[scanders]

in reply to: Methimazole trigger Graves eye? #1183406

I can’t make much sense of it either, but my endo says I keep trying to make this black and white, and it simply isn’t. For what it’s worth, my TED took off after I became overtly hypothyroid while taking methimazole. A TRab around that time had doubled from initial diagnosis. So in my mind, I don’t think it’s necessarily the MMI itself, but the resulting hormone levels. When low, wouldn’t the thyroid gland become active in an effort to produce more hormone, and in turn, more antibodies are also produced by the gland?
And “stimulated” my foot! I just had eye muscle surgery two weeks ago (my right eye ended up over by my nose), and decompression a few months before that. It happened so fast, it sure felt like an “attack” to me. There most likely is lid surgery in my future, as well. I still take MMI to try to manage my hormone levels, which remain very variable. But at least the eye disease stabilized so the corrective surgery could happen. just wanted you to know you’re not alone in this fight!

[scanders]

in reply to: Finally–eye muscle surgery scheduled! #1183480

Insurance is a go. Thyroid levels have risen a bit (I think my engine’s running a little hot, but hasn’t overheated yet), and MMI dose has been increased accordingly. Meanwhile I now have red, scratchy, burning, watery eyes. I hope it’s just dry eyes from lack of sleep from the increased thyroid levels. Both the surgeon and the endo said that while these levels were abnormal, they were not elevated enough to postpone the surgery. My understanding is that the eye disease runs a separate course from the thyroid piece, so most likely not related. I might have a smidge of anxiety (I can get like that when my thyroid levels increase) but this is an eerie repeat of last January with rising thyroid levels, and eyes started to feel just like now… But I also think it’s highly unlikely that TED is flaring up again, the odds of that happening are very slim. (There, I think I’ve talked myself down…) Surgery is in 5 days, and I am looking forward to it. Or at least I’m looking forward to the results of it!

[scanders]

in reply to: Update on Vision therapy #1183489

So glad to hear the vision therapy worked! Best of luck with your surgery!

[scanders]

in reply to: Feeling fairly hopeless #1183281

Hang in there! You’ll feel better. You’ll have some good days and bad days along the way, but eventually you’ll have more good days than bad. (I’m one of those still looking for the perfect dose of MMI, and having a few ups and downs along the way.)

I’ve told some people at work, but on a case by case basis. Working in healthcare, there are some folks that are truly interested in learning about the disease. One of my team members is a nursing student, and said she passed her endocrinology class because I shared with her. (I have TED that’s really noticeable, so it’s pretty clear something’s still not quite right with me. Some people ask, but most just stare, do a double take, or avert their eyes. Before the eyes were so noticeable, it was just a big weight loss, then gaining it back, and people really didn’t want to comment on that so much. )

Best of luck with your treatment! It really will get better!

[scanders]

in reply to: Update and swollen lymph nodes #1182748

Hi calbears,

I’m so sorry you have to ride the roller coaster! I’m pretty sensitive to small changes in the MMI, too, and my endo said sometime the antibodies just do what they do, and there’s really no predicting that. I spent a lovely 6-8 weeks feeling pretty well, and then, just like that, my levels dropped and I’m struggling to get back to my happy place. I’m one that thinks hypo is much worse than hyper from a functional level. Anyway, you’re not alone, and best of luck with your treatment decisions.

[scanders]

in reply to: subclinical hyperthyroidism? #1183248

Thanks for the link! I have found a few things to indicate that the steroids, even short term, may have wreaked some havoc with the thyroid hormone levels. Of course, it could be coincidental. Now I wait and see if things turn around, and hope, as the endo said, that we don’t overshoot with the dose decrease. But again, no sense borrowing trouble. (But oh, I sure wish I had a crystal ball..)

[scanders]

in reply to: subclinical hyperthyroidism? #1183246

It’s stressful to be frozen, foggy, fluffy, and fatigued. But I’m going to be optimistic that this train will be turning around soon with the dose decrease, since there was that little bit of movement with the levels. And whether it’s SH or hyperthyroidism, it’s still just that, I guess–hyperthyroidism.

That’s a good suggestion to choose a symptom or two to focus on for symptom management. I think my main ones are brain fog, and being frozen for low. Especially the first–those close to me comment on my fogginess when it’s bad. (“Don’t you remember?” “I already told you that”. Sigh…) I don’t do as well at recognizing hyper symptoms, and I’m not sure why. Maybe because it feels better than hypo, so I ignore it?

[scanders]

in reply to: subclinical hyperthyroidism? #1183244

I revisited with my endo. Reminded her that people with brain fog might be challenged to reason things out. She suggested just reducing to 2.5mg every other day for now and recheck in 4 weeks, since she felt that dose would have a better chance of helping me feel better in the near future, which, I guess, trumps borrowing trouble from the “what ifs”. If my levels increase too much, then we make another adjustment. There just are no short cuts. I have to keep working on this patience thing.

