stickons…without those this would be costing a fortune.

I remember Shirley saying this was the worse part of the Graves’ journey for her and I totally agree. I’m completely frustrated and impatient. Docs say it has to run its course and become inactive before doing the corrective treatments like strabismus surgery. There’s no pill you can take, no way to truly deal with the double vision, and I HATE IT!

My favorite thing to do is read and TED makes it so difficult. BUT I’m grateful to be feeling better….in 8 months its been the Graves’ diagnosis and medication roller coaster, the TT surgery, sprained ankle, and shingles. So now the only remaining issue is the eyes….I’m hopeful this resolves soon.

Cheers and hugs to all,,,

Karen

[snelsen]

#1180848

Hi Gabe, old and new friend!!!
I will try to write more tomorrow, I am so tired, I can barely SEE!
Speaking of seeing, I have 6 up prisms in both lens’. and now an additional Fresnel prism on one lens. I have had a new onset of double vision in the morning, especially, am pretty devastated that after all the surgeries I have had, some train wrecks and some wonderful that my eyes still rule my life.
I have “fit-over” sunglasses, I am still very photo phobic, and wear a visor for the glare.
Yep, the TED thing has been the worst and life changing in a bad way for me
I have thought of you often, and it is so so nice to see your name again!!!!

THe double vision is terrible. Just terrible. So glad you have conquered most of the other big issues you had.
I will write more tomorrow or the next day.
Shirley

[SueAndHerZoo]

#1180849

Hi Karen. Thanks so much for checking in. I appreciate the “warning” about the dose change mood swings and will try to remember to prepare family and co-workers if and when my dose changes.

I am terrified of developing eye symptoms and have been obsessive about every little vision blip I have. I’m so sorry you have to go through this – it’s so unfair. As you said, you have conquered most of the other stuff so this, too, shall pass, but I’m sure it doesn’t seem like it’s passing fast enough.

Thanks for the update and please continue to check in.
Sue

[Stymie]

#1180850

Hi Karen!!

I’m so sorry your eyes are getting worse!!

I love to read just like you and when my eyes hurt I seem to find myself thinking about books on tape? Have u thought about trying those? I wonder how that would be. But I’m sure it would give your eyes a rest.

Hope you get some relief soon!

Diane

[Kimberly]

#1180851

Thanks for the update, Karen! Really hoping that you can get this TED issue stabilized soon. As for the dosage changes, perhaps you can “dump or delegate” as many tasks as possible if you know that a change is coming up. Any stress that you can take off yourself in advance will be helpful. Of course, giving your family a heads up sounds like a great idea, too.

[Gabe]

#1180852

Thanks All!!

Diane, I will definitely try books on tape to give my eyes a break. Great idea.

Shirley. Isn’t this just miserable. I had to laugh…I too have Fitovers and wear a visor for the glare…a very attractive combination. I used to care so much about how I look and will still try to look my best, but it’s all about my eyes at the moment. Stopped wearing eye makeup also. Called my ophthalmologist today and insisted on another appt so now going back on 9/9 because I think I’ve advanced to needing prisms in both eyes also. I’m so sorry that this is surfacing for you again after completing the surgeries. That’s so scary…the fact that it could haunt us forever. Stupid damn GD.

Sue, thanks for your constant encouragement…you’re a gem!

Hope springs eternal!

Karen

[amosmcd]

#1180853

Hi, Karen–

I’m so sorry that your eyes are still a problem! It’s so easy to take good vision for granted until something like this happens. Damn GD, indeed! Thyroid I get, but eyes?? WTH?? It just seems so damn random. I hope you can find something to help you.

I complain about my post-TT experience, but you’ve got a double-whammy going on, which is not fair. The mood swings are hard to deal with, but definitely not your fault. I hope things stabilize with your dose soon.

As far as those wear-over sunglasses, I *chose* to wear those because they were so much cheaper than prescription sunglasses. I have noticed they’ve made smaller lens shapes so they’re not so dorky-looking. I have always needed to wear a hat out in the sun even with large lens sunglasses because the glare bothers my eyes, and I can’t wear those tiny fashionable sunglasses because they just don’t cover up enough of my eyes. I’ve given up caring what I look like in the summer, because I’d rather be comfortable than fashionable. But it would be nice to be both!

Hang in there, and I’m thinking good thoughts that things will get better for you soon.

Amy

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