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in reply to: Predictors of remission? #1182752

Thanks Kimberly! That helps a lot! Admittedly this would be a lot easier with a crystal ball. It doesn’t seem that there’s really any hard and fast rules about who reaches remission as far as demographics, so it seems as if I have as good a chance as anyone. After all, research shows smokers have a higher incidence of TED, but I’ve never smoked a puff and still got TED.

I’ll ask the eye doc to please clarify why he said TT would delay intervention vs ATD titration. I’m curious. It seems to me either one still involves a fair amount of waiting. I don’t see him until the end of the month. And I think the endo is just trying to have me think about the other option “just in case…” That, and as she said, it’s a lot easier to dose replacement hormone than ATDs. I have no idea how I’m feeling right now–maybe I really am moving to normal or optimal–I can’t remember how that would feel. I think the saying is “symptoms are confusing, but labs don’t lie”, so I’ll see how things look next week.

[scanders]

in reply to: Palps are coming back….. #1182715

I currently take 5mg alternating with 7.5mg. Prior to that I’d been on 7.5mg daily, and the dose prior was 5mg daily. I actually thought 5mg was going to be “the” dose, but she thought FT3 was still too high, but FT4 was smack in the middle. I wonder if we’d given it more time if that wouldn’t have been a good dose for me, but unfortunately there’s no crystal ball to know what’s going to happen with each dose change. I just know that I’m learning more all the time, gaining a frame of reference. I didn’t feel well with that slightly high FT3, but I feel worse here in the bottom of the range. I know that now, and that can only help as I move forward, making decisions with my doctor. Best of luck!

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in reply to: Palps are coming back….. #1182711

Hi Calbears,
I can get palps when high or low…and sometimes after a caffeinated beverage.

I’m right there with you at the moment of foggy, dizzy, tired and sad. Wanted to cry today, and I’m not really sure why. (Unless it was when my assistant said she has in fact noted a change since my dose reduction, and it hasn’t been an improvement? Or because of the TED, and it seems to be worse with each change up or down, and it’s just really uncomfortable at the moment… Sigh…)

My doctor has me trying an alternating dose right now. I have to set it up in a pill box to remember which dose to take on which day, of course, at this point. (Mind like a sieve right now.)

I’m reading here about the folks that have been on this roller coaster for a few years now, and I feel kind of wimpy complaining and it hasn’t even quite been a year yet. Hopefully you’ll have some answers with your lab work tomorrow. Hang in there!

[scanders]

in reply to: Coping with Graves #1182684

I spent last summer thinking it was menopause, so accepted the symptoms as “normal”…except the weight loss. Having struggled with my weight my whole life, I should have known that I’d never lost an ounce without trying, let alone 20 pounds. I guess the weight loss didn’t look very good, since people were actually worried about me, so I went for a check up, where I had to point out this weight loss. I had some labs, and was sent the next day for an “urgent” referral to the endo. I was diagnosed right after Labor Day when the TRAb results came back. I’m pretty sure in hind sight that I had eye symptoms a good 6 months before the Graves symptoms. Of course, now I know that in no way, shape, or form was how I was feeling normal, but then, I may not have exactly been thinking clearly, not that I’m thinking much at all just now, either.

I’ve had atenolol on board a few times. Initially from my GP when the initial labs came back, then again when my levels became hyper for the second time. I got dizzy, but by that time the palpitations seemed pretty manageable without, and were certainly better than feeling like I was going to pass out or fall over.

We shouldn’t settle for not feeling our best, and with the ups and downs I guess we’re developing a frame of reference for where we don’t feel well, and eventually that can lead us to where we do feel well. And it’s good to know there’s another treatment option if the MMI just doesn’t do the trick (but I’m hoping it will.)

[scanders]

in reply to: Coping with Graves #1182682

Hi Rene,

I’m currently on the roller coaster, too, and quite frankly, I’m getting a little sick of it. Endo says I seem to be very sensitive to the methimazole, and now is wanting me to think about TT if I can’t get stabilized soon. It will be a year of treatment with MMI in September and while I’ve had normal labs, they just don’t stay that way. (You’re right, they can change in a hurry.) I, like you, feel kind of lousy at these lower levels, but endo is pleased they’re in the “normal” range. She did, however, agree to lower the dose just a smidge, as my brain fog makes it hard to function at work. I didn’t feel great when at the higher end of “normal”, either, but I could function better cognitively. (I’ve come to the conclusion that my normal range is narrower then the accepted “normal range”.) I am hanging on by my fingernails to the bottom of the “normal” range right now. I’m hoping I haven’t crossed over to overt hypothyroidism, as I did last time I got this low.(I don’t feel any better, maybe worse.) Then my antibodies doubled, as did my vision. Sigh…
So no, you’re not alone. (I try to be brave, but sometimes I could cry, too.)This whole patience thing is SO not my strong suit. And it’s very comforting to be able to come here and know that others know what you’re going through! Hang in there!