I must say, I really appreciate that she does seem to hear me when I tell her I don’t feel well, even if the numbers are “normal”. (Of course, we’ve had a little time to develop this relationship…)

[scanders]

in reply to: OD is done! #1183061

10 days post op and back to work, after seeing both surgeons for post op visits this morning. No bruising from this procedure. Pain manageable with extra strength Tylenol within 24 hours, and by day 3-4 pain less than before surgery, although I’m told my pain tolerance is high. Eye doc is very pleased with reduction in bulging, as am I. It was the immediate reduction that he said was “better than expected.” Eyes still inflamed, dry and gritty, and he’s not sure my right eye will be able to be fully aligned. (It’s pretty close to my nose these days.) He said when all is said and done, it’s very possible I’ll still need prismatic correction with glasses even after eye muscle surgery. Since I’ve said more than once that I miss wearing contacts, I suppose he’s just trying to prepare me in case I don’t get back to wearing contacts. However, if it’s single vision without this ridiculous film/foil over my lens, (like looking through waxed paper much of the time) I could make it work. Who knew I’d miss being able to use a prism, but I sort of do. But, who knows? I’ve got a few months to go before we even get close to the next step, and the strabismus doc is supposed to be one of the best. Hopefully by the time we’re ready, he’ll be able to work some magic! (And maybe there’ll be some improvement? A girl can hope…)

[scanders]

in reply to: TED makeup tips? #1183087

Hi Janet,

Might not be helpful, or what you’re looking for, but I gave up on the eye makeup, too. The eye irritation made it difficult, but the double vision made it nearly impossible. (Mascara wand and no depth perception? Not a good combo;).)

My two eyes have looked very different for a while, now. I had to acknowledge that when people look at my eyes, they’re probably not noticing whether or not I have makeup on. People that know me and care about me don’t care about the makeup. People that don’t know me probably don’t really think about me that much to notice. (Full disclosure–they can’t see my worst eye clearly because I have a film over one of my lenses, which also causes it’s share of stares and double takes. They will ask why only one lens got steamed up. But no mention of why no make up. And I already wear bangs.)

I’ve gained some new perspectives and priorities on this TED journey. I’d agree with others that this has been the most challenging part of Graves.

Best of luck!

[scanders]

in reply to: Graves’ and TED – Status update #1183068

Robboford, your positive attitude is an inspiration! Best of luck to you! I hope some wiggle-room on the timeline can be found, but at least you’re moving into the planning stage.

[scanders]

in reply to: Finally scheduled for OD surgery! #1183041

Congrats on finally moving forward! It looks as if it’s been a long road for you, and you’re more than ready! (Mine is scheduled for Friday, both eyes. Same day surgery. An hour or so per eye I’m told. Mostly ready, but still a little nervous… sounds as if you can relate.)

[scanders]

in reply to: Lord I need help #1183014

Just one more voice to say hang in there, it will get better! I was diagnosed a little over a year ago. Started on methimazole, and within a month, one day I noticed the sun was shining and I felt all right. (I hadn’t even realized I had gotten into such a dark place prior.) I didn’t stay there and have been both hyper and hypo since then, but that’s helped me develop a frame of reference to better identify symptoms I need to pay attention to. Right now, I have this calm sense inside that I haven’t felt in…I don’t know when. First time I’ve had both FT3 and FT4 close to midrange at the same time. (I hope this is a sign that Graves is loosening it’s grip on me.)

One thing that’s really helped is keeping a symptom journal. I record how I’m feeling, things I’ve done for stress reduction, dietary changes, labs, med doses, TED symptoms, weight, pulse, etc. (Diet is apparently not a trigger for me, I’ve found.) I’ve been able to bring this to the endo and show her that last time my labs were here I felt ___. If nothing else, it just helps me to write how things are going in general. I like to write, obviously, from the length of my posts.

[scanders]

in reply to: Yikes! The OD is scheduled #1182947

Surgeon says the criteria for inactivity is somewhat vague, and that I’ve been technically by exam pretty stable. He also said they decompress enough “so that future swelling does not affect the surgical approach.” He said I could wait, but it is probable that I’ll still need this surgery. While some improvement is possible, in his experience I won’t see enough improvement to avoid it. (The longer I wait for this, the longer I wait for muscle surgery.) He feels comfortable moving forward at this time. So my questions are answered and I’ve decided to be comfortable with the decision to do it.

[scanders]

in reply to: Yikes! The OD is scheduled #1182944

Thank you all for your sound advice and suggestions! The people on this board are such a blessing, and resource! I feel calmer already.

I do have a few questions that I want to ask the eye surgeon. I think when I get those answers, I can feel at ease with it. Part of me is still apprehensive about the timing (is the eye disease inactive? Does it even have to be for this part?) Part of me is sooo ready to move on and get to the next step after this and (hopefully) single vision. And as I’ve had more pain over the last few months, I’m hopeful that will decrease. I suppose the eye doc was just trying to “ease” me into the idea. Maybe he didn’t know it would come together this quickly, either, since the scheduling was initiated by the ENT office.

I’m fine with the ENT doing the actual nasal surgery. And I have enough time in my extended sick leave “bank”, as I’ve never touched it, so 2 weeks would be doable as long as the doc gives me documentation that it’s necessary. I’m preparing and assuming I’ll move forward–CT is done, pre-op is scheduled, FMLA paperwork is in progress, etc… I just need those few questions answered to feel totally at ease.

Shirley, how long did it take after OD before strabismus surgery could happen? And yes, I think I’ll need new glasses. I’ve had these glasses for over 10 years. My prescription had changed a little, but since I primarily wore contacts, I could get by with my glasses as they were. But, I was at a conference this week, and I couldn’t see the projection screen with my stronger eye and my glasses, plus, I had to look up a bit to try see it. Back to choosing neck pain from chin way up, or headache from resting my neck and trying to look up with my eyes. That was from trying to see the speaker, and the larger letters on the screen. Anyway, it was too blurry to see most of it, so I’d anticipate it will be time to get new glasses when the dust settles.

I think I’ve read most of the posts regarding post op that I could find on this board, as well as gatorgirly’s blog. The information from the surgeon’s office is pretty scanty compared to the real life answers on the board, so I’m especially grateful folks have been willing to share here. Maybe I can return the favor when it’s my turn. Thanks again!

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