[gatorgirly]

in reply to: OD questions–confused #1182865

Shirley can comment on the OD-to-strabismus journey, as she had both.

I had OD on both eyes in September 2012, and mine was also done by both an oculofacial plastic surgeon and an ENT surgeon, and done nasally (I think the term is endonasal).

Questions you should ask:

1. Are they removing fat, bone, or both? If bone, which bones? I had my orbital floor and medial walls removed, as well as fat from behind my eyes. I did not have the lateral walls removed as that requires scars in the “crow’s feet,” which I am still too young to have and thus my surgeon felt it would provide no added benefit.
2. Will it be done in the office, surgery center, or hospital?
3. Will they file this through your insurance as medically necessary or cosmetic? It should be medically necessary but ensure the surgical coordinator in the office knows this, otherwise insurance may deny your claim.
4. Will you need to stay overnight? If you can go home, will you need someone with you? I would highly recommend you do. I was in a LOT of pain and was really sick from the anesthesia, and needed my dad to clean up a few times and do things like bring me new ice packs and let my dog outside.
5. Will your eyes be stitched shut? No one told me my eyes would be stitched shut, and I freaked out so much thinking I was blind that they ended up removing the stitches from my left eye. If either eye will be stitched shut, consider having someone stay with you until the stitches are removed.
6. Will they give you any sort of ice packs or head wraps? I got this great wrap that velcroed around my head and could fit small, gel ice packs on each side – one for each eye. You don’t want actual ice cubes because they will be too hard and large on your sensitive, sore eyes. Bags of frozen peas and corn work well, too!
7. What pain meds will you get, and will they start them intra-op? You most likely want this so that you aren’t immediately in pain when you wake up. I tried to be a hero and was miserable, and the pain caused me to clench up which sent my heart rate and blood pressure through the roof. Some fentanyl and I was good to go.
8. Can you fill the prescription for pain meds and eye ointment (for the incision sites) ahead of time or will someone be able to pick these up for you? Also, who will put the ointment on your incisions the first couple of days, especially if you are patched or stitched?
9. How long of a recovery period should you expect? I took two full weeks off work, and needed every last minute of those. I went back to work half days during the third week, and full time the fourth week.
10. Because your surgery will be endonasal, will they provide you with a netipot/sinus rinse or do you need to buy this yourself? I used mine twice a day and for about a full 2 weeks, blood and mucus would come out every time – what a relief, honestly.
11. What can you do to speed up the recovery process? Eating protein, taking walks, drinking water, switching from pain pills to ibuprofen or tylenol, etc.?
12. When can you start massaging the incision sites to prevent scar tissue from forming? How often should you do this?

I’m sure there are more. I blogged all about the surgery (and the subsequent eyelid retraction surgery), so let me know if you want the link.

[gatorgirly]

in reply to: More TED trouble #1182803

When my TED was at its worst, my employer was very accommodating. They removed the flourescent lights above my desk and let me use just a low-wattage desk lamp (which some days I never turned on) because I was so light-sensitive. They also offered me a glare-reducing filter for my screen, but I found that just lowering the brightness was enough. Would your employer be open to switching you back to a laptop if you explain to them what is going on with your eyes?

Wondering why you’re taking acetaminophen as opposed to ibuprofen. I was prescribed ibuprofen for TED pain because it is an anti-inflammatory. But eventually, I had to stop it altogether because of an ulcer. Maybe you can’t take NSAIDs either – just curious.

[gatorgirly]

in reply to: Eyelid retraction correction surgery #1182604

Gosh, that truly is awful. My colleagues within my department at the college were great, but everyone else was terrible. We all found to be what we described as “toxic” as well. Half of us have since left and the other half is currently looking for new jobs – so I hear you.

Glad you’re going through HR and upper management, as your boss could find herself in legal trouble if she give you a hard time. I’m guessing HR told you that all communication should be through email so that there is a paper trail, proof of you letting your boss know, her response, etc.

Good luck! The 24th will be here before you know it. You’ll feel more confident and thus be better prepared for job interviews when you look like your old self again!