Christy

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in reply to: Eye Floaters #1066311

Interesting to think about. Last spring I fell and hit my head really hard. Then around Memorial day I developed a “spray” of floaters, sort of like looking through the windshield while it’s raining. Went to the optometrist who thought it might be related to the retina, and while he didn’t see anything, was concerned because of my fall and the symptoms. Sent me to a retina specialist for an exam, and I got an all clear. Now, I’d already noticed for the prior 6 months or so that every pair of sunglasses I tried was “bent” and hit my right eyebrow. The retina specialist and optometrist didn’t notice that my eye was swollen…but then, I didn’t, either. Anyway, it would seem I probably already had TED symptoms with the swollen eye, grittiness, foreign body sensation, etc, and around this time all the other Graves symptoms were there, I just didn’t know it was anything other than normal for this time of life (thought it was “the change”.) I did already have one big floater, which now I can say showed up around the time of the swollen eye, related or not. But just another coincidence that the “spray” of spots showed up at the same time as my Graves symptoms? Makes me wonder, not that it really matters or that anything can be done about it. And while initially quite annoying, now it’s just a blip compared to the double vision and appearance issues.

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in reply to: Trying to make sense of TED #1182629

Thanks, Ladies! I’ll check those links out. It sounds as if this is all clear as mud. But, it gives me something to thing about other than how miserable how I am. (Yep, no getting around the fact that I am absolutely miserable at the moment. Ever overhear someone comment that “she looks like a bug-eyed frog”? While it might be true at the moment, it was still hard to hear.) But still, not sight-threatening, just comfort and appearance are affected.
I think what’s also difficult is that no matter what I learn, there’s no way to speed up the process toward the fix. I just have to wait. The symptoms are treated as well as they can be at the moment. But for me, learning as much as I can makes me feel as if I’m doing something, even if it can’t/won’t change anything.

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in reply to: Double vision worse #1182469

No, it’s stuck on pretty well. It’s over my weaker eye, since my glasses hadn’t kept up with my Rx as my contacts had, and it was a bit fuzzy compared to my other eye. Now when I do cover that weaker eye, I get fall-down dizzy trying to navigate (balance? depth perception?), although I think I can see well enough with it to read most of the time. The eye doctor didn’t seem to think it was an issue keeping the same eye blurred. We’ll see.

[scanders]

in reply to: Double vision worse #1182467

Saw eye doctor today and no new prism for me. After the orthoptist tried for quite a while to make it work, the chin tilt needed already hurt my neck. I tried to tell him to maybe check with the doc and see what he thinks first, which he finally did. Anyway, my eyes are not any more crossed (yea!), and the vision itself is actually stable, but the muscles are so tight my eyes can’t look up with a normal range of motion, which is why I can’t seem to see single now with a prism without sticking my chin up in the air from the get-go. (That’s if I understood that right.) So they put some 3M professional grade film on one lens of my glasses (looks about the same as the press and seal wrap I’d been using), and now we wait and see some more for things to stabilize, as there’s still a fair bit of inflammation, and they would like the thyroid levels to at least be sort of stable. He’s not quite convinced that I won’t need an OD, at least for my right eye, but will defer to the other eye doc for that decision in a few months.

Honestly, it’s about a horse apiece as far using a prism or covering a lens, as far as actual vision and acuity. Neither is great, and both allow me to see single but I don’t get the neck pain with the film.

Christy (who’s still looking to find patience with this whole process…)

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in reply to: stress question #1182557

Thanks for the replies. I, too, was wondering, if I could just be feeling general anxiety, although in 50 some years that’s never been an issue…before Graves, and even then, not so much. So maybe that’s something that has changed for me. Or, maybe because I haven’t really been in a stable place yet, maybe these few weeks of stress are enough for a little set back. Not sure I like either one of those options, but it sounds as if it’s a possibility that it could send one back to hyper. Well, for whatever reason, I’m “off”. I’ll just watch and see, and work really hard on my stress reduction, and see what the labs show in a few weeks. Geez, I never thought it would be this hard, or take this long, to stabilize. (God surely has a big sense of humor to give Graves and TED to a control freak. Soo many things I can’t control or predict…Hopefully, I’ll learn some patience from all this.)

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in reply to: Double vision worse #1182466

I hope, too, that the new prism can happen soon. I see the eye doc in 2 weeks.

I’ve decided that if people ask, I will share. I work in healthcare, and many of my staff were worried about me last summer (even before I realized there was anything abnormal going on.) Some tried to give me helpful advice for diagnosis. So, I felt it only fair to clue them in when I found out it was Graves, and then TED. One nursing assistant that’s in nursing school told me by sharing my experience, I helped her pass her endocrinology unit!

I am fortunate to have a great team to work with, and they’ve been very supportive. (But I still feel like I’m “giving in” to the disease by acknowledging that I’ve got some visual limitations…but I’ve got them, whether I like it or not.)

[scanders]

in reply to: Double vision worse #1182463

Still a bit discouraged. While I mostly work as a department head, I like to help out the floor nurses when I can–they like that I’m willing to help out. I’ve even taken whole shifts in a pinch. But I’ve found there are some nursing tasks that I just can’t do right now because of my vision. (Ironically enough, administering eye drops to patients is incredibly iffy because of my lack of depth perception.) My employer has come to expect that I will help out. So I had to first acknowledge that this really is affecting me, then ask my eye doctor for a letter supporting this. Sigh…

But, I also recognize that I’m very lucky that I’m able to still do my primary job. What if hands-on nursing was my primary job?! I’d be in big trouble as far as my livelihood. So while I occasionally whine, I also count my blessings that my employer is willing to work with me through this.

Still advised by eye doctor to wait a bit if I can before getting a different prism to see if the changes in my eyes have stabilized somewhat. (Glad Press and Seal wrap makes a nice alternative to Scotch Magic tape on the lens. Nice, even layer to cover the whole lens. Stays on nicely, too.)

[scanders]

in reply to: Double vision worse #1182462

Thanks Shirley! It wasn’t that I was concerned, but I was curious, so I asked. They looked at them after I asked if it mattered. Like I said, I don’t know everything yet about this stuff. And since that last appointment I have read some pretty reliable references and guidelines that state the hyperthyroidism should be stable. Maybe not in remission, but stable, so I don’t think I can necessarily fault them at the end of the day. I am not stable yet. In the past 6 months I’ve been very hyper, very hypo, and now hyper again. I’ll have labs next week. My eyes are still changing a fair amount, as evidenced by this latest bump in the road. (It hasn’t gotten any better.) The strabismus surgeon is a pediatric surgeon. I’ll see him again next month, and broach this subject again. I think he was the least concerned of the doctors about the thyroid itself in relation to the eyes, and since this is the most pressing problem, he is following me for now. But the two eye doctors work pretty closely together with the graves patients, so we’ll see how things shake out. I do sense that they would like to fix my eyes as much as I want them to.

The prism was noticeable, but the tape on the lens or the patch sure gets even more attention. My depth perception is way off. (Golf league started Monday–how fun was that with one eye?) If I truly can’t stand it, I can get another prism, but I’m trying to wait until the appointment in May. I’d hope we’d have a better idea of how fast and how much change has occurred. (Even the Fresnel prisms can add up, after all.) Maybe, just maybe, one of my prisms could work again? Is there ever any improvement? I’ve never been good at being patient.

Thanks again for the support on this board! It goes a long way knowing that other people understand what it’s like!

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in reply to: Double vision worse #1182460

Thanks, Kimberly. I’m trying to accept that it could be a lot longer than I’d hoped before there can be a fix with the eyes. And I’m thankful that while this is frustrating, at least it’s not sight-threatening. (Guess I’ve got a little optimism after all? I’m trying…)

[scanders]

in reply to: Communication with MD #1182420

I thought that thyroid and eyes were 2 separate processes, but I didn’t really know, so I asked. I found different answers with my reading. I think I’ll just give #2 a call on Monday and revisit this. Tactfully. Interesting to see how he responds now when a colleague gives a conflicting answer. (I like #2 a little better, to be honest, and not just because I liked his answer better.) I don’t have a lot of options in-network, and don’t want to burn my bridges. If my eyes are really unstable, so be it. I wait. (Although I didn’t get the impression there was a stability problem when I left the office; only later with that email.) However, if thyroid was an issue, as #1 believes it is, then I still think he should have asked about it or looked it up, as a standard of practice if he believes it is related to the eyes, if that makes any sense. And yes, that would be TSH, FT4 and FT3. (And maybe he should have done more than just push on my eyeballs. I guess I’m still crabby–goes with the hyper for me.)
Thanks for listening.

P.S. I found that pushing on the eyes is called ocular retropulsion. Yep, there’s a name for it. And there’s enough sources that state hyperthyroidism should be stabilized before surgical treatment, that I’ll go along with that. But I still think the MD should have been aware of my status, or asked me, given the disease process he is treating.

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