[gatorgirly]

in reply to: does thyroid med cause stomach and esophagus irritation? #1182723

I actually developed pretty severe GERD (reflux) within two months of having RAI, but four months before I started Synthroid. My dad has it too (long before he had Graves’), but mine started so soon after RAI that my gastroenterologist and endocrinologist believed that it was actually all the fluctuations in my thyroid hormone that caused all my GI issues (I also had gastroparesis for about six months and was lactose intolerant for about three months – all started at the same time as the GERD). I had a barium swallow study (passed – normal), a gastric emptying study (failed), and an upper endoscopy, during which my esophageal stricture was repaired via a balloon, a duodenal ulcer was cauterized, and a biopsy of my small intestine was taken to test for celiac (negative).

I had to avoid all NSAIDS for six months to allow the ulcer to fully heal, and I noticed a huge difference in my GERD as well. However, I am on antacids for the rest of my life. First I took Nexium, which I couldn’t afford very long. I switched to 80mg omeprazole, then over the course of two years gradually lowered my dose to 10mg. Now I am on a 75mg dose OTC, generic brand of Zantac (ranitidine).

In short, my medical team felt it was both genetics and my thyroid roller coaster that led to my GERD. I am on 112mcg Synthroid but my GERD is the same from day to day, even when my dose changes.

Definitely agree with the suggestion to drink more water when taking Synthroid. I drink a full glass of water with mine first thing every month. A. It helps the pill go down easier and B. It’s good to drink a glass as soon as you wake up!

[gatorgirly]

in reply to: Eye twitches :( Do they go away? Please help. #1182719

For me, my eyes only twitch when I’m extremely overtired – which I certainly was all the time when I was hyperthyroid. At first I found myself blaming a lot of symptoms on my thyroid levels when instead they were unrelated or maybe just a second-tier side effect (hyperthyroid -> fatigue -> eye twitching).

What do you mean that you become hyperthyroid due to weight loss? Weight does not control your thyroid levels – rather it is usually the other way around. You didn’t cause yourself to be hyperthyroid because you’re eating better and working out and losing weight.

Like Kimberly said, you definitely shouldn’t be changing your doses on your own, especially as it takes a while for thyroid levels to stabilize. My endocrinologist and I agreed a while back that I feel my best on the “hyper” end of normal with a TSH below 2.0, even though according to my lab, normal is 0.5 to 4.5.

One of my first TED symptoms was severe dryness. Even if you’re not yet experiencing actual eye/vision changes, it’s always good to get some baseline tests done so that if and when changes begin, your specialist can see that there are measurable changes taking place – especially if they aren’t noticeable to those not familiar with the way your eyes normally look.

Good luck!

[gatorgirly]

in reply to: Eyelid retraction correction surgery #1182600

I’m pretty sure even if your surgery was cosmetic, HR can’t make a fuss about it. But I’m not too sure about the laws/policies where you are. My surgeon primarily did cosmetic surgery as well – my surgery was done in the hospital. Are you sure you have to provide a note? I did not have to provide any documentation from my surgeon or the hospital.

I had my surgery at a really inconvenient time – I worked at a college and it took place the week of Homecoming. I did plenty of pre-work to help my team out ahead of time, and theyhad two months’ notice so they could make arrangements to be without me. Your health comes first and this is an important surgery in your recovery process.

It really sounds like you aren’t convinced, and therefore, your boss won’t be either. Maybe do more research so that it’s not even a question as to whether or not this is medically necessary. It’s perfectly fine to keep your health issues private, but your boss and HR should be on your side. If you explain more about Graves’ and TED, they are likely to be a lot more understanding and compassionate. I kept my medical history completely private until I got the surgery date. Then, I sat my boss down – also a bit fearful like you are. Turns out, her predecessor had Graves’ and TED, and she and my co-workers were generally intrigued and very concerned for me. I was not expecting this at all, so maybe you’ll have a similar experience.

10 days is definitely not necessary for eyelid surgery however my bruises were still evident for about two weeks so if you’re waiting for the bruises to fade before you return, that sounds about right. I wore glasses (instead of contacts) until the bruises were completely gone. By the last few days, it looked like heavy eye makeup.

Start looking for a new job now – you sound like I did when I hated the job I was at when I was diagnosed. Not good!

[gatorgirly]

in reply to: Eyelid retraction correction surgery #1182597

I had this surgery 11 months ago. I wasn’t on disability but it was fully covered by my health insurance as it was considered medically necessary to my Graves’ and TED treatment. Make sure your surgeon and/or the office’s surgical coordinator file it as such.

As for taking two weeks off, that seems a bit generous. It’s a relatively minor outpatient surgery, and mine was done with only local anesthesia – the surgeon had me open and close my eyes several times so that he could ensure my eyelids ended up symmetrical. Compared to orbital decompression, the eyelid surgery (I had both eyes done) was a breeze. I went back to work the next day, threw a bridal shower four days later, and started a new job a week later. The bruises looked way worse than I felt, but by day 6 or so, people said it just looked like I was wearing dark eyeshadow.

I blogged all about the surgery and recovery – happy to send the link if you’d like.

[gatorgirly]

in reply to: lifting lower lid simply by massaging it upwards. #1182497

Are you pre- or post-surgery? My surgeon told me to massage my upper lids after I had eyelid lowering surgery so that I wouldn’t develop scar tissue (that would prevent the eyelids from dropping as much he intended in surgery). I forget what the exact instructions were, but it was like 30 seconds per eyelid, 3 times a day for a couple weeks after surgery. I forgot a lot, and one time I massaged too hard and actually yanked my stitches out a little bit and have a scar (that only I notice, but still) in that upper lid now.

[gatorgirly]

in reply to: Graves’ Disease & Soymilk #1182486

Depends which medication you’re referring to. My endocrinologist instructed me to avoid any soy-based products (along with calcium supplements/Tums) for four hours after taking Synthroid. However, I was told there is no thyroid-related reason to avoid soy after those four hours are up.

When I was looking to cut dairy from my diet, I switched to to almond milk. After almost a year, I switched back to organic cow’s milk. I avoid soy as much as I can due to the link between soy and breast cancer, but not because of any thyroid issues. I don’t have a thyroid anymore thanks to RAI.

By the way, if you are avoiding processed food, you don’t consume soy milk or tofu. Those are heavily processed products.

[gatorgirly]

in reply to: Post RAI levels and exercise questions #1182424

We also lose muscle mass when we’re hypER, so as long as your levels are normal or even slightly hypO now, you should be able to get clearance for physical activity. You want to start building up your muscle mass. It’s really hard to get active after RAI – I know this first hand (I was 26 at the time of my RAI). But once you get into a routine, it WILL give you more energy. You’ll be more awake during the day and sleep better at night.

Now that you’ve had RAI, the chances of you needing to go back on anti-thyroid medication are slim. Most likely, your levels will only fluctuate slightly and your endo can lower your levothyroxine dose to get you into normal range. I had RAI three years ago and we’re still playing around with my dose (but I’m not the norm).

I can tell you that for the first year after RAI, I exercised my rear off working with a personal trainer. But the scale didn’t budge and neither did my waistline. So I gave up for a year. Then I started making drastic diet and exercise changes – far less processed food, fruits and veggies with every meal, less red meat, and a varied exercise routine. Some days I do plyometrics, some days I do yoga, some days I putz around different machines at the gym, and most days, I run. It’s finally giving me back my muscle mass and helping me lose the Graves’ belly. I honestly don’t think there is a difference in what you could or should be doing now versus before you had Graves’ – except of course less sitting around playing video games, smoking, and drinking caffeine

[gatorgirly]

in reply to: What is your life like after RAI ? #1182376

The first six months were no different than the two years of Graves’ leading up to RAI, but honestly, life after that was exactly like life was before Graves’. I felt healthy and happy and generally well. It’s been three years since RAI and I most days, I forget I ever had it.

[gatorgirly]

in reply to: How to find a good doctor (not a newbie, on doctor #3) #1061061

Low normal doesn’t equal feeling normal. The same goes for high normal. I feel at my best when my TSH is at the low end of normal (right around 1.0) but my really-old endocrinologist at first tried to keep me more in the middle around 3.0 and I felt awful/hypo.

Why don’t you request an appointment where you sit down and tell her you want to listen to your body in addition to the labs, and that you feel really good on 2.5mg/day? I can tell you right now from working in healthcare that your doctor can discharge you for going against medical advice by changing your dose on your own, so you may be looking for a new endo whether or not you want to, but I’m sure you knew that.

She’s not at all alone in telling you that you can’t stay on the methimazole forever. My dad’s endo tells him the same thing all the time, and we brought it up at a recent Boston support group. The endos and surgeons told us plenty of their colleagues say the same thing – it’s physician preference. Certainly we know people who have stayed on methimazole long term but a lot of physicians aim to get their patients off all medications whenever possible, so they push us toward surgery or RAI. You can refuse of course, but it isn’t her being close-minded or not following the latest research. There simply isn’t enough research on people who remain on ATDs indefinitely.

[gatorgirly]

in reply to: RAI on Thursday #1182272

I didn’t have a goiter by my thyroid uptake levels were off the charts, so I welcomed RAI with open arms. It took six months to finally work, but that’s pretty uncommon. Almost everyone feels hyper initially, mostly because you’ve been off the drugs, but extra beta blockers and a low dose of PTU helped me feel OK.

Your thyroid tissue will eventually shrivel up and be absorbed, essentially, and the goiter should go with it.

Are you not on a beta blocker? ATDs like methimazole can control hyperthyroidism but the heart rate issues usually require a beta blocker. My did, and I actually needed them for 18 months after I became euthyroid. I saw a cardiologist who said my heart was healthy, but something was telling my heart to keep beating fast even though my thyroid levels were normal. Eventually, it got the message

As for RAI tips – go grocery shopping in advance or plan to order a lot of delivery since you can’t go out for 72 hours. Drink lots and lots of water to flush the radiation, and plan to have some hard candies like lemon drops readily accessible for a possibly sore throat. Mine felt like strep. Have a project – like binge-watching an entire TV series or something more productive like a home improvement project. I also sat on my front porch and got plenty of fresh air.

Don’t be scared! They make you wait around for a little while after swallowing the pill to ensure you don’t have an adverse reaction and from there, you don’t even realize something is going on inside except maybe a sore throat.

[gatorgirly]

in reply to: orbital decompression surgery #1182245

Hotels are cleaner than hospitals But honestly, I found being in my own bed in my own house so beneficial to my recovery. To each his own, but I would much rather sleep through a two-hour car ride and get into my own bed than stay in a hotel.

[gatorgirly]

in reply to: orbital decompression surgery #1182240

Interesting – didn’t know there was a link between steroids and type 2 diabetes. I went back on a very low dose of the steroids immediately after my surgery and for a full week after (maybe two, I forget). It was just to keep the inflammation down since I couldn’t take ibuprofen.

Your surgeon sounds great but I would ask in your pre-op for a full rundown of the procedure. You can take notes as he talks. And you’ll find that his surgical coordinator and the post-op nurses will have a lot of advice for an easy recovery, moreso than he will.

I just noticed you mentioned the two-hour car ride home. Hopefully you’ll be so medicated that you sleep through most of it. I become a very angry person with anesthesia, and I went into a full-on rage when my dad hit a pothole because the jolt caused all my bandages to move. Otherwise being in the car wasn’t so bad except that I wanted to sleep but my nose kept bleeding, so I had to sit perfectly straight up.

You are right – I had the medial walls removed, not the lateral walls. Silly me! Medial walls are the ones along your nose, lateral are outside the eyes and I was told they go through your “crow’s feet.” Since I was only 26, my surgeon felt giving me scars where I didn’t yet have wrinkles wouldn’t be worth it and he was right – removing the medial, floor and fat made my eyes exactly as they were before TED. But given how well my eyelid scars faded, the lateral ones probably would’ve, too.

It was a full week before I felt well enough to stare at a screen and write about my experience. And then I could only handle it for short periods of time, but I can’t wait to hear about how it goes for you!

